So, I've compiled a few stories of successes and improvements found in the archives.

Thank you to each of the contributors...

Your words of inspiration are more valuable than you could ever know.

Please feel free to add your own stories, so that we all may hold on to hope through our own journeys.

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C O L O R A D O * S U P P O R T * S Y S T E M
[email protected]

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Please let me know, and I will remove or edit as you so desire.

Thanks, M

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C O L O R A D O * S U P P O R T * S Y S T E M
[email protected]
 

Nice job. Hooray.

Just one 'ittle bitty suggestion. It might be a good idea to copy each separate item as a separate, new post. The change in background color helps folks to separate them visually just that much more easily -- well next time. I wouldn't do it all over just for that minor change.
 

Ya know...that was my first inclination...
and to tell ya the truth, it would have been a whole lot easier! Live and learn!

I will probably recopy later...after I infuse, and after my head and eyes stop hurting, OK?

But...
can't think of a better way to spend a Sunday! NEW YEAR...NEW HOPE!!!

I am also certain that there are many other success stories hidden in the search mode...
so, that will be my next direction as well.

(These stories were all still accessible on the current pages.)

Thanks,
M

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C O L O R A D O * S U P P O R T * S Y S T E M
[email protected]

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dll
 

posted 04 January 2004 10:17

AGuess,
You asked whether people can get better and others have assured you that this is often the case.

For the sake of an example, I'll give you a rundown on what has occurred with me over the last year. My infection occurred in 1991, at the latest, and I've never been completely incapacitated. So, our situations may be somewhat comparable.

Lyme Disease symptom status as of December 2003
Objective improvements since starting antibiotics January 2002 (Observed by others)

1. Respiratory
a.No respiratory infections in twelve months
b.Stopped snoring
c.No ``asthma'' symptoms (have used no inhalers)
d.No ``air hunger''

2. Cognitive
a.Improved speech, word substitutions reduced.
b.Disorientation resolved
c.Short-term memory problems resolved
d.Train of thought resolved

3. Neurological
a.Vertigo only when herxing
b.Facial twitching is very rare
c.Tingling and numbness in hands is gone
d.Excessive perspiration not a problem unless herxing

4.Dermatological
a.No angular stomatitis or aphthous ulcers in last 4-5 months
b.Facial flushing gone except when herxing

5. Neuropsychiatric
a.Exaggerated sense of poignancy (choking up over nothing) dramatically reduced
b.Irritability dramatically reduced

6. Urogenital
a.Am consistently able to go though most of the night without needing to urinate
b.PSA dropped from 2.6 to 1.4
c.Starting urination is MUCH easier and faster

Subjective improvements

1. Muscoskeletal
a.No arthralgias except when herxing
b.Tendon pain absent except when exerting myself or herxing

2. Neurological
a.Visual contrast sensitivity is no longer an issue
b.Depth perception seems improved
c.Vision has improved (hard to describe)

General Effects

1.Have not been ill in a year
2.Often feel like I did before 1991
3.Have returned to being a confident driver
4.Doing my work isn't a struggle
5.I'm able to do physical work and enjoy it
6.I'm not in constant pain

My progress has been satisfying but may not be typical. I've taken Bicillin (Benzathine Penicillin G) 1.2 MU by injection three times a week and Biaxin 500 mg. twice a day. I take other things still to help with certain symptoms but, basically, am not much affected in terms of what I can do.

Good luck with this. BTW, you may find that the "RA" is actually Lyme.

David

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posted 01 January 2004 11:53

This is a bit personal.......but what the heck. For those of you who have know me on this board for 2 years and for the ones I have gotten treatment with and have been able to meet, mostly know my history for those that dont, i hope you learn something.......I have had a serious condition other than lyme since i was 18 that has affected my endocrine system in a devastating way.

I have had amenorhea since 98.....in 2001 diagnosed with osteopenia at 21. tHis also developed into low thyroid and extreme adrenal fatigue. My heart sank. 2 months ago when i got my hormone test the lab said i had third stage adrenal exhaustion and at 23 my body was aging rapidly and my bones were possibley at stake.

I was also bit by a tick and contracted lyme disease in July of 2001 and diagonsed with mercury and lead amongst other toxic metals in december of 2002 to lead to my body being in a paulsal state if you will.

After a year of going through heavy metal chelation with neural therapy which i feel has saved my life and that im still undergoing, treating lyme disease with various ways (and I mean various) and only a month into my adrenal protocol set by my ART physician........I finally got my period.

I feel with this recent gift on New Years Day
I am so blessed. As you know you become humbled by this disease and every good day is like a glass of cold water when you have given and spent and given waiting for results that might give you a clue that youre on the right track.......and that this is for something.....to restore total health and get your life back.

In college i was running approx. 70 miles a week, and one week out of the blue i became so dangerously exhausted that my mother had to help dress me, feed me, bath me, and sleep with me at nights. I could barely hold my head up to eat a bowl of oatmeal which i was probley allergic too. all i remember is being so tired and waking up all the time hungry to eat, and go back to sleep andi did this for close to a year.

I am a firm believer in excercise and if it were all icould do to walk to the mail box and back for 5 minutes its what i did. Now im biking and walking about 45 minutes on a very good day but i never miss. I have come a long way since then. Im not out of the woods yet, by any means.

But i think this is SIGNIFICANT for me, not to mention extremely healthy that im getting results this quickly. I never imagined this.

Most people would say my life has quality now.......but not even comparable to the person i was. I can spend time with friends and family, walk around the mall.......go to movies and Im taking classes part time this semester. But I still have tired days......but there is no doubt in my mind im gonna get there and achieve totall optimal health.

and i wont ever give up. and by the way, this recent turn around for me was done by all natural means. I have been off abx since March 2002.

Runner

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posted 03 January 2004 13:19

Hi Cbb,
Thanks for posting...I knew you'd be the first one to post a reply Thanks for your constant support and kindness..it is greatly appreciated!

Yes, Dr.J is a saint. The children have unofficially adopted him as their grandfather.

Mikayla who is usually shy around unfamiliar men, spent most of the visit in his lap. And as we were pulling out of the parking lot getting ready to leave, we had to pull in again..as she forgot to give "Her Dr.J" a kiss and wish him a Merry Christmas.

So back in we go, and Dr.J got his kiss and so did all the girls if the office. I think she made a lasting impression on them
I told Derek that you were proud of him for his spelling tests..and he said he'll try real hard to make it 11 100% in a row!
It's so nice to see him enjoying learning again.

While most kids watched Nickelodeon, he would rather watch the History or Discovery channel. He always loved learning and I was afraid lyme may have taken that from him.
I didn't need to worry... lol!

While we were in the pool at our motel in Florida he carried on a conversation with an older gentleman about famous composers..Mozart, Tchaikovsky, and Bach to name a few.

He went on to tell him that he liked the works of Vincent Van Gough. And that he found Archimedes very interesting. They talked about architecture, the space program and Derek even gave him the names of some famous people who were homeschooled.

I just sat here in awe...was this the same little boy who 3 months ago was having trouble remembering what he just read?
And I think that was the moment that I realized, just how far Derek has come these past 3 months.

He looks healthier, he acts healthier, and even when he has a bad day, he smiles as he knows a good day is just around the corner.
So I am looking forward to a wonderful new year, and hope that next year, I will be posting that both children are lyme free..wouldn't that be great!

Best wishes! And thanks for always being there

Hugs,
Missy

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posted 31 December 2003 11:22

It has been almost a year to the day that I found this site and shortly thereafter found help for my illness with Dr. J in NC. I want to say thank you to all of you who responded to my early desperate posts and to those who continue to help folks new to LD and this forum.

In early November I was retested with the new urine tests and WB and had an MRI. All tests came back negative. I decided to take a leap and go off all meds, with support of my doctor, even though I was still experiencing some ongoing symptoms.

I have spent the last two months trying to build back a healthy immune system and have been seeing a chiropractor. I feel great. I sleep at night, I don't feel fatigue, my arm and leg do not bother me on a daily basis and when they do I go for an adjustment and then feel much better. I'm happy and have a sex drive again!

I'm sharing this with you because while I was sick it helped to give me hope when I would read good news. I hope this message gives some of you hope for wellness in 2004. It is possible!

I do know that it is possible for relapse, but I'm going to do everthing I can to use alternative therapies to prevent going back on antibiotics.

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posted 28 December 2003 20:43

Just wanted to let anyone out there know that I'm doing well, not 100% but at least 80%(only Lymies talk in percents as to how well they are doing).

Tomorrow I will finally get to try my own rife type machine emem5. I tried a freinds and seemed to have good results. I've been on abx for 16 months and I think they are begining to lose thier efficacy? I currently use samento, artemesin, B12, oregano oil, and some other supplements.

I still have floaters in my eyes, heart irregularities, pain and of course the ever present Fatigue. I explain it to my freinds that if they felt like I do everyday they would stay in bed and never get up.

I'm able to ride my bike swim and ski again. I don't know what I would have done without the ability to do these things exercise and everyone one this page lead me to be able to figure out how to wage the ongoing battle that is lyme disease.

One year ago at this time I didn't think that I would be on this planet for much longer but things did get better, not great but I'm thankful for the secong chance and will try not to waste it. Thanks to everyone for sharing all that they have learned. Jack

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posted 08 December 2002 15:12

Okay.... Getting back to the topic of success stories,

I'd like to share a couple with you.

My neighbor, knowing I have Lyme disease, came to me this summer with a suspicious mark on his leg.

He had pulled a tick off the area 2 days prior. I took one look at it, and sent him to walk in care.

There he was treated with an injection of antibiotics, and put on 6 weeks Doxy.
He had very few symptoms during this time, and is now lyme free.

---------------------------------------------
I have another friend who after 3 years of IV treatment, and short term orals, was put on 6 months of Biaxin, Plaquenel & Tetracycline.

He has been off antibiotics for over 6 months, and hasn't had any Lyme symptoms reappear.

So there is hope!!!

~ Missy

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posted 09 December 2002 17:54

I am a TRUE lyme success story after being in Stage 3 (if you truly want to categorize lyme) of this horrible disease.

I was bit many times over my 45 yrs. but the one that put me 'over the top' was the summer of 1996 while visiting Allaire State Park in NJ. (ANY state park in NJ is lyme infested!!!). I noticed ticks crawling up my leg the next day and one embedded in the back of my right hand. I called my Dr. and said "wait til you get a rash"...never did.

I had a weird sx at 1st, my lg. right toe was in agony like I broke it...but never even hit it. Went to 4 drs., was told I bruised it, broke it, sprained it and and I had gout!!!

Fast forward 2yrs.--became VERY sick, severe migraines, sinus infections, was losing my mental clarity and I was a mess. I was raising 6 kids, husband was dxd with lyme FINALLY after various dx of Graves disease, possible MS, TIAs, etc. and 6 mos later I was confirmed (only had #41 on WB from Igenex). I have an EXCELLENT LLMD!!!!

I was sooooo sick, couldn't function at all, couldn't drive cuz I drove thru red lights, wrote 1975 on all my cks, severe migraines, light/noise sensitivity, anger outbursts, finally paralyzed from the neck down. AT the same time....each of my 6 kids were dxd with lyme!!!! YIKES!!! (youngest is now 7)

I did 3 1/2 yrs. of abx, alternative, all kinds of crazy things and now I have been in remission for 8mos. or so. Am I DONE with lyme?? NO, nobody is ever done. I tested positive and was treated for lyme, babesia, ehrlichia, bartonella, mycoplasma, HHV-6 and Epstein Barr. I will warn you!!!

I have seen now time and time again (self included) that the babesia tests are coming back neg and people DO HAVE babesia~!!! How do you know??
Night sweats, chills, fevers, shortness of breath, pain in your heart area, upset stomach/can't eat.

One also HAS to be tested for all the co-infections and treated usually for a MINIMUM of 6 mos. each, for each one. You hear over and over how someone has been doing yrs. of abx and showing no real improvement. That is because you have not attacked the WHOLE issue.

I also know about rife, hyperbaric O2, colloidal silver/seasilver, all kinds of txs.
I am now in the natural health care profession and if anyone would like to learn more, plz write me. ([email protected]
or [email protected])

I have helped well over 7,000 in the past 7yrs. and this is my contribution to the lyme community. I have been and will continue to be dedicated to this. I have been to the political rallies, conferences, fighting the OPMC, etc. and will continue even though I could walk away.

sue in nj
sue massie

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posted 10 December 2002 22:19

Well I'm here to bring it back "on message"-
but most of all of you have heard my success story already-
I don't know if I'm not flogging this one to bits, but once more with feeling:

As short as I can mke it-
excellent health pre-bite, never sick, very active life
get good EM bullseye within 1 week of exposure to ticks
on low dose ABX right away
discover LymeNet, ask for more ABX when still sick after 3 weeks
good family doc gives me more ABX, says find a Lyme specialist
get sicker and sicker- scary neuro's have me stammering, staggering, and slurring when I'm not sleeping
see parade of idiot ducs-
implication: I am nuts
find hero LLMD, get Mepron
brain fog starts to lift. I can see, read, drive, and think again.

find hero wholistic doctor (accupuncture, chiro, and a whole butt load of stuff. And the 2 doctors are totally OK with my truly complementary therapy!)
Godd days add up.
Good days outnumber bad.
Bad days seem like bad dream.
Coming back to my life with a vengeance.
Feel like I just got back from a very bad vacation.

And is my desk messy!

My Lyme adventure began May 2, 2002.
I went through some terrifying times.
But by October, my calendar was again being used as an appt book, not a symptom diary.
I personally believe I am not 100% free of the bad boy microbes yet, and I am still on radical wholistic therapy to support my immune system.

But my life is back.

Yo Lou, I am SO looking forward to having a place to record my story of my Lyme adventure- it's a story with a moral-
Don't mess around- find a LLMD. No buts.
And do what you have to do for immune support!

I hope I haven't strained the hospitality here with one more rendition,
but at any rate, it's bringing the topic back up to the top!

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posted 12 December 2002 22:49

Semper Fi,
Sorry if this isn't the "Reader's Digest" version.

My "Lyme journey" is very similar to other stories you have read or heard. I was infected some time in the mid 80's.

Actually remember picking the tick off my back and being amazed at how tiny it was and what a big welt it left. I had never heard of LD so I never did go to a doctor. I kept an eye on the bite to make sure is didn't get infected and it didn't. Case closed. Or so I thought.

Through the years, I had bouts of stiff necks, sore joints, etc. Tylenol made the pain go away. So again, I did not see a doctor. After all, why see a doctor for only a stiff neck?

These symptoms progressed to panic attacks, heart palpitations, and numbness in my jaw in down one side of my body. The panic attacks were so severe they very nearly made me housebound. I could barely drive my car one mile to the bank but I refused to give in to this and continued driving. If I drove 50 feet with no panic attack, I considered it a victory in my favor. It took years to get my driving confidence back.

Now I finally went to the doctor who diagnosed me with mitral valve prolapse. I went on beta blockers and nothing helped my symptoms. My panic attacks kept getting worse. I went through 6 different prescriptions and none of them made the palpitations and panic go away.

The palpications were so severe at times, they would made my body lurch. I quit my job because I was no longer able to make the drive to work or stay awake.

My doctor was getting frustrated. As a last resort I was asked if I was ever bitten by a tick. I asked him, "what the hell kind of question is that...I live in Ocean County, NJ...of course I've been bitten by ticks!"

Then I remembered the bite I had described earlier and told the doctor about it. His jaw dropped, then he polled me on some of the symptoms on Burrascano's list and I said yes to about 75% of them. I was then told I most likely had Lyme Disease and he apologized profusely for not asking me about tick bites sooner.

They had seen several patients in the office with symptoms similar to mine who had Lyme, so he felt good about the clinical diagnosis (this was 1988). He had some blood drawn and gave me a prescription for doxycycline - 200 mg / day. Remember this was the late 80's and they weren't prescribing dosages higher than that back then.

Within 48 hours of taking my first dose, my symptoms disappeared. They returned a few days later, but at least we knew what we were dealing with. The test results showed borderline Lyme.

I could not tolerate the doxy too well. It made me nauseaous. But even that was preferable to how lousy I had been feeling. Can you imagine that? I was willing to put up with being nauseous! I was switched to Ceftin after a followup visit. It wasn't doing much for my neuro symptoms. The doctor recommended IV Rocephin. I did 3 weeks of that and felt pretty good. I went back on Ceftin after I finished the 3-week course. My neuro symptoms returned. They tried me on Claforan. I lasted with that for about 10 days when I broke out in hives.

I had to continue with oral antibiotics through all that but I don't recall what I was on. After that the antibiotic trail gets a little fuzzy in my memory, but these are the drugs I have taken: Roxithromycin (Rulid), Suprax, Zithromax. High doses of these expensive medications helped my life return to normal somewhat. (I did return to work, BTW)

The yeast infections were horrendous. Diflucan came out too late in the game and the acidophilus caps at the time just weren't cutting it.

Prior to my recovery with the shots (you can check that story out of page 1 of this thread) I had been pulsing Zithromax. My schedule was 3 weeks on and 1 week off. It was during the 1 week off that I got those shots from the military.

During my whole ordeal I tried anything and everything I could to help my immune system: castor oil packs, saunas, hot baths, different herbal concoctions, etc. I also consulted a homeopath. I did meditation, read motivational books, etc. Basically I changed my whole way of thinking: instead of concentrating on what was wrong with my life, I focused on what was right.

I got reinfected at least two more times after I had gone off the antibiotics, but these infections never took hold. My body seemed to handle them with the treatment protocol by my LLMD: a shot of Rocephin in the butt followed by 28 days of Zithromax.
My LLMD, through the years has really gotten up to speed on taking supplements and these have also helped tremendously.

As a matter of fact, I'm completely off beta blockers now for the mitral valve prolapse and am controlling it with magnesium.

Well, if you have gotten this far in my sordid tale of my Lyme ordeal, you have a longer attention span than I do.

Like I said, it CAN be beaten!
Linda

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posted 14 December 2003 19:41

My husband and I have been treated for lyme for the past 6 months. He was tested after my Igenex test came back positive. Although his symptoms were never as severe as mine-he too test positive and started treatment.

After 6 months of doing Monastery of Herbs, and several things to detox, his tests have all come back negative as of this week. (He did not have any issues with mercury however)

This is great news as I feel one step closer to recovering. I am doing a bit more that he had to do but am hopeful.

Our LLDM uses ART testing, but upon our request also rechecks through blood work. We just want to double check every step of the way.

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posted 09 December 2003

My 23 year old son is actually cleaning his room! Because he wants to. So he can exercise!

This is a kid who has never in his life voluntarily cleaned his room, and who is allergic to exercise.

He's been depressed and angry for years, but two months on abx is starting to change his life.

He's telling me that his ability to think and care about things is coming back to him. He had just assumed that the depression was part of who he was, and doctors had always agreed. Antidepressants never helped.

He dropped out of a presigious college because he was "bored", but now he realizes he had lost his ability to concentrate and process new information, and the boredom was a protection against facing that.

He's starting to think about going to college again, and what he wants to do with the rest of his life.

I am so grateful to cave76, who informed me about Lyme disease, and initiated our treatment. I never could have imagined such a simple thing as antibiotics could have the ability to transform my son's life.

Now I'm waiting in line for the next miracle.

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posted 30 December 2003 21:15

My daughter relapsed from lyme disease recently, she was bit in 1999 and was late-stage, seronegative (until recently). She was finally treated in 2001 and eventually became symptom free. I thought (hoped) we won the battle.

She has been dealing with psychiatric problems all year which was diagnosed as post traumatic stress disorder from abuse by her deceased father. She did have this before being bit, so I accepted the diagnosis. She went to the psychiatric hospital twice this fall and even had hallucinations and was self-mutilating. I wondered if it could all be lyme but didn't push it because there were no other physical signs.

Well, after being released the second time her lyme symtpoms returned. We only went to the LLMD Dec 18 and as of today she is so much better!! She herx'ed right away but as of today the "irritable bowel" is gone, headaches gone, her depression and energy level is way better and she's actually been horseplaying with her brother all night.

It's only been 2 weeks! Of course the lyme pain still comes and knees are sore but it's so nice to see improvement both physically and mentally. The first time it took 8 months and major herxing for her to get well, it looks like this time it will go quicker.

At our LLMD's office I read the good-housekeeping article that came out about the girl with psychiatric problems that really had lyme and wonder how bad it would have gotten if I didn't know to take her to a LLMD. I worry how many other kids dealing with psychiatric problems really just have lyme. How will their parents ever know??

They tried to hard to diagnose my daughter with a "conversion disorder" after she got bit. I am so sure this happens to other kids.

I wish we had all the answers to this horrible illness. I hope and pray that someday the answers will come.

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thanks so much for posting these - I do think that these stories are crucial for newbies and those of us who arent so new!!

As usual you have gone out of your way to supply us with awesome information and I thank you so much!!

love,
N.E.
 

posted 11 October 2003 10:29

Good Morning everyone!

It is so nice to finally write that and really mean it!

Just thought I would share a little good news for a change of pace. It's been almost 5 weeks on IV Rocephin now, and I have to say that I am feeling better than I have in 10 months.

My symptom list has dwindled down to just a few now and I am starting to believe that there must be an end in sight again!

I've been able to drop the Rx Zonegran for my constant headaches, and have put the Tei Fu lotion and heating pad away on a shelf!
Oh, and the frozen bag of broccoli that once was my constant summer companion for my head has been cooked up...and I enjoyed every bite.

The extreme fatigue has let up also and now I am awake more hours during the day than asleep. My sandman has become nocturnal as expected once again.

After 15 1/2 years of being infected and 7 months of treatment...I just want to pass on some hope to those of you who are feeling like there is very little.

Yes, I still have a long way to go, but now I KNOW without reservation that I will get there!

My sincerest appreciation to those of you who have offered wisdom, support, comfort, and love along this road to wellness. Each one of you has helped more than I could ever express.

Melanie

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C O L O R A D O * S U P P O R T * S Y S T E M
[email protected]

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This is just what we need to start the New Year -- HOPE -- Thank you a million times over for posting these wonderful success stories.

And, Melanie, congratulations, on your very own success story! I can see a Lyme-free future, and it's looking brighter and brighter!

Hugs,

lifeline
 

posted 30 September 2002 18:22

Yes, yes, yes....my son and I just returned from our appointment with our LLMD. My son, who has always had problems gaining weight and muscle, has gained 16 lbs. mostly muscle, since the end of May, and has zero symptoms of Lyme after only eight months on the antibiotics.

I have also made tremendous progress in only one year. Dr. suggest we maybe getting off antibiotics within the up coming year. No we will not be cured....the bacteria probably will never leave our bodies, however we can live in harmony with one another. Of course, we will have to use common sense in our lifestyle choices....and continue on a healthy diet, with vitamin supplementation and exercise a daily concern.

Also, a positive attitude and trying to find something funny in your life everyday helps.

SandiB

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posted 30 September 2002 20:38

I'm better! As SandiB said, it may be that the infections are still in our bodies, but I worked hard at overcoming the 3 relapses I had. So far, so good, since May.

Best of luck to you, and NEVER give up!
love dharma

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posted 06 October 2002 23:57

Mine is a wonderful success story - the steps to get there were not for the faint at heart. Long and tedious and believing in a physician with great courage and the patience of a saint, swimming against the stream.

Some of the details are scattered over the few hundred and some posts on this board. They really come down to one basic chore:
Clean out the body. I only started to heal when I took my doctor's comments seriously -- "85% of all disease starts in the mouth!"
Hope a few more people take it seriously, because without that, fighting Lyme is a never-ending battle.

Take care

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posted 18 October 2002 23:25

I can't tell you how good I feel right now...if I never beat this disease, at least God (with the help of doctor J) has healed my daughter, after she was born with lyme, and then reinfected with lyme, babs, and erlichia!

We had our appt. today, and he said it was a day and night improvement since the first time he saw her 18 months ago. He said she looked "very good," and told us to stop abx, and keep her off unless she has any problems....

He also redid her WB and babs tests, just to be sure, but I now know that there is hope!

All you mothers out there with lyme kids...take heart! They can beat this!

P.S. He did say that when she goes to start a family, she needed to have a WB done- if it's positive, she will need to do abx during the pregnancy and not breastfeed, just to be safe.

Thanks to everyone for your prayers and kind words during her horrid illness...you had a very intricate part in her recovery- without this site, she would not have been treated properly!!!!

I thank God for using you..........
XXOO,

kristin (and Abigail Grace)

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posted 27 November 2002 11:57

Jon,
I totally agree that some positives will help. One of the problems we've noticed about Lyme disease (or any chronic illness) is that the people who have success and recover simply go away and the ones who remain are either continuing to struggle with their illness or are the recently ill and attempting to educate themselves and gain support. Therefore we see far too few success stories and positive outcomes.

So, here's my positive post: I am so thankful that my daughter, Lori, has recovered from this horrible disease and has now been essentially symptom free for almost 3 years. You can read her story at: http://www.angelfire.com/nj/lorib/
------------------
Lou B.

[This message has been edited by Melanie Reber (edited 04 January 2004).]
 

posted 27 November 2002 15:25

I think Lou is right-- people get better, and go about their lives, so that we don't often hear that side of things. I'm still around, at least from time to time, because I remember how much the encouragement meant to me when I got here.

Here's mY story. It is still unfinished, but so far, it is one of the good ones:
I trace my Lyme back to 1987, but during the years I was diagnosed with mono, suspected to have MS, depression, finally diagnosed with CFS. But I kept getting sicker.

A year ago I was so sick I was frightened. I had been going downhill for years, and it was accelerating to the point I had become incapable of living by myself, was almost entirely housebound, and increasingly bedbound.

Sometimes it was all I could do to take care of my immediate physical needs. I had severe tendonitis, ibs, was unable to be around more than 2 people at a time, watch tv, or read any but simple things because I could not concentrate. I lived in fog and pain.

I finally was able to convince a pcp to send my sample to Igenex-- some of you long-timers might remember me from then, because it was you-all who guided me through this, and the next steps of finding an LLMD.
I started treatment almost exactly eight months ago. I have been getting steadily better since, though of course with all the ups and downs that goes with recovery from Lyme (and, it turned out, a couple other TBDs).

Here is where I am now:

Monday evening, I participated in a communtity event with over 100 people in a school gym, the culminaton of 4 weeks of small group meetings. I talked lucidly with dozens of people, (cheated and ate a cookie), and volunteered to work on a task force to create a community recreation program and other community-building projects. For the first time in many years, I feel I can make a commitment to doing something like that, and be able to follow through.

The next morning, I babysat my granddaughter while my daughter went to an emergency dentist appt and did Thanksgiving shopping. I crashed in the afternoon, but was still able to stay up to watch Frasier on tv, and then keep watch so that the delinquents next door didn't throw things at our house to wake up my toddler granddaughter (sadly, a routine occurance).

Today I did laundry, folded clothes, played with my granddaughter, gave my son-in-law a hard time, wrote down all my old Thanksgiving recipes for my daughter. Now I am having my regular afternoon rest (still a must).

Tomorrow I will help my daughter prepare a quiet, traditional dinner with just my family, and then get lots of rest, because Friday I have a long drive to see my LLMD.

This all amazes me. It is far more than I ever expected. And it keeps improving. I am nearly pain free except when I herx. The herxes are much lighter-- I have not had one in weeks that put me in bed for the day, though I felt ucky.

I read the paper clear through daily, subscribe to several magazines again, which I read a bit at a time, because I am still in the process of rebuilding my cognitive abilities. I manage the VtLyme list, maintain two websites, and am beginning to write essays, fiction, and poetry in dribs and drabbles again.

I go for walks, which are getting longer, occasionally break into a run just for the heck of it. I chase my granddaughter through the house playing. Once a week I do "light" shopping. My family and I go on regular outings, and though I do get tired, I no longer have to spend two days in bed recovering.

No, I'm not completely well, yet. And I still have an occasional out-and-out sucky day. But I am living my life again, making friends, reaching out into the world. I am no longer isolated inside my illness.

I don't know if I'll be able to go back to work, but it is something I dream about, and am beginning to think it might be possible, if only part-time. We'll see.

In ten days I'll be 60 years old. What joy I feel that though I've lost my middle years, I have a healthy and active old age to look forward to. And next June my sixth grandchild will be born. And I am beginning to be able to be the kind of grandmother I always wanted to be.

I also still need you all. This is a huge transition in my life: from invalid to reclaiming health, and I need to share that with others who are also going through this process, with all the hopes and uncertainties it entails. I still experience both of those feelings, and everything in between. But, more and more, simple gratitude that after all those years, and all that loss, I am recovering, and have a life again.

Love and hugs to all of you,
and especially-- thanks!

Dayle Ann

[This message has been edited by Melanie Reber (edited 04 January 2004).]
 

[This message has been edited by TX Lyme Mom (edited 22 March 2004).]
 

posted 24 July 2002 19:40

Some llmd's will say that you can walk away from this cured, others just say you get the numbers down to a level your body can manage...either way a positive mental outlook is the best weapon (along with everything else you and your doctor decide to do) dont ever think you cant get over this..keep fighting..I have come a long way and will soon go off abx's .. The bottom line is no one knows for sure but I know people who are symptom free and off drugs...thats all any of us really wants...greg

[This message has been edited by Melanie Reber (edited 04 January 2004).]
 

posted 22 August 2002 13:47

I started treatment the day i found my rash. I had eight weeks of amoxil in dose amt suggested in Dr Burrascano's guidelines and symptoms didnt go away until seventh week. This month is two years since the bite and I have had no symptoms since. Dont know if its gone for good so i am watching. If you arent seeing an LLMD, please ask for the name of one in your area. Someone here will gladly give you their names. You only have one chance to treat it correctly early! I also suggest you arm yourself with as much knowledge as possible about Lyme.

Best of Luck.

[This message has been edited by Melanie Reber (edited 04 January 2004).]
 

posted 06 June 2003 13:01

I would say that I am in remmission. I have been symptom free and off of meds for over 4 months now.

My main drug of choice was Zithromax. It gave me my life back.

But I also tried other antibiotics. I am severly allergic to Doxy so that was not an option. I have always done orals and never iv.

I was infected in April of 1999 and misdiagnosed with a spider bite. I got treatment almost a year later. It took about 3 1/2 years to get better.

I dont know if I am totally cured (I dont know if any of us truly know this) but I do feel alright.

Kara

[This message has been edited by Melanie Reber (edited 04 January 2004).]
 

posted 06 June 2003 16:49

After having Lyme/Babesia for 27 years,
I think I'm in "remission".

Diagnosed last October - and receiving
treatment for Lyme/Babs thru the winter

I feel better than I have in 25 years (I'm 54). I have no pain anywhere, and ALL my symptoms are gone except some inflammation inside my right eye (and that's 70% better than it was).

I'm not positive ALL the bacteria is killed, but we live with a myriad of bacteria and viruses anyway and everything's balanced by the immune system.

I'll be happy if it stays repressed the same way the other microbes in our bodys are.

Barb

[This message has been edited by Melanie Reber (edited 04 January 2004).]
 

posted 07 June 2003 17:11

Yes, I have my story is long but here it is for you.

I am 100% today!!

About three years ago(or longer) I got lyme disease and didn't get a rash and my symptoms came on slow because of my immune System and I didn't know I had lyme then.I am on Rocephin IV treatment and it is working great I am almost 80% better and on for 12 weeks only I was orals for three month's and no improvements at all.

I went to this great Doctor in nov 2000 and I am on the way to recovery thanks to him!!!!

I have lost 60 pounds (I was a little over weight when health I am 160 but was like 190 when I got sick) because of this disease and it was no fun at all I was down to 130 pounds because I was throwing up everyday and the other doctor said it was stress!!!!!!

some of my other problems are memory and fatigue,dizziness,confusion,difficulty thinking,difficulty concentrating and reading slurred speech, mood swings, irritability,
feeling as if Iwas losing my mind,insomnia, nausea, upset stomach, sensitivity to light,diarrhea,numbness,unexplained shaking,balance problems....

listen to these people they know what they are talking about!!

[This message has been edited by Melanie Reber (edited 04 January 2004).]
 

They are all showing up with today's date in the dateline -- which doesn't coincide with the contents of some of the stories which contain various dates within them.

This only matters if someone is trying to figure out how long it took for a particular person to turn around, but to someone who is feeling frustrated and hopeless, then those dates really do take on a lot more significance.

You're a smart gal with lots of computer skills, so I'll bet you'll be able to fix this minor glitch quite easily -- if it's not asking too much.

Thanks in advance.
 

Isn't that JUST like a ``Mom'' for you???

Never satisfied!

Could you NOT have suggested this BEFORE I was finished?

After reading all of these stories of hope...
I was just going to go take a little nap and dream of the future...after TBDs.

Now...she wants MORE!?!

OK...OK...
``minor glitch''

Since you did ask me politely and complimentary at that...

I will go back digging and TRY to find all of the dates.

But first...

A little rest is required right now for me.
(sorry, but my hands are shaking too much at present)

PS...
Thanks for your ``Sweetheart's'' Story

------------------
C O L O R A D O * S U P P O R T * S Y S T E M
[email protected]
 

Of course, you should take a break. Take as long as you like.

Sorry I didn't "thunk" of it sooner, but having an accurate dateline for each story really would add a nice little detail and finishing touch to such a wonderful topic.

Just please know that all your efforts are very much appreciated. I'm sure you do, of course, but it's good to repeat it anyway.

 

Thanks so much for posting these stories. We've needed something like this for a long time.

I'll be adding my story to the list someday. Nearly there.
 

Bigs hugs to you....Beverly

------------------

 

I went to bed early last night, and when I woke up this morning, all the articles now have datelines to indicate when they were originally first posted.

Now, though, I guess that as a "Mom" I need to chide you again -- for overworking too much, instead of taking care of yourself first.

You really should have rested longer, you know that, don't you?

Thanks ever so much, Melanie. Nice job, well done.

I know that soon, we will each be adding our own stories of success to the rest.

"Hope has conspired with the wind...

and blown away

the demons of despair" -Maya Angelou

------------------
C O L O R A D O * S U P P O R T * S Y S T E M
[email protected]
 

------------------
C O L O R A D O * S U P P O R T * S Y S T E M
[email protected]
 

One thing that I cant get over, is what a powerful and wonderful group of people here who give prayer support to patients and their families, who give "love" support all the time, and go the extra mile....even when they dont have the energy to do so!

I think the best success story in all of this is the profound relationships that are being built, and to know that we will always and forever be grateful the the members of this board regardless of the outcome.

[This message has been edited by Lishs mom (edited 07 January 2004).]
 

The whole idea here of posting Success Stories is to give a glimmer of hope to folks who are first starting out on their healing journey when they are so scared and almost afraid to dare to hope. Stories of courage in the face of overwhelming odds which have brought about even partial success, such as theirs, will be appreciated by these individuals.

With that same spirit in mind, I decided to go ahead and write up a first "rough draft" version of our daughter's story -- which I expect to amend probably many times before it's finished.

Please ask her to reconsider her request, before deleting that one, because those of us who remember how far they have come are encouraged by their progress.
 

I figured I could add this myself. I'll make it short as possible.

I don't know when I was bit by a tick. I could have been bitten zillions of times and not known it. I did have a tick on my head when I was 12 that mom pulled off. Sincerely though, I think

I was reinfected the time I not only adopted a dog from the local shelter, but also when I went camping just a week after doing THAT. That is when I became very ill. I actually have a picture of a tick that I took

while I was camping. Hey, it was blue and gray and I was amazed at it- and had no clue it was a tick. That was in May of 2002.

From May 2002-September 2002, I was plagued with mere annoyances, truly. Bronchitis, laryngitis, fluid in ears, ear infections, etc. One antibiotic would be given and the next infection would set in.

In september of 2002, I had to go the woman doctor because of severe pain in the groin area. I was tested for everything under the sun and given a Zpac of Zithromax "just in case" even though everything came up neg.

I didnt take the Zpac right away. It actually set on my table for about a week. One morning, I woke up, felt AWESOME and actually exercised, etc. I had more energy than I knew what to do with. I figured what coudl it hurt if I took that zpac?

I took it and went to work. Four hours later, I had vertigo, a severe migraine, disorientation, numbness going down my left arm, and confusion. Er said "inner ear infection they couldnt see". Family doc said "viral meningitis". Both negative.

These symptoms lasted for two weeks before they ended, only to come back a month later with a vengeance. I had a migraine, and vertigo for five months straight, every second of the day. I had so many tests done, my family joked I was radioactive.

I was misdiagnosed with a tumor, migraines, ear problems, and finally, when all those showed negative, depression, anxiety or some other "neuro problem of unknown origin".

By the time I was diagnosed, my migraines were so severe I was having nose bleeds, was still experiences on and off vertigo although it did subsided on its own a bit, apnea, heart problems, some joint problems, brain fog, spaceyness ( worst for me) and many many more symptoms. I lost 30 lbs and couldnt get out of bed. I dropped out of college and quit my job, only so I could "sleep away my life". I didnt want to live but I didnt want to take my life either.

After 9 months of treatment, I no longer have those symptoms unless I am herxing. I was with a former LLMD who completely missed bartonella adn babesia. Since being with a new LLMD, I skyrocketed to back to health.

Im back at work and just signed up to take classes again so I can finish my degree. Im no where near done. I still have different forms to combat, and yeast to battle and art testing to see what else I am harboring. IN the meantime,

as long as I am not herxing, Im one happy person. I slid by the past two months without any exabberation aroudn the evil womans time. I propose that that is also a very good sign.

I can drive again, and play with my kids.
The herxes are still pretty strong, but only last a day to three in comparison to the 11 to 13 that they used to. Still strong, just less duration.

Ive used NOTHING but abx and rife.

------------------
oops!
Lymetutu

 

A year ago, I could not move my left arm due to synovitis and multiple joint pain that kept me awake at night. I often had to retreat to bed from fatigue. I could not walk up my stairs without extreme effort. I had the full gamut of neurological involvement, from insomnia and cognitive processing problems, memory loss, hallucinations, psychiatric symptoms looking like PTSD, agoraphobia, panic disorder, and depression, shooting pains, facial and ear pain, hypoglycemia at coma levels, and much more.

Today I can walk for miles, ski for hours, do household chores, perform my work, and everyone who sees me remarks on how well I look. I would say I am 85%. I still have neuropathy and have to take anti-seizure meds and Mobic for inflammation. I have occasional memory black holes and word-flipping errors when stressed. I am on my third round of orals, but no anti-depressants, and my mood is just fine, thank you.

I went undiagnosed for four years, and when I finally came to Lymenet and saw my same symptoms being discussed by many similarly afflicted, I knew I had found the culprit. I went to a LLMD, told him about my big red rash that I once thought was insignificant. He took a history of my symptoms, ran tests or looked at recent ones done by others --Western Blot, PCR, MRI, SPECT Scan, echocardiogram-- all confirmed my diagnosis of neuroborreliosis.

I am not cured entirely, but the level of my progress allows me to resume nearly a normal life--doing what I enjoy. I am not quite up to driving speed, but someday soon, I will be, I think. I tend to think I will have to manage this for life, that I will never be 100% "safe" in thinking I am cured. But if I can manage it at this level, I will continue to be a functioning, tax-paying member of society again.

Pooch
 

Katydid
Frequent Contributor

Posts: 1727
From: El Paso, Texas
Registered: May 2001
posted 16 February 2004 11:53 Hi everyone,

I'm doing well these days after a long long haul. It scares me to post this because it always seems that when I brag about doing well, I have a little set-back. But I'm going to take my chances.

I was bitten by a tick in late 1993 and have been sick since. Doctors didn't know what the multiple EM rashes indicated, unfortunately, so I didn't get diagnosed until 2000 after multiple positive tests for Lyme, Babesia, Ehrlichia (HME). I'd had cancer treatment in 1997 which crashed my immune system and allowed these infections to flourish.

A combination of antibiotics and heparin injections, and complementary modalites including Rife and FIR sauna and energetic medicine have helped me return to a place of feeling better than I have in years. I don't consider myself "cured" --at least not yet-- but I feel really good.

My white blood count has returned to a normal level after being abnormally low for the last six years -- and I've finally begun to regain weight and am now back at my old pre-illness "fighting weight". My oncologist was pleasantly surprised at my last couple of check-ups by both of these events.

The things that helped me most but not necessarily in the order of importance:

1. 4 months of oral doxy (perhaps targeted ehrlichia and borrelia)

I took several other antibiotics including IV rocephin (4 and 1/2 months) but they just didn't seem to help at all.

2. 9 months of heparin injections.

It didn't seem to be doing much during the treatments and I wanted to quit the whole time I was on it. My patient LLMD listened to me whine and encouraged me to stay on it. Boy am I glad he did.

Unbelievably, it seems to have cured a long-standing chronic gastrointestinal inflammation that contributed to my overall illness. This wasn't what I expected but was a tremendous boost to my health and helped me avoid major surgery. There is information on the internet about this effect of heparin if you are interested -- just search for heparin and crohn's or ulcerative colitis.

3. Clindamycin and quinine and artemesinin -- apparently, babesia was a big problem for me because I started feeling better almost immediately. Mepron and zith were less effective or so it seemed.

4. Rife -- I was skeptical when I started this but could tell from the first session that it was helping me.

BTW, I'm going to be selling my Rife-Bare device and portable FIR sauna in the very near future so if anyone is interested, give me a holler and I'll give you a shot at it before posting it on ebay.

5. Antioxidants and flavanoids of varying types and shades (eat your veggies and fruits!)

6. Various types of energetic medicine including Healing Touch (like Therapeutic Touch), Qigong and TaiChi (helped with balance problems if nothing else) and other hot topics which I want go into here because I don't want the thread to turn into a free-for-all.

If anyone has questions about any of this just post or email me. Healing wishes to all of you!

I will keep this very short and sweet.

Untreated, one year plus.
Treatment, a good part of a year.

Competely cured of all Symptoms.
Off abx over one year.
I attribute at least part of my recovery to abx, mental attitude, rest, diet,
supplements, mercury removal, detox, working out when well enough.

Regards, Jon

Keep the faith

Its all about everything.
I dont know of anyone who has recovered from any one thing.

 

Great Idea to give others hope!

Most here know my story, I'll keep it short.

Aug 2002 DX with Lyme. Chronic Lyme.

After 16 doctors and many treatments......

July 2003 I have been off ABX & Fargmin shots.

I still watch my health, take vitamins & Enzymes.

I work anywhere from 10 to 14 hours a day.

There is life after Lyme.

There is not one set of rules to get your health back.

Faith,hope and.....Determination in what you know of how you are succeeding or failing will take you to the next step.

Kat
 

But...

please don't feel as if you need to make them brief...we enjoy reading all of the JUICY details, OK?

Thanks Betsy for adding Katydid's story!

------------------
C O L O R A D O * S U P P O R T * S Y S T E M
[email protected]
 

I don't know if you were referring to me or who but.....in all fairness in what your are trying to accomplish....I do not want to ruin your thread.

My treatment brings about to much Controversy and arguments.

If anyone wants to read about my treatment they can go to search for Oct 7th 2002 or look it up by my name and read my post I did from Europe during my treatment.

I was one of under 10 I believe at that time to experience that treatment. To report it as I saw fit.

It get's overwhelming at times....and sometimes I feel guilty for what I got ( in my health) that others did not.

You are a sweetheart for what you are trying to do.

Just let it be that, Lyme can be overcome.

However you find it.

Thank you for caring, thank you for giving to others.

Kat

[This message has been edited by Kathy Boss (edited 17 February 2004).]
 

I do know all about your story...and it has been a very long and very painful pursuit for health for you. It makes my heart happy to know now that you are well.

But, I think the measures that you incorporated, although controversial to some, were fascinating! And, I think it was incredibly brave of you to do what you did!!!

I won't ask you to repeat it here if you do not wish to do so, but, thank you for the reference dates, so that others who are curious can look it all up and learn from your hard fought battle.

Wishing you continued good health,
Melanie
 

I say this humbly, realizing that perceptions are always in the eyes of the beholder. However, I feel that it is terribly important to pay attention to this aspect of Kathy's triumph over her very severe health crises. Her LLMD was the one who helped her with this part of her successful recovery. She is one lucky gal, and her story is very instructive.

Thanks to Kathy for pointing us to it in the manner in which she did, since the ICHT therapy is no longer available, due to safety issues regarding the death of another patient at the clinic in Italy where she was treated, so that the clinic was subsequently shut down. That's why I can't help but feel that the hypercoagulation issue which Kathy dealt with so successfully, thanks to her LLMD, was such an important part of her amazing recovery.

I hope I'm not infringing upon Kathy's story here, to interject this opinion, but for the sake of others who are seeking answers, I feel that it is very important Not to overlook this aspect of Kathy's wonderful recovery story.

PS to Kathy,
If you read this and disagree, please feel free to state your objections because afterall, this IS Your story. I sincerely hope I've not offended you by inserting my personal viewpoint here, regarding what I gleaned from your case history.

We're all in this together, you know, and I want as much as you do for others to have an equally good outcome as the one you have enjoyed. So, it won't hurt my feeling one little whit if you write an objection or counter my version of what I think was a major contributing factor in your successful recovery.

I sincerely hope I have not overstepped any boundaries to interject my thoughts about your case here, so please forgive me if I might have done so.

Excellent idea to compile sucess stories:

Here's an addendum to mine:

For those of you who are new to the site:

There is hope. I was sick almost 30 years.

My initial presentation was in 1975.
I was diagnosed with Lupus in 1978, then it was retracted when I didn't die as expected -
(I have alwayd refused cortcoidsteroids).

Over the next 25 years I was suspected of having, Autoimmune heymolytic anemia, Fibromyliga, MS, Sarcoidosis, and finally Complex Auto-immune Disorder - culminating in severe neuro complications, most notably severe and chronic Uveitis and Optic nerve inflammation starting in 1996.

In 2002, after an argument with my Opthalmologist when he wanted another Syphilis test (I'd been negative on 4 previously) because late stage syphilis was the latested suspect of causing my eye probelms I tested positive for Lyme and Babesia.

The rest is history.. after a year and a half of several antibiotics, antibiotic combos, anti-Malaria therapy and many many supplements I am feeling 100% with absolutely no symptoms - and I had every Lyme symptom except seizures and palsy.

Medicine, with all it's diagnostic faluts is alot more open minded today than it was in the 70's and 80's when the patient had NO control, NO rights and medical records were the property of the Dr.

And for those of you using alternative therapies - keep using them with an educated mind.
I kept my self alive and functioning using alternative therapies prior to finding the real diagnosis, and adding antibiotics to my mix.

You CAN reach good health.
Best to you all,
Barb Peck
 

anyway, I'll never be sure how much permanent effect Lyme had. It did waste alot of very productive time for me, though. And there's a;ways the possibility of relapse; you can never be sure. Not only that- unlike mono,-- even a really bad case of which is a piece of cake compared to lyme, by the way-- you can get it again. But now, at least I know what to do if I get bitten again.
But there IS HOPE! It's a sucky disease indeed, but I'd rather have lyme than two other diseases I can think of....
DaveS

 

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Posted by LaureenP (Member # 5052) on :
 
Thank you for doing this. It is good to know that LD can be cured.
I read so many posts by persons telling me "get ready for a bumpy ride" and to prepare for chronic illness etc., "the worse is yet to come..." that I was beginning to get really freaked.
I would hate to think I am doing my IV treatment for nothing!
Good to hear some positive stuff for a change.
 

---

Posted by Lishs mom (Member # 2344) on :
 
Melanie- can you please help me out? I was going to post my "milepost" but I cant find it. Can you give me the link to that?
Thanks
Theresa
 

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Posted by Melanie Reber (Member # 3707) on :
 
Yes Theresa,

I would love for you to add that here...I'll go digging now and see if I can find it...be right back...

OK...just emailed the link to you so you could post it yourself!!!

M

[This message has been edited by Melanie Reber (edited 29 March 2004).]
 

---

Posted by Lishs mom (Member # 2344) on :
 
I was reflecting today on our journey with lyme disease. Reflecting on the pain, the fear, the doubt....
....the ups, the downs, the sideways...and then the joys...

Its been a very long journey, some of you know us well, others are new here. When we started our journey it was full of hope, and we felt refreshed. Somewhere along the way, we found that many of those we spoke with three years ago, have gone on. Either became frustrated and quit, or became well and dont visit the board too often.

Those who became well, we quickly have forgotten about, and the board is filled with others who are too, just beginning the journey.

Those who became frustrated, began jumping from treatment to treatment in hopes of finding a cure. In hopes of living their dreams of a fullfilled life, free of pain, free of random thoughts on top of random thoughts that come so fast you forget the "main thought" which was not random at all...

While our journey is still in progress, I have been in prayer regarding sharing, being careful not to take the credit our selves, but to Thank God every day for the special people who have interceded in our daily life, to make it a bit better for us.

Dr. Jones, Sabra and his full staff. Some are no longer there, but we love them all. TinCup, LDA, and so many more. Ultimately God brought them in to our lives, and have helped heal us.

Today, I think back when we first got bit...and got sick. My gut said Lyme. My docter said no.

8 years later after almost loosing our 12 yr old daughter to congestive heart failure due to her arrhithmya from lyme disease, watching her hobble like an old lady, and crying her to sleep at night, holding her up in the day to do basic tasks like eating, and wondering if she would live another year (according to her neurologist and cardiologist she would not!) and not even knowing if I should pray for life, death or healing (we had prayed for healing for so long we began to think it was not Gods will) for my daughter....we found she had lyme, erlichia and babesia.

Our daughter had brief periods of remission during her 8 year ordeal, which brought hope. It also brought frustration, because they would be followed by bouts of health much worse that what we had already experienced.

After tincup so lovingly referred us...(yes, with a rolling pin in her hand ready to pop me over the head if I said no!).... to Dr. Jones, we knew that life would be much better.

To our surprise, we were terribly terribly wrong. Our daughter began treatment, and she became unable to be on her feet very long. Her pain now was about 30 on a scale of 1-10, 10 being the worst. The next 12 months of our lives were spent with her in bed nearly 22 hours a day. She cried at night...she cried at day and she tore our hearts apart. So many times I wanted to stop treatment...so many times she begged to stop treatment. But we all would remember the path we had been on.

We began to justify that path wasnt so bad...was it??? Not nearly this bad...

But 8 months in, we literally woke up one day with a daughter who was like all the other teens.
It lasted a short while, and she drifted back into her body riddle with pain. But this brief glimpse, was enough to carry us on with more demand for a healthy life.

I researched more, we spend thousands of dollars to see the best...and Dr. Jones patiently waited. Documenting small positive changes that were difficult for us to realize..

The many trips to the ER, became one long fuzzy year...and I began to doubt again. Was this ever going to end? Was this a big lie? Should we quit antibiotics?

I went to our Internal med doc, and asked her to do a full body scan. I KNEW my daughter must have cancer. Leukemia had been a possibility before her lyme diagnosis. Please check her again. I know we are dealing with something else. The gracious doctor did every test she could. She began implementing new pain therapies. But she told us, that she had seen improvement, even if we didnt.

She had faith in Dr. Jones, and Gods answers through doctor Jones, for healing for our daughter.

She kept us on track with the therapy, herself curious to see if "this would really work".

Our final "tempation" to stop all therapy came with the most severe, debilitating headache one could imagine. Our daughter would writhe in pain, after 100 mg of IV demerol, her body would continue to spasm from the severe pain in the spine and head. For nearly 6 weeks, we made the local er our every other night travel. They finally decided to do a spinal tap, to see if she had intracranial pressure. The spinal tap, although showed no signs of increased pressure, immediatly removed the headache, and she felt a warm sensation at the base of her head. Since that day, her headaches may begin, but relieve easily with over the counter pain medication. She has not been in the hospital with debilitating headaches since then and her body started to show significant healing.

She began physical therapy two weeks later, and has continued building her tissues that connect muscles and bones. Her pain is under control.

Yes she still gets tired, ....but wouldnt you after rock climbing 15 hours a week, e skating once or twice and week, AND doing your school work? Oh yeah, she is retaining her school work too!

Our road to recovery is still in progress. We attribute the excellent recovery so far to answers from prayer from many of you and us on behalf of our daughter, excellent doctors who really care,good diets, and a young lady who never gave up or jumped from protocol to protocol, but followed the LLMDS advice, even when it seemed the rock wall we were climbing was too tall with too few holds.

I know this is long, but I really wanted to share, to give hope, and to help those debating if they should continue or stop treatment, to choose the advice of their LLMD. I hope and pray for all of you on this board, that you will continue to heal.

Love,
Theresa

PS. I am waiting for horse show photos from this past weekend. I will post an addition to her success here when I get those back!

 

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Posted by Kathy Boss (Member # 3062) on :
 
Tx Lymemom,

I don't have a problem with you bringing up things at all. And now that you have, yes I will clear them up. I have reasons for not saying somethings, especially where my LLMD is concerned. So let's start......

First off, I would NEVER say anything bad or against my LLMD's judgement because he did what he thought was best and truly cared.

#1. I will always thank my LLMD for giving me a DX that got me going in the direction to save my life. It got me going in the direction of Lyme and pursuing answer's.

#2. Hypercoagulation was there BEFORE ICHT treatment. And I did see a Hematologist that said I did not have it BEFORE I went to ICHT.

#3. Yes, it got worse a month after ICHT. I had a $7,000 DNA test to show I did not have thrombosis but yet the Doc's still figured because of my chest pains and all the stringy stuff on my Darkfields showed fibren everywhere I should have DOUBLE BLOOD THINNERS.

#4. Double Blood thinners did not CURE anything. They made the blood stream thinner which in turn made it easier for the CANDIA & YEAST to move around.

#5. I used these two drug's for 8 months that I did not need them. Based on what was viewed in my LLMD's office. Plus, from the over use of them I became anemic from my red blood cells being robbed by the thinners.

#6. A Bradford Microscopy by a different doctor is what showed the REAL problem. CANDIDA & YEAST. I was taken off both blood thinners that day and ABX. What was misinterpret on the DARKFIELD showed up clear as a bell on the BRADFORD.

#7. I have been taking ENZYMES since that day 8 months ago and have not relapsed yet.

#8. I had another viewing 2 weeks ago and the CANDIDA is 75% gone, MYCOPLASMA now needs to be treated.

#9. ICHT I will say over & over again saved my life. My husband, my family, my co-workers will tell you the same.

#10. What one doctor did or didn't do I do not blame at all for ANYTHING. NO ONE has the answer's. I knew this going into it. I do not elaborate on my LLMD and mistakes that were made out of fairness for him and anyone else trying to get well.

In order........

LLMD DX me & got me started.

ICHT......Got rid of the LYME.

Pathologist....Found the Candida and got me off all meds.

I have 3 doctors to thank. If you did them in a different order what would have happened?

Would the Pathologist have DX me with LYME?
No.

Would the LLMD recommend ICHT? NO

Would ICHT found the CANDIDA? NO

So I can not blame one or the other for what or wasn't done or noticed.

I am just lucky that it happened in that order and thank God everyday for the life I get to enjoy one more blessed year.

Kat
 

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Posted by Kathy Boss (Member # 3062) on :
 
Tx Lyme Mom

Are you there?
 

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Posted by thomps14 (Member # 3334) on :
 
Hi folks,

I haven't been on this forum for many weeks, and feel badly about that. I always said that when I got better I would hang around here in case I could help others. But healthy living has a way of preoccupying you with other things -- such as the birth of my new daughter last week!

That's really a miracle to me. A year and a half ago, we couldn't have even thought about trying to have another baby. I was so sick that I was barely functioning as a father, and I feared I might never be well enough to risk having a child again.

Today, I'm virtually back to my old self. I still have constant ringing in my ears, and probably will always have (my ENT says permanent nerve damage). But I have said goodbye to about 25 other bizarre symptoms.

In a nutshell, I got sick in August of 2002. It was a sudden mystifying and terrifying deterioration. I was 35 and in great health -- active and busy. Then came ringing ears, bizarre neck stiffness, profound sleep disruption, late nigh panic attacks, strange rashes, extremely dry eyes and mouth, and sudden unexplained weight loss, crushing fatigue, etc. etc. -- all of which spiraled ever downward until I reached a point of desparation. At its worst, I would fade in and out of sleep with an overpowering sensation of heavy vibration deep inside my head. I felt my brain was under attack by some invisible enemy (as indeed it was).

I won't recount here the trauma of trying to get a diagnosis and doctors who would listen to me. Suffice it to say that I will be eternally grateful that a bulls-eye rash showed up on my leg to give me a clue (even though 4 doctors dismissed it before I found an LLMD).

I was on abx for 10 months with a rotating repertoire of regimens. I did great on amoxy for awhile, and then relapsed. I did weeks of doxy, flagyl, levaquin, and a few others I can't recall. I saw very marginal improvement (if any) and began to despair of a solution. Finally, my LLMD ordered IV Rocephin for me, and I eventually talked him into a 10 week dose. I finally saw some noticeable improvement. If there was such a thing as a turning point, it was this -- although the progress remained extremely slow. I followed up with some other orals for a couple of months, and finally felt right about going off of them.

That was 9 months ago. I now am off all prescription medications and am continuing to see improvements -- now to the point that I feel normal virtually all of the time. It's been about 3 months since I had any fatigue to speak of, and at least 2 months since I had that hallmark "buzzy" sensation that made me feel less than human.

Guess what! I feel human now!

The progress has been agonizingly slow, and there were countless days that I thought there WAS no progress, or that I was going backwards. I really have to look back many months to see the signs of the progress. Even after quitting abx, the improvement was almost imperceptibly gradual. But now, it is very clear.

I hope my experience can provide some encouragement for folks in the trenches of this terrible battle. Yes, I was very lucky to catch it soon enough that my recovery could happen within the span of a couple of years. I know others have much longer and more courageous battles ahead of them. But I'm convinced it's a battle worth fighting, and that hope is real and that victory is possible.

Please hang in there, everybody! The journey is long, but well worth it. I'm flooded with gratitude to be holding my new baby daughter. She's a testament to the rewards of the battle.

God bless! Life WILL BE good again!

Jeff
Pleasant Grove, UT

 

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Posted by Melanie Reber (Member # 3707) on :
 
Dearest Jeff,

Thank you so much for adding your wonderful story of success here!

Congratulations on BOTH accounts...the recovery from Lyme...and the re-birth of your new self...

All my best,
Melanie

------------------
C O L O R A D O * S U P P O R T * S Y S T E M
[email protected]
 

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Posted by frenchbraid (Member # 4225) on :
 
frenchbraid
Frequent Contributor
Posts: 854
From: Northwest, NJ USA
Registered: Jul 2003
posted 14 June 2004 10:58
--------------------------------------------------------------------------------
I get so many requests to know what we did to recover from Lyme. It sometimes becomes difficult to keep up with the emails and I thought it may help others if I put together a summary of what we've been through and some of the things that we have done.
I should start by saying that I went YEARS undiagnosed. Went from one doctor, to another, to specialists, had so many zillions of tests done - including a cardiac catheter and a colonoscopy. I can't count how many times I ended up in the ER because I thought I was having a heart attack. Still, no one ever even mentioned Lyme to me. I was at the doctor's office so often that my doctor actually said to me one time ``So, what is the problem this week?'' I was starting to think that maybe I WAS losing my mind (as he had implied by putting me on one antidepressant/antianxiety med after another.

On a daily basis I suffered from extreme fatigue, loss of balance, deep muscle pain, numbness of my face, hands and feet, severe abdominal pain, lack of motivation, joint pain (including TMJ), creepy crawly feelings on my scalp, twitching under my left eye, etc. etc. etc. Just walking out to the mail box would require a 2 hour recovery on the couch. Nothing seemed to relieve my symptoms.

I was forever online trying to find answers to my health issues. A long list of possible illnesses started popping up, but nothing really covered everything that I was going through.

I was always an active and healthy person and was declining so fast and I didn't even have the strength to do anything about it. I was so ill myself that I didn't even realize that the rest of my family was falling apart also. Infact, I was so ill that I didn't realize just how sick I was until I started to feel better.

But then, things changed. My youngest daughter had had 2 bulls eyes on her face 3 years earlier. She was treated with 30 days of high dose abx. We were told that she wouldn't need any further treatment. Well, she was fine after the abx and we never gave it a second thought. She was smart, active and very social. Suddenly, all of that came to a screeching halt. 3 years after her treatment, she started getting tremors, couldn't read 3 letter words, had no short term memory whatsoever and was waking in the middle of the night is dripping sweats.

I took her to the doctor and asked if this could be Lyme resurfacing. I was assured that it wasn't Lyme. I wasn't convinced. I came home and started doing research on Lyme symptoms and realized that not only did she have significant Lyme symptoms, but so did my older daughter, my husband and MYSELF!

Finally, an answer! I did some networking and found a ``tick center'' to take my family to. My oldest daughter and I tested positive via PCR on the first try. They found it in my urine, but not my blood. For her, they found it in her blood, but not her urine. My youngest daughter and husband repeatedly tested negative and they wouldn't treat them until they got a positive. (we did eventually move onto another doctor and got them treatment - and by the way finally did test positive)

But back to me.....I cried when I got the results. Not because I was sad. I was so happy to finally have an answer to all of my problems. Then I cried again because I started learning how serious Lyme is and how difficult it is to treat.

The one and only tick that I had ever had was over 20 years ago. Could that have been when it really all started? I vaguely remember being sick back then, but then continued on with a relatively healthy life after that. I also recall about 6 years ago being bombarded on the beach by biting flies. I ended up sicker than a dog. Was that it? Or was that the straw that broke the camels back? Who knows.

I was so scared and anxious to start treatment that when the doctor at the tick center said I would need to go straight to a PICC line due to my neuro symptoms, I never even batted an eye. My older daughter and I had our PICC lines inserted on the same day.

We did 56 days of IV Rocephin and oral Zithromax during that time. I had a slow, but steady improvement. Many of my symptoms had subsided, but I still had the numbness in my hands and the fatigue was slowly starting to return. They assured me that these symptoms would subside over time. I waited a few weeks and moved onto another Lyme doctor and also brought the rest of my crew with me. That is when my husband and other daughter finally started treatment.

The new Lyme doctor drew blood (which did come back still positive via Igenex), but in the meantime put me on 3,000mg Amoxicillian, 1,000mg Probenecid (to keep the abx in my blood stream longer) and 500mg Dynabac. By now I had started the beginnings of my 1,000's of hours of research and knew that I must start to rebuild and support my immune system. While on these abx, I started taking high doses of Garlic, B-100 Complex, Vitamin C, Astragalus Root, Maitake (mushroom), Flax Seed Oil, Milk Thistle, a quality multi-vitamin, Magnesium and a multi-probiotic.

We could no longer afford Dynabac for me, my husband and my youngest daughter, so I was switched to Tetra about 2 months into the treatment with the Amoxi and Probenecid. I stayed on orals for a total of 4 1/2 months. By then I knew that my abx life span had run out and that the only way to really get back on my feet was to continue to strengthen my immune system and to start cleansing all of the toxins and other junk that my body had accumulated over the years.

It was very clear to me by this point that Lyme was just one of the layers to my problems. My immune system was run down by other ``issues'' that I wasn't even aware of at the time and they needed to be addressed in order for my immune system to fully attack the Lyme.

We took everyone in my home off abx and continued to take immune boosting supplements. Then we started with a whole body cleanse. This clears out the colon, kidneys, bladder, lungs, etc. This gets the body ready for further cleanses by getting the route of departure cleared out.

Then we did a liver cleanse. Then we added in another colon cleanse because it became VERY obvious that we had more toxins being removed then our bodies could keep up with. Then we did a parasite cleanse, then back to the liver cleanse again and then parasite cleanse again.

We discovered during all of this time that Candida was playing a HUGE role in our illness. And I mean HUGE role. We cut out all garbage carbs and replaced them with good carbs, but in a low quantity.

We also started eating organic and whole foods. We thought we were relatively healthy eaters until we started breaking things down. We only eat organic, we avoid dairy and red meat and eat only organic boneless, skinless chicken breast. We don't eat anything that has been processed or preserved.

We also started using toothpaste WITHOUT fluoride. Fluoride is devastating on the immune system. We switched to just deodorant. No more antiperspirants for us. Why would we want to keep the toxins in? We only use organic shampoos, soaps, etc.

We are still getting our Candida under control and that will take a very long time. We are very aware of everything that we put in our mouths and notice a huge difference if we don't follow a healthy diet. I am personally working on strengthening my adrenals which took a huge blow from the undiagnosed illness.

I still need to address the metals and cavitations in my mouth, but the biological dentist told me that the grand total would be $17,500. So, that must wait for now.

We have suffered financially during all of this too. We don't have health insurance and as a result of all of the unnecessary tests, meds, etc., we had to file for bankruptcy. We are not letting that get us down. We are stronger as a family and as people individually. We feel better than we have in YEARS and are so much more aware of the little things around us.

We are about 98% better and have been abx free for 6 months now. My husband is back to his normal self, the little one is back in the Gifted and Talented Program, my oldest is a star Soccer player and I am just the happy mom/wife of my wonderful family.

I can't stress enough that a positive attitude is probably the most important ingredient to recovery. I know how devastating this disease is mentally, physically and financially. And, it is very, very difficult to rise above it when it seems like the rest of the world is busy having a life and doesn't have a clue what you are going through. But, you must know that deep down inside, you do have the strength and you will get your health back.

Stay Positive. Smile. People Care.

frenchbraid

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Stay positive. Smile. People care.
 

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Posted by frenchbraid (Member # 4225) on :
 
frenchbraid
Frequent Contributor
Posts: 854
From: Northwest, NJ USA
Registered: Jul 2003
posted 14 June 2004 19:30
--------------------------------------------------------------------------------
Hi Guys,
I'll try and address all of your questions, but if I miss one, please point it out and I'll repost again.

When we stopped abx, we were feeling better, but far from perfect. We had basically come to a standstill. We knew we had to take another direction or stay where we were for a very long time.

Most of the cleanses that we use are from RenewLife. Brenda Watson, PhD (www.RenewLife.com) is the developer of this fantastic, well rounded line. We use her CleanseMore (colon), CleanseSmart (whole body: lungs, liver, blood, colon, skin, kidneys, and lymphatic system) and Paragone (parasites). We will be using Candex for the Candida and we use our own liver cleanse. I've posted the recipe before, but I will cut and paste it here:

~~~~~~~

Liver cleanses can be pretty harsh. We have found one that works very well and it is very easy to handle.

Put the following in a blender:

~ One cup of fresh squeezed Citrus: use orange, grapefruit, tangerine, lemon, and/or lime. Make the combination as sour as possible. You can dilute this mixture with purified water.

~ One to two cloves of garlic.

~ One small piece of fresh ginger.

~ One tablespoon of organic olive oil.

~ Blend the above ingredients and drink immediately.

Follow with two cups of a cleansing teas, such as Jason Winters or dandelion tea.

It is preferable to do the liver flush drink in the morning on an empty stomach, and then wait an hour before eating.

It is suggested to do the liver flush four times a year (as the seasons change) or whenever you feel you need a boost. Five days in a row each time is recommended.

Also, a good quality Milk Thistle will help to keep your liver and gall bladder healthy.

A good tip is to put the fruit in the fridge the night before. It is much easier to tolerate the drink if it is chilled rather than room temperature.

~~~~~~~

I should also mention that I was diagnosed in late May of 2003. Our road has been a road with many bumps and 1000's of hours of research. I am very fortunate to have a ND locally who owns his own healthfood store. I am constantly in contact with him.

I also got involved with a homeopathic doctor. I also have a biological dentist.

My favorite expression to describe what we've been through is: "It's like an onion. You need to peel back each and every layer to get to the underlying dominant issue". Leave no stones unturned.

When I finally got real and realized that I wasn't the picture of health that I thought I was and that I could have parasites, Candida, etc., it was only then that the improvements became drastic.

Also, on a lighter note, after doing the liver cleanse, I will never be able to eat a gingerbread cookie again. But, that's OK. Too many of the wrong carbs anyway. LOL

frenchbraid

------------------
Stay positive. Smile. People care.
 

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Posted by kam (Member # 3410) on :
 

----------- RESERVED! -----------------------

 

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Posted by minoucat (Member # 5175) on :
 
Kam, that's great. Reckon I'll reserve this spot too, as well as moving this thread back up.

 

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Posted by Lishs mom (Member # 2344) on :
 
Just wanted to update on Lishs medical stuff
She is doing very well.
Has been since Oct that she was in the hospital...
She is rock climbing, is ranked reserve regional high point champion with her horse....(has the stamina to show again!)
and...has enjoyed the summer being a kid, running around, jet skiing when shes deaccessed, and has enjoyed a few days on the boat as well. Bought her waterskis this year, and she cant wait to get behind the boat on the days she is "deaccessed". Staying up with friends till 3 am, getting up at 9 am most mornings....and best of all....enjoying being a teenager!!!!!!!

Best of luck to all of you....hope your long slow recovery is met with the success of our long slow recoveries!

LOVE
The Lishka family!
 

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Posted by lookin4answers (Member # 4974) on :
 
This is great!

Up to the top to print and read later, thanks!

~Amanda

 

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Posted by lazerorca (Member # 4689) on :
 
reading these stories gives me hope. a lot of the times i wonder if I really even have lyme or if this is just an undiagnosed neuro disease of some sort. when i get through this, I will definitely make a long post for a success story.
 

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Posted by flyers999 (Member # 1397) on :
 
Came down with neurological symptoms in May of 2001. Main symptoms were heavy brain fog and chronic fatigue. Later on I developed periods of shortness of breath; rapid, pounding heartbeat; and a throbbing headache. My primary care physician suspected lyme, even though my blood tests were and always have been negative, and put me on 2 weeks of doxy. I do not recall a tick bite although I spend a lot of time walking in the woods.

Logged on to lymenet and found a llmd. I went to him for almost two years. He initially increased my dosage of doxy, and had me do a three week round of Flagyl(750 mg per day), and also put me on his own herbal concoction of medicine which is essentially a modification of the Zhang protocol among other things. Even some of the products he sold me had the Zhang label on them. In addition he also had me do rounds of mgn3, transfer factor, olive leaf extract, and a lot of other natural stuff. He has a vitamin shop in his office.

Looking back I realized I was herxing on the doxy but after six weeks, he switched me to Amoxy due to my report that I still wasn't feeling very well. After one week on the Amoxy my symptoms cleared up. I'm not sure if they cleared up because the herxing stopped or because of the Amoxy or maybe it was a combination of both .

Anyway, I continued on the Amoxy for two months and felt pretty good. I tried stopping the drug but relapsed after 10 days so I immediately got right back on it. I continued to take the natural stuff during this time but it seemed to have no effect one way or another. After another 4 months , the Amoxy just stopped working for me. He switched me back to doxy. The doxy worked pretty well over the next 16 months. I tried discontinuing the drug twice during that period but each time I relapsed- I was able to go 19 days and 7 days during those trial stoppages before I had to get back on the antibiotic.

At this point my first llmd began to suspect that I didn't have lyme anymore and maybe these symptoms were just in my head or something else. He didn't actually cut off antibiotics but would make statements like ``You've had a lot of antibiotics.'' and other hints so I made an appointment with another llmd. This llmd treated me with antibiotics only. He didn't recommend or prescribe any natural stuff except acidophilus - God bless him. He put me on a combo of 400 mg cedax and 250 mg Zithromax once per day after dinner. In addition I continued with the 200 mg doxy per day and a one-week round of Flagyl per month which I still had left over from my first llmd. I continued to feel well on this new combination. In fact I had always responded well to antibiotics and hadn't been sick for more than a few days since I started treatment, except in the beginning. The problem was I was unable to discontinue the darn things.

I did this combination for 4 straight months and for the two months after that I pulsed this combo using the protocol of one-week-on, one-week-off.

On the weeks off I took the following:

1 capsule of Samento (600 mg) - twice a day
2 capsules (750 mg) Immutol (Beta Glucan) - twice a day
1 capsule PYCNOGENOL (75 mg) with 1 ounce of aloe vera juice - twice a day

Of all the herbal stuff I tried , and I tried just about all of them, I found these to be the most effective .

I purchased the Samento from http://www.herbalremedies.com/ ; the Immutol from http://www.immunocorp.com/ ; and the PYCNOGENOL from http://www.vitaminlab.com/ .

The Probiotics I use is called Flora Source which I purchase from: http://www.goldenhealthproducts.com/. It's important to get a good brand IMO because I believe that 75% of the stuff you find at health food stores is dead and worthless. I mix the Flora Source in soy Yogurt and still eat it every day.

Anyway , I haven't relapsed since, knock-on-wood and it's been over a year since I have had any antibiotics. I am completely recovered in every way and even able to enjoy a few glasses of wine without a bad reaction that I used to get during my treatment. I'm not mad at my first llmd and would recommend him highly. He claims that he has an 80% success rate and I have no reason to disbelieve him.

I continued with the herbal protocol for two months . Then for another three months after that , I did two out of three each day (i.e. Samento-Immutol or Samento-Pycnogenol or Immutol - Pycnogenol ) . I no longer take any of these but I have continued with the Flora Source to this day.

Even though I was on antibiotics for almost 2 and a half years, I do not have any yeast problems. I feel my breakfast might have something to do with this which consists of 4 ounces of soy yogurt with one capsule Flora source mixed in. A couple of ounces of aloe vera gel. 1 tablespoon of flax powder. 1 tablespoon of Dr Schulze's Superfood, or 1 tablespoon of brewer's yeast. 2 tablespoons of peanut butter or two tablespoons of tahini butter. Blueberries, papaya, and 1/2 apple. I've pretty much eaten the same breakfast for two years.

Looking back, I should have dropped my first llmd after a year. The rule of thumb is that one should be symptom-free for two months before attempting to quit antibiotics. I had done this several times yet still relapsed. I should have added in the Zithromax-Cedax combo after the second relapse. If you just go back to the same drugs at the same strength, you're just going to relapse again. It's important to be more aggressive IMO. On the other hand, maybe it just takes a long time for some people. Who knows, every case is different.

Jack

 

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Posted by trecetetodromonmetabia (Member # 6250) on :
 
Anyone who has more success stories, please respond to this post.
 

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Posted by treepatrol (Member # 4117) on :
 
Went off abx's on sept 27 2004 we will see. Both wife and I went off. I was on them for 14 months straight this time wife 1 year.

We will SEE
 

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Posted by Melanie Reber (Member # 3707) on :
 
UP for Heartsickmommy...

VERY SPECIAL THANKS to all who have shared their wonderful stories!

Your inspiration is priceless

------------------
C O L O R A D O * S U P P O R T * S Y S T E M
[email protected]
 

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Posted by Lymetoo (Member # 743) on :
 
up for more stories
 

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Posted by caat (Member # 2321) on :
 
I talked to 2 nurses who had lyme.

One was treated fairly soon with doxy & says is cured. I kind of wonder about that one.

The other had lyme for 3 years and nuerological involvement. She did only 28 days rocephin and feels she was cured. I beleive her. She's been sx free for I forget how many years.

Me? Not yet... but talking to that woman gave me hope and made me realise not everyone goes through as much h*ll as us chronic cases.
 

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Posted by cityzen (Member # 5317) on :
 
I needed to read this today. Thank you. We should keep this thread permanently up at the top.
 

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Posted by Clarissa (Member # 4715) on :
 
Hi Fellow Lymies,
It's been a while since I've logged onto this wonderful website. There was a time when I logged onto Lymenet 20 times a day...it was my lifeline.

I would really like to give back to all or any of you that may have questions about the regimen that I felt finally helped me.

I was one of those chronic Lyme cases that was diagnosed SO late (28 years late) that my LLMD put me on IV rocephin for 8 months.

This killed the migraines but it "might" have increased my candida problems. Then, for the next year I was on ceftin, zithromax plaquenil and doryx (not at the same time).

I couldn't stomach biaxin AT ALL and until I got the candida under control through diet and probiotics, I couldn't stomach the zithro.

I think the abx played a huge role in killing the majority of the keets, however, I truly feel that I started turning the corner when I started alternative therapy.

This included joining a program called AIM (which I'm still on...please do a search under my name for "can't hurt&might help" title where I wrote in detail about the program when I began it last year).

The second thing I started using was something called Master's Miracle de-tox products. I took long baths in this ph balancing soap/neutralizer every day. That helped tremendously.

At that point (last October), I was off ALL abx and trying to conquer the horrific candida symptoms. I used diflucan, nystatin, florastore, bifidus but my gut was clearly still in bad shape.

I also struggled with mild headaches, fatigue, tremors and nausea.

My LLMD told me about a product called Primal Defense (made by a company called Garden of Life). I noticed some slow improvement and so invested in some of their other products:

1) fungal defense
2) Perfect Food (green food powder or pills) that equal up to 5-10 servings of the important raw veggies you need to kill the candida
3)living multi-vitamin

On a comical note, I ended up meeting a guy (thru internet dating) and he worked for this company. We were not a match but he brought me a whole box of their products after I told him about my struggles with Lyme and my belief in the products.

Scarily enough, I was more psyched to have all of these free vitamins/supplements than to have a second date!

Anyway, I just want to give hope to the newcomers and people still struggling. There is a light at the end of the tunnel.

I think different protocols work for different people but I want you all to know that I'm living a healthy happy life and it is possible to get this wretched demon out of your bodies!

I'm starting a new job on January 3rd. I exercise 3-5 times a week. I sleep soundly through the night. My obsessive compulsive issues are down to the bare minimum.

The only remaining lingering symptom is an occasional pop in my jaw when I open my mouth really wide. I was fitted for a night guard so, hopefully, that will alleviate that problem.

Do I believe there's some keets still lingering in my body? Absolutely. The difference is, though, they're not having a party. They're sitting in the corner wearing a dunce cap.

If anyone would like to contact me directly with questions, or even just to vent, chat or cry, you can contact me at [email protected].

I want to be strong for all of you the way you were strong for me.

With love & hope,

Susan

 

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Posted by Coyotecrazy (Member # 6707) on :
 
THANK YOU, THANK YOU, THANK YOU for posting these success stories !!!!!

My husband and I were beginning to wonder if anyone ever actually got "well".

I am TRULY GRATEFUL for having found this website and wish you all the best of luck and God's blessings (with God's blessings, who needs luck, but it doesn't hurt either !! lol)
 

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Posted by robi (Member # 5547) on :
 
http://flash.lymenet.org/ubb/Forum3/HTML/011720.html

Thought these belonged here also.....they were encouraging to me.

robi
 

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Posted by willbehealthysoon on :
 
up
 

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Posted by robi (Member # 5547) on :
 
Any new stories?

I feel like I am heading in the right direction but not there yet...........

robi

[This message has been edited by robi (edited 15 February 2005).]
 

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Posted by willbehealthysoon on :
 

My grandparents have 2 friends who had lyme for years(don't know how many) and they are now completely symptom free.(I'll ask about their treatment,syptoms & post back here.)

up for more
 

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Posted by danq (Member # 2126) on :
 
Hey, I didn't register on this topic - but I pretty well remember posting on a 'successes' topic somewhere around here...

Okay, disclaimer: I'm not 100% and never will be now, 'cause I ended up with Parkinson's - for real, not a misdiagnosis. So far it's only got my right hand a bit... so I can't lightning-edit/repost/riposte like I did here in my heyday and Lyme-nadir. But if I only use my left hand, I can type about as fast as many can with both

Now the goodness: it's been a long time since I had abx. Long time since Lyme symptoms. How long? I don't remember, that's how long!

Okay, okay... lemme look it up here... oops - bad Lymie! Poor recordkeeping... musta been brain fog. Well, it sez here that the P diagnosis was in June last year, and that was after all the 'normal' Lyme stuff (for me) was done... so I reckon it's been a year or so.

Heck, I thought it was a year in January! Just goes to show... when they diagnosed Parkinson's, they figured they better check in on my brain - so I got to spend a day with a very nice man doing Cognitive Testing. That was fun! Well he was a little concerned because I tested "superior" (to what?) in all his little boxes except one... but I don't rememb... oh yeah, it was "short-term memory". And after that we went a little bit farther down the trail, and there was another one! Except this one was white, not purple like all the rest.

And that's what I did on my summer vacation. Yes, that's how I got up there.

Butt seriously, folks, I'm well and cognizant and very, very active... and getting more so each week.

Now if y'all wanna hear how I got well, somebody try to find my post wherein I explained that. okay? Test out the search function... I'm all out of time, I have a report to finish tonight for pay. If nobody finds the post and someone wants the data, somebody email me... by then I'll have spare time and will either find it or re-invent it again.

Happiness and wellness to you all, especially re-ticked Tutu and TinTin and the rest of the old gang who knew me when I was just a keyboard spirit.

Dan

[This message has been edited by danq (edited 26 April 2005).]
 

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Posted by Gabrielle (Member # 5329) on :
 
Hey Dan,

Congrats to your good health!!!

I wonder if you have seen this or might be interested:
http://news.bbc.co.uk/2/hi/health/4051951.stm

Take care,

Gabrielle
 

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Posted by Cheryl (Member # 75) on :
 
Bump!

------------------
*Lyme Disease Information By Email
*Lyme Disease Information Website
*Computer Infection Info
 

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Posted by Dayle Ann (Member # 1657) on :
 
I just posted an update in another thread, then realized my story from 2 years ago was in this thread. So here is the latest. It got better.

I had Lyme almost 17 years undiagnosed, along with erlichiosis and bartonella. Were not a pretty sight, as described in previous post. Life pretty well shot, and so was I.

I was so sick that we eased into abx slowly so I wouldn't herx too badly. Gradually worked up to the full combo. Also took a several Chinese herbs, which helped immensely with managing symptoms and herxes.

First round was 16 months. Took time for infection to do its damage and weasel into the recesses of my body; took time for abx to do their job too. I got well enough that I went off abx. Off ten months, then had a minor relapse, aggravated by stess (bought fixer house). I was no where near as bad as before, but enough to know I needed to go back on abx.

Ten more months, a different combo this time, and I was doing so much better I couldn't beleive the difference. I am probably more active than most people my age.

Dr said that it is possible I could relapse again, but that each time I am treated, the time will be shorter, my immune system gets stronger and my functional level gets higher.

It worked: some things improved rapidly, some have taken longer. Abx gave my body chance to begin to heal on its own. I am doing professional level work again part-time(I am a field scientist). I can hike mountain trails for miles and still cook a meal and tend to the house and animals when I get home. I not only read novels and technical articles, I write and it actually makes sense. I go out with friends or family. I go to a conference once in a while, and the occasional concert.

I still have some things I have to deal with: a little tinnitus, and hyperacusis is still an issue, but it is nowhere as bad as it was, and is still improving. Klonopin and earplugs helps with what is left. I am careful not to get overtired, but hey, that is just good common sense for anybody, especially my age (62).

When I was finally diagnosed, I determined I'd do whatever it took to get well. Won't call myself cured, but I do consider myself "well". It was worth the effort, every pill, every herx, the effort of physical therapy to regain strength and function.

Got a great photo of me standing at the top of a mountain in hiking boots and a hard hat. Never thought that would happen again. Next is the kayak...

Dayle Ann

 

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Posted by daystar1952 (Member # 3255) on :
 
Lyme Disease : A Death And Resurrection
Marjorie Tietjen
[email protected]

My life had never been particularly difficult. In fact I often felt guilty that others appeared to be struggling so ,while for the most part, I seemed to sail smoothly along. Of course I had my little ups and downs but never really experienced the tragic in life.

About 17 years ago, as I was driving to work one day, I vividly remember a conversation I had with God. Dear God , I said, I am truely grateful for all the good in my life but I feel as if I am spiritually stagnant, not growing, learning and helping others the way I feel I should be. So...if I need an experience to help me evolve and grow, please....just don't make it too difficult to bear. Looking back, I can't believe I was saying this! Little did I know what I was about to experience.

As the year progressed, I gradually began to acquire odd unexplainable symptoms, such as tingling and numbness in various parts of my body, lower back pain, headaches, stiff and painful finger joints and fluctuating anxiety. I remember visiting our general practioner for tingling and numbness in my arms and hands. Without testing of any sort I was handed valium. Of course, the valium did not help.

During this time I was working in the cafeteria where my small children attended school. This worked out well as I had the same schedule as my children. When school let out for the summer that year, we looked forward to our traditional activities....camping and boating. I will never forget the camping trip where my life was changed forever. One morning I woke up in our camper and felt extremely ill. It seemed as if I had the flu but the symptoms were in some ways atypical. I was very weakened and sick but yet I could not sleep. What was the most unbearable to me however, was the free floating anxiety or panic....for no discernable reason. I would find myself pacing the floor, desperately trying to get away from it. I remember saying to myself that I would not wish this experience on anyone...not even my worst enemy.

In the weeks and months to follow, I would plead with my dear family , who was so supportive and understanding ( even though they couldn't really understand ), to just put me away in a mental institution because I felt as if I was losing my mind and I did not want to be a burden. I made an appointment with our family doctor and was given three weeks of antibiotics...just to be sure.....in case I had Lyme Disease. This was around 1989. They did not test me for Lyme at this point. I was told that it would be too early to show accurate results. It was assumed that if I did have lyme that it must be from a recent bite. However, I feel the illness had been simmering in my body for quite some time. The treatment did not seem to touch my symptoms at all and in fact, I felt worse. The panic/anxiety became so intense that I was prescribed tranquilizers.

For several months, when I was at my lowest point, I was unable to care for myself or my children so we temporarily moved in with my husband's parents while my husband stayed at our home to continue working. Then the doctor decided that depression must be my problem so he prescribed antidepressants. He informed me that if needed, I could take up to three at a time. That night I did end up taking three pills because they didn't seem to be working and in fact ended up making the situation worse. I woke up in the early morning in a state of fear and with the thought that I needed help. As I went to the top of the stairs to call for assistance, I fainted and fell down the stairs. My seven year old son called the ambulance which took me to the hospital. At the hospital the doctors performed several tests, including a CAT SCAN of the head. When the doctor found nothing obviously wrong with me, I was asked what I liked to do in my spare time. I told him I enjoyed boating with my husband. His only suggestion, before he sent me home, was to take more rides on the boat with my husband and that this would most likely make me feel better.

When summer came to a close, it was time to return to work at the school. I was barely able to function but wanted to press on for fear that if I gave up and quit that my life would be over. At least this way, I thought I could keep up some sort of normalcy. My coworkers were not very understanding.....to say the least. At times I was so lightheaded and weak that I would immediately have to lie down on the cement floor in the stockroom to get the blood flow back to my head. With me, it wasn't a matter of sleepiness but a simple inability to stay upright for very long. The women I worked with would say to me...."well , we get tired too sometimes you know, but we don't have to lie down!"

Time went by ,as I struggled every day to function, and I was diagnosed with Chronic Fatigue Syndrome. Even though there was no cure, it felt good to have some diagnoses besides depression. I knew something was seriously wrong with me and that it wasn't just "all in my head". Actually, most of it was in my head, but in an organic way...not psychologically. Every couple of weeks a strange new neurological symptom would add itself to the others already in my repertoire.

One of the most difficult parts was that most people just did not understand. How can anyone be so sick for so long while the doctors can't find any concrete cause? I can't blame them really. One has to have had this disease to appreciate the full implications of it's diabolical fluctuating nature. Because I didn't want people to feel that I was lazy or mentally ill, I set out to prove that I was really and truely organically sick. This drive led me to begin researching the vague diagnosis of Chronic Fatigue Syndrome (CFS). I would bring all my research to my doctors, hoping desperately that they would take an interest. My family doctor was very supportive but all the specialists I was sent to told me to accept my diagnosis, that I was depressed and why was I doing all this researching? The doctors would tell me that diabetics for instance...they accept their disease and get on with their life so why couldn't I do the same. My neurologist told me that I should stop all the researching because I wouldn't want her to get the wrong idea and that other doctors would also get the wrong idea about me. She was insinuating that I was crazy. I went home that day in tears. No one who is sick should have to be treated this way. Many patients with vague diagnoses , such as CFS and Fibromyalgia, often express the idea that they almost wished they had cancer so they would be taken seriously. Some have even expressed the thought that at least with cancer , many die and get it over with.

After 8 years of having "Chronic Fatigue Syndrome", my research led me to Lyme Disease. I noticed the symptoms of CFS and Lyme were extremely similar and decided I wanted to check this out. I made an appointment with a lyme literate doctor and began my still ongoing recovery. I was tested for Lyme Disease by this doctor but the results were negative. However, I was treated anyway based on my history, symptoms and the fact that I lived in a very endemic area. At first my symptoms became worse, as I was warned. I was told that this was a good sign and meant that the antibiotics were hitting the target. I was on a high dose of oral doxycycline and it took four months before I even began to see any improvement and then finally, little by little, some of my symptoms began to fade away. It was a very slow process with many setbacks and flares....but each month these cycles of flares would be reduced in severity. I learned that the setbacks and cycles were almost always temporary. I would often tell myself not to worry when an old scary symptom would reappear. Usually in three to four days the particular symptom would disappear and another one would take it's place. Again, in my experience, each month the symptom cycles were less and less severe.

After 4 months of antibiotic treatment, I was retested and was now positive. The explanation I was given for this, which makes sense to me.....is that those who are the sickest, most likely have the heaviest load of the lyme bacteria. Many times all of one's antibodies are tied up to these bacteria in immune complexes. When the bacteria begins to be killed off, this frees up some of the antibodies which can now be measured. So...in other words....it is often those who are the sickest and chronically ill who test negative for Lyme Disease when using antibody testing.

Two years ago I had to switch to another doctor who specialized in Lyme Disease. I was begining to slip backwards because of breaks in treatment. I had never really been on consistent long term treatment. This new doctor had me tested with the Bowen test and I tested positive for Lyme and Babesia. Now that I am finally being treated consistently for the lyme and the first time for Babesia, I feel as though I have my life back.

During those many years in limbo, I felt as if I had lost my connection to God. Lyme Disease had pretty severely affected by brain and nervous system which made it difficult even to think....never mind to experience spiritual feelings. I couldn't understand why I would have to go through a trial or experience which would make it so difficult to feel God's presence.

As my thinking became clearer with treatment, my feelings of spirituality gradually began to reappear. I spent more and more time reading inspirational books. I wasn't trying to be healed nor was I asking or seeking anything else material or specific. I just wanted to feel and be aware of the presence of Spirit or God. I wanted the joy and love and goodness I was recieving from God to flow through me and envelope those around me. As I focused in this way, I felt as if I have emerged from an egg into a new world of excitement, happiness, joy and love. So many wondeful people have crossed paths with me and for this I will be eternally grateful.

Intuition seems to have increased, synchronicity abounds and everyone I come into contact with is trying to serve humanity in their own special way. I have improved a great deal and seem to have aquired new abilities that I had never even dreamed of. It's like watching a play unfold....a good play. I now feel as if I have a purpose in life. The thought of growing older and losing vitality now never crosses my mind. I am finding just the opposite to be true. Not that I will now be free of all problems nor am I totally cured but this illness has brought me to a point where I appreciate life and those around me...so much more. While I personally don't believe that God sends evil or trials to us, I think our experiences reflect the degree to which we try to abide in Spirit. We all have a desire to know God and to feel God's love so perhaps when we are focused on the wrong things something inside us creates circumstances to head us in the right direction. So, despite the fact that I still have memory and organizational problems and the world seems to be falling apart around us, I am experiencing a more consistent joy and assurance that in reality God is on the scene but that our real need is to open our awareness to this fact.

Lyme can be a devastating disease but there is always hope....especially when we look for it in the right places. I am sensing...along with a growing number of others, that despite what the media is telling us....more and more people are coming together in the spirit of love and cooperation. This spirit of love is the only thing that will truely heal our lives and the world. While, as many of you know, I feel we need to expose the corruption which is seemingly taking place all around us.... it musn't be with a sense of hate, fear or revenge.

I can actually say, even though the lyme journey has been a very difficult struggle, that if I could, I wouldn't want to change a thing. I feel that the Lyme experience has brought me to a whole new place....one of wonder and amazement.

 

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Posted by aiden424 (Member # 7633) on :
 
Melanie,
Thank you, what a great idea!! It's so comforting to know that people can, and do get better. I was worried that after 19 years of being misdiagnosed with CFS instead of Lyme that maybe there was no hope for recovery for me. After reading these posts it gives me hope!!

Thank you!!

Kathy
 

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Posted by treepatrol (Member # 4117) on :
 
^
!
 

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Posted by Biting Back (Member # 6018) on :
 
Went to see Dr. C on Monday and he deemed Chanse 'cured' of lyme disease! Woo-hoo! He also told Chanse that he made his day!

Mind you, this is a little boy who was diagnosed with autism, a hopeless 'genetic' disease almost 5 years ago. He's a perfectly normal little boy and you'd never know today he was ever sick, let alone autistic.

What a blessing. My heart is bursting with gratitude for all of you here on lymenet. Thank you so much for your support over this past year.

I'll still be around . . . for a while, anyway.

One Year Ago
Here is my initial post on lymenet about our son, immediately following his lyme disease diagnosis. Very much worth reading, especially if you have sick little ones!

Blessings of health to all!
 

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Posted by treepatrol (Member # 4117) on :
 
Heres another
http://flash.lymenet.org/ubb/Forum1/HTML/037035.html

Author Topic: Good News! I see the end of the tunnel and it's bright!
Aniek
Frequent Contributor
Posts: 1253
From: Washington, DC
Registered: Mar 2004
posted 22 August 2005 16:10
--------------------------------------------------------------------------------
I thought I would share the very, very good news that I appear to have beaten this thing! My symptoms are greatly reduced, I feel healthy, have energy, and just gosh darnit feel good!
Many of you may think of me as a walking advertisement for the muscle relaxer Flexeril. I've been on 30mg a day for about 18 months. Like a bad patient, I noticed my prescription would run out before my next visit. So I decided to take a test and I started to wean myself off the Flexeril.

I'm now down to 10mg and I don't have any increased pain or stiffness. In the past, I've noticed increased pain within 48 hours of going down to 20mg.

The infections I have battled are Lyme, Babesia and Salmonella. Interestingly, the salmonella appeared gone only to reemerge after treating the babs. Salmonella can cause a reactive arthritis.

I've moved through a number of protocols including:
Penicillin
Amoxycillin, Biaxin and Plaquenil
Augmentin, Biaxin and Plaquenil
Augmentin, Levaquin and Plaquenil
Ketek, Artemisinin and Plaquenil
Ketek, Amoxycillin and Plaquenil

Also had Diflucan, Synthroid, Acyclovir (Anti-Viral), Flexeril and most of the treatment. Added Prevacid a few months ago for heartburn.

[This message has been edited by treepatrol (edited 23 August 2005).]
 

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Posted by treepatrol (Member # 4117) on :
 
Author Topic: Dropping in to say hello! Feeling good!
cafe67
Frequent Contributor
Member # 7207

Rate Member posted 23 September, 2005 10:23 AM
--------------------------------------------------------------------------------
I know this is supposed to be in general - but I know more people will read this here and I wanted to give a little back to this wonderful support group.

It's been a while since I have posted.

1. because I have been doing great. I would say 99.9% better somedays 110%. For about 4 months now.

2. I didn't want to jinx myself - It's so silly (it's not like you guys are catching) But it is such an emotional/physical drain. Then when you feel better you just want to move on, live life.

Although I have been monitoring from afar.

Anyway, I wish everyone well and anyone can contact me always for info or questions or drs. info. I'll be watching!

Just wanted to say thanks to Lymenet members who were so supportive and caring in a very scary time in my life. I think finding lymenet saved my life. I found out my symptoms a lot earlier than most (9 months) and got treated by a wonderful wonderful doc.

There is hope!!!!!!!!!! Wew! That felt good!
--------------------------------------------------------------------------------
Posts: 118 | From: MIlwaukee, WI USA | Registered: Apr 2005 | IP: Logged |


From cafe67
 

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Posted by lymebrat (Member # 3208) on :
 
To the top for Crime, was this the one you were looking for?


.

[ 01. November 2005, 01:09 PM: Message edited by: lymebrat ]
 

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Posted by treepatrol (Member # 4117) on :
 
TheCrimeOfLyme
Frequent Contributor
Member # 4019

posted 31 October, 2005 10:43 AM
--------------------------------------------------------------------------------
I have a confession- I searched, found and tried to post on Melanie Reber's success stories, but every damn I clicked on it to DO that, I was taken straight back to the main frame of lymenet ( which was extremely annoying)

SO , its either "NOT OVER" or they closed that post.

But anyways, it's over. The last time I had posted a success story, I was about 80 percent better. Today? 100 on *most* days.

I got sick in May of 2002. I skipped everything and headed straight for the devastation land of brain warped lyme and severe neurological problems.

I had ( not a complete list) a severe migraine that lasted five months straight, accompanied by day in and day OUT vertigo, Spurting nose bleeds ( there was NO trinkle to these suckers)

extreme neck, jaw, face, forehead and eye pain. Severe shoulder pain, temporary come and go paralysis, neuropathy, sleep apnea, brain fog, what I still call "brain drunk", severe fatigue, muscle tremors and twitches and just a complete "duh" to my head. I felt like I drank a six pack and was on vicodin- except it wasn't

giggly and funny. It was PURE torture.

I went undiagnosed for 9 months. Uh, ok so I had PLENTY of diagnosises- everywhere from a tumor ( and a rare one at that) , to inner ear problems, female problems, anxiety, stress, and of course that "gee you have too many kids" syndrome.

I did in order:
Amoxy 4000 mg per day for six months
Clindamycin and quinine rotated WITH amoxicillin after amoxy alone, for six MORE months
Rifampin 600 mg a day for 3 months
Doxy 300 mg a day for three months
Ceftin 2 weeks
Biaxin and Mepron 3 months
and am now on Bicillin.

I ran into problems with my treatment. SEVERE problems. I began to not be able to take any antibiotic at all , and then that extended into food, and even WATER, without a reaction 30 minutes later which would include severe brain drunk,

neck pain, fatigue, neck and shoulder pain and often times, severe migraines. The problem with THAT was that I was always a good strong herxer on the amoxicillin. I took it, I herxed and felt like death, then I progressed.

After the amoxicillin ( which was my first drug) and other things were mixed in, I was "herxing" ALL the time. I lost so much ground and developed so many MORE symptoms it was pathetic. The worst? I developed orthostatic hypotension

and was no longer having ANY good days. But I kept chugging along and kept taking my meds. Once , as I said, the problem extended into food and water and I felt the same effect from THAT as I did my antibiotics- I knew I had a severe yeast issue going on.

I was diagnosed with leaky gut syndrome and severe yeast issues last November I believe. I was at the point that if I kept antibiotics out of me, I could feel good, but if I put them IN me- I was DONE in a half an hour.

I went through many LLMD's who said that it was a herx. I knew better. I finally found my current LLMD who picked up on the yeast issues and leaky gut and did some testing. I stopped antibiotics cold turkey in November of last year and worked on detoxing and yeast treatment.

Slowly, but surely, that all too familiar neck, shoulder, jaw and face pain along with severe head pressure started to leave. Amazingly, so did the orothostatic hypotension. I started driving again, albiet slowly, and I started walking again.

Today, I can drive anywhere. I went back to college AGAIN ( I had tried this last August and had to quit ... I didn't realize the diflucan I was taking back then is what was making me feel so darn good, but once I stopped that and continued taking my antibiotics- I had to quit college again)

Im four classes away from graduating, thank goodness. It took me four years to do an 18 month program, but hey, I did it!

I still can't walk VERY long without having my orthostatic hypotension kick in. I STILL flare around my woman cycle ( not nearly as bad AT all) but I don't really have a herx cycle.

Due to my gut issues, I was put on Bicillin once a week as a test by my LLMD. If I took a shot, stuck it in my rear end and 30 minutes later had the SAME reaction as I did on orals, then tough.. thats just how I herxed. So , we tried it...

and no reaction. Not only that? But I didn't herx... I felt GREAT. As the weeks went on, still NO MORE herx. In all honesty, I herxed only once pretty darn good in the 10 weeks I have been on bicillin.

I take diflucan daily. 100 mg and switch it off with nystatin. I lost 15 lbs since going off of antibiotics. I am NOT fatigued at ALL anymore. Once in a blue moon, I still do have to "Crash" for a few hours.

I had strep throat last month with no exabberation of my symptoms. Shortly therafter, I got the flu and was vomitting for two days. no exabberation again.

I can sleep again. My sleep apnea is pretty much gone. I don't get headaches, etc. And, I can eat! Breads, pastas, etc still set me off bad ( within 30 minutes I get all KINDS of pain) so I avoid them like the plague.

I met a WONDERFUL guy last February and he has really been my rock. He helps me every step of the way and truly understands this. he lost his dad to a disease when he was 3 ( that we now know CAN be lyme, but I will regard his privacy ) so he truly does "get me".

He moved in and things are going well. I left an emotionally and mentally and verbally abusive relationship in the midst of all this and realized that I may have "gotten out of bed a long time before I realized I was out of bed" kind of thing.

It feels good to be back and take my life back. I plan to continue with the yeast treatment as honestly, the yeast was really what was nailing me, and continue to do as much alternative with that as I can. My new bf does the yeast treatment with me and we kinda fuel off of each other.

My daughter is still very sick and continues to be ping ponged between lyme and yeast treatment ( as well as bartonella treatment) but she is in good hands as well.

I'll peak in from time to time. I hope each and every one of you can get well. IT IS POSSIBLE. Four years ago, at the age of 26, I was drafting my living will. Now? Im just living and this time? I have SO much to live for.

Jodie

--------------------
You want your life back? Take it.
TheCrimeOfLyme shhhhhhh
 

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Posted by Lenny777 (Member # 5452) on :
 
Well kiddos, I haven't been on in a long time. I like to check back and see how everyone is doing. I've been off meds for...a year +. I don't remember exactly and I guess that's a good sign. No magic pill or anything...I was sick about 9 months I think before I got treatment. I was on $Bicillin$ for 3 months and Amox for 3 or so. I feel real good. I'm playing golf and lifting weights 4 days a week. I was taking a martial arts class but I pulled my back big time, so I think I'll pass on that for now. Oh, I'm getting married next year.
Occasionally I feel chilled or a joint hurts and I get all panicked, but that's just normal pains of living and being 34. .
Let me remind you to be open minded with treatments and diagnosis. You guys are in my prayers.
A life is an amazing thing and worth fighting for.
 

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Posted by Melanie Reber (Member # 3707) on :
 
It sure does my heart good to read all of these great stories of success...

and to see that they are working to comfort those who are currently struggling with their own story!

Thank you so much to all who have shared.
Keep it up!

Melanie
 

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Posted by treepatrol (Member # 4117) on :
 
up
 

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Posted by lymeinhell (Member # 4622) on :
 
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=038928

Still going strong!!
 

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Posted by Andie333 (Member # 7370) on :
 
Julie...



 

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Posted by treepatrol (Member # 4117) on :
 
matthewgoss
Frequent Contributor
Member # 3167

posted 12 January, 2006 05:31 AM
--------------------------------------------------------------------------------
Its been almost 3 years now since I've had any symptoms. I haven't kept up much with the discussion forum here the last couple years, but I am committed to popping in here once in awhile to let you all know this thing can be beaten.

I was pretty depressed during the time I had Lyme, because I couldn't find anybody who had gotten rid of it for more than a couple of months. Everybody said the symptoms all came back after they were off meds for a few weeks.

I thought my life was over, and suddenly my whole world revolved around Lyme. But I was determined that I wouldn't go down without a fight, and channeled my energy into finding a solution...there are lots here who helped me do that, and I owe you all a debt of gratitude for the life I got back. I spent every spare moment on the net (mostly here and medline) reading as much as I could, and spent a good deal of my own money on meds...we all know the insurance deal, and I had some damn good insurance (was working at the phone co at the time)...I don't have health insurance now...the whole experience soured me on the concept...

I got really aggressive with the meds within the first year I had it, and I think that is the key...covering all of your bases. It saddens me to see so many familiar names on here still...I still think about you guys from time to time. I'm not blaming you for not getting well (I'm sure your friends and family give you enough grief in that department...I know the ones who didn't give me grief just plain disappeared...most of them disappeared...you really learn who your friends are)...seems to me the biggest thing I've learned from you all is that this disease is hard to beat in general, and it gets harder as more time goes by. I've talked to hundreds of people that have Lyme, maybe even thousands, and the handful I've met who were able to stop meds permanently took handfuls of pills for months at a time within the first year after they got Lyme, though for many this didn't work either. I'm trying to be upbeat about it, but I think the most important message I can send out to the 'new' people here is that you don't have time to fool around, if you don't nip it in the bud, then well, you just might be here awhile.

Last June I moved from Florida to Missouri, and OMG do we have ticks here! I spent the whole summer camping down by the river (I've spent almost a year of my life so far living in a tent), and I pulled dozens of ticks off me every day last summer...it worries me because there is a different strain here than in Virginia where I got Lyme...but I've got an emergency supply of abx on standby But I won't stay out of the woods and live in fear...in fact, I just bought 7 acres of woods a stone's throw from the national forest...I plan on spending the summer building a log cabin out there, and when I move out there permanently getting some guineas and chickens for tick control

If anybody is coming to Missouri to visit a certain doc I know, look me up! I'm halfway between Springfield and St Louis, and I might just put you up for the nite (spend your $ on meds, not hotels)...though the accomodations will be very simple (everything I own aside from some simple furniture fits in 4 boxes and 3 suitcases).

Matt

From:

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=3;t=014328
 

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Posted by hardynaka (Member # 8099) on :
 
Free from night sweats since Christmas!!

After 4 months suffering from low body temperature and occasional sweats at night, I'm free of low body temperature and night sweats since Christmas. Hope it will continue like that.

What worked was Riamet. I was not sure I had babesia and I'm not receiving any antibiotic treatment since I discovered I had lyme. Low body temperature was very annoying, I never had high body temperature since lyme onset (June 2005), and had only occasional chest pain...

Someone from this forum suggested me I had babesiosis. I insisted to receive Riamet from my general practioneer short before Christmas, he prescribed it to me, and after 3 days of taking it, 4 months of suffering with cold and chills were gone like magic.

So I had probably babesiosis. Now my fight is with lyme (light arthritic pain), but I feel another person after having gained a normal body temperature in these cold winter days!

Riamet then: highly recommended, even if you just suspect you have babesiosis!!

Selma
 

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Posted by Andie333 (Member # 7370) on :
 
Hardynaka,

That's really great news you posted; I'm so glad to hear it!

I've battled cold hands and feet but seem to be getting some relief from acupuncture and Chinese herbs.

Treepatrol,
thanks for finding and posting the success threads you do. Reading here can really give me hope!



Andie
 

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Posted by treepatrol (Member # 4117) on :
 
up for newbies and just support
 

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Posted by treepatrol (Member # 4117) on :
 
AlisonP Posted this about a friend

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=041221


posted 10 February, 2006 02:28 PM
--------------------------------------------------------------------------------
Although this is not *my* success story, I thought I would pass this along because it is one of the most encouraging things I've heard since I got sick.

A woman I used to work with in San Francisco has Lyme. I was able to sit down and interview her last week and learn what worked for her.

She has had Lyme for, she suspects, a long time. I asked her how on earth she discovered it, and she said that she had been seeing a homeopath for a couple of years for unremitting hip pain and other things and when she wasn't responding to treatment, the homeopath said to her, "You have Lyme, and the reason I know is because *I* have Lyme".

At first she didn't believe it, but then she got tested and sure enough. I should also mention that although her symptoms were fairly severe, she was still able to keep her job but she did miss a lot of days.

As of today, she is completely and totally symptom-free. She is able to drink a glass of wine if she wants, and is actually in Hawaii right now with her family, diving, swimming, and surfing. She says she is 100 percent, 100 PERCENT (!!!) better. She just stopped abx 2 months ago after having been on them for over 2 years. She was also getting abx shots 2x week.

She said that she still has to watch what she eats, though, and of course be vigilant, but yes, she is even healthier than she was befor she got sick, she says.

The main thing she said that was so important was eating an anti-inflammatory diet. She prefers the Zone (what has been working amazingly for me is doing a Leptin-balancing program and incorporating tons of anti-inflammatory vegetbales and fruits. Yes, i said fruits lol. More on that when I am done with my Cymbalta withdrawal hell. Anyway, back to the topic....)

She said that the quickest way to slow healing progress is to eat anything unhealthy, inflammation-causing, etc. Diet is key, and not just anti-candida.

Fasting: She also said that what really "kick-started" her healing was doing a medical fast. This was encouraging to me because I had some success with Lyme and fasting in the past but I felt like none of the fasts I tried were quite right. She has given me some info on the one she did and I am going to contact them and find out more and will pass along info.

FIR (Far Infrared saunas) - She said this was hugely important and effective, so much so that she bought a unit and her husband and she use it regularly. She said this really did help speed up detox and healing.

Bodywork: She recommends bodywork that focuses on chronic disease and removing the mucous/gunky deposits in the muscles and connective tissue that Lyme causes. I am guessing this is sort of a lymphatic drainage combined with direct muscle detox stimulation. She said she was doing this once a week and it was invaluable to her. I am going to see her person and will find out more.

She also spoke very highly of Dr. Zhangs herbs, which I was tangentially aware of through this site and other posts. She said these are pretty much the only ones she uses and they are great. I will list her suplements below.

Supplements

Daily Amnt Brand
3 B Complete (b complex and antioxidant) Montiff
4 B12 2000 mg 1
5 Biotin 5000mg 2 Allergy Research6 CoEnzyme Q10 100mg 2 Vital Nutrients
7 DHEA 15mg 1
8 DHEA 25mg 1
9 Esterol (vit C/calcium) 657mg/75mg 3 Allergy Research
10 Formula 14 Enzyme Supplement 1 every other day
11 Glucosamine/Chondroitin 1.5/1.2g 3 Whole Foods
12 Lipoic Acid/Taurine 300mg/500 mg 1 Designs for Health
13 Liver, Organic Glandular 500mg 1 Allergy Research
14 Minerals Plus 1 TBS Bio Max
15 Natren's Trio (Probiotic) 1 Whole Foods
16 Sam-e Extra Strength 400mg 2 Whole Foods
17 St John's Wort 540 mg 1
18 Tocotrienols (Vit E) 100 iu 1 Allergy Research
19 Ultimate Omegas (Vit E) 1400 iu 3 Nordic/Whole Foods
20 Vitamins (liquid) 1 TBS Bio Max

She also said that rife was too invasive and negatively stimulating to the system for Lyme (her opinion) and often did more harm than good. She also said that Samento didn't do much for her, in fact most all other herbs I mentioned she said just didn't do the trick.

I will post more info as I get it. Hope this might help some.

Cheers to everyone,

Alison
 

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Posted by batics (Member # 7267) on :
 
I was diagnosed 10 years ago with MS and then a year ago a new doctor felt I had been misdiagnosed and tested me for lyme. Test came back positive. Have treated symptoms with natural means and rife machine. I feel great but losing more mobility in legs and also balance (gait) problems worsening. Has anyone experienced similar symptoms and if so what has helped to improve your symptoms? I had my first symptom when I was 17 (optic neuritis) and did not have any other symptoms until I was 46 which consisted of gait problem and leg stiffness occasionally. Has anyone taking antibiotics seen improvements in similar symptoms? I believe I received lyme through utero. Would appreciate hearing from anyone who has similar situation.
 

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Posted by Melanie Reber (Member # 3707) on :
 
Hi Batics,

Welcome to LymeNet!

I was afraid that your question might get lost in this success stories thread...so I began another post for you here:

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=042919


My best,
Melanie
 

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Posted by Wink9 (Member # 4516) on :
 
Copying this from my other thread to be part of the "success!"

Thought I would come back and see if there was anything I could help with. My mother just started her treatment last week after constant nagging by me to stop accepting this as old age!

I had debilitating Neuro Lyme and Babs. Had it probably 5 years before diagnosis. Took 2.5 years of solid antibiotics. Had to quit my job, leave law school, withdraw from society, and really re-define life.

I couldn't walk and I couldn't make out sentences during the first few months of herxes, but I could stay on a horse, which was a miracle. I was so Type A, to not have had this outlet, even just sitting there walking around like a snail, would have destroyed me. I also had a horse survive Lyme who I looked to for inspiration, as well as the best family and friends ever. OK, who am I kidding, not many people understood, but the ones that stood by me mean everything to me now.

During Flagyl I was a suicidal maniac. I would scream, cry, wrench, hallucinate . . . I had to be supervised by hubby or Mom. Lexapro helped some. It was like demons were scratching through my pores. All I can do is shake my head to think of it now.

Saving grace came when I finally pushed for an IV of Rocephin. Took it for two months after 2 years of pills. I am firmly convinced if I hadn't waited that long, the strength of the IV meds would have killed me. I had to wait that long unfortunately to kill off enough bugs as to not overload me.

I am now 80% healthy after coming out of treatment last August. There are still days where I really lag. I think of it like people with Epstein Barr. It is a hinderance, but I have my life back. I can work all day long now, have intelligent conversations, handle driving, movement, most sounds, light. My muscles hurt now like a 50 year old instead of a 90 year old! (I am 30) It is all manageable. Life is worth living again. I have joy and the ability to appreciate it.

I always told my family if it wasn't for them, I would never have fought through the disease like I did, not just for me. But now that I am well, I sure am glad I did fight, for ME.
 

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Posted by groovy2 (Member # 6304) on :
 
Hi All

I had a GREAT day yesterday

I live in Austin TX ---
Every year Austin has a
Really Cool Party called
Eeyores Birthday-its been happenening
for 43 yrs--

Ive been to 21 of the parties but
yesterday was the First Time I felt Good-

Its gotten Real Big threw the years-
about 40 to 50 thousand folks meet
at a huge park that is in centrial
Austin---

The weather was Perfect--
I got there at 2- goes till dark--

The music was great and there was
at least 10 Huge drum circles--
and they were in the groove --
I bet there was over a 1000 drums
there today- Austinites are into drums--

The park that its held in
is about 1 and a half miles
square miles - has hills
and many big trees-grass--shade -

I bet I walked over 12 miles --
Ran into 5 different people I havent
seen in years --

You can bring- ANYTHING -you want-
so all kinds of Fun stuff shows up--
Everything is FREE --

Theres a Egg Toss-- the line of contestants
is over 100 yards long elbow to elbow- 5 rounds --
-let me tell you
there is a Lot of scrambled eggs
out there now -- 1000s for sure --
Great Fun -

The same guys have won severals years-
They must pratice --LOL --

The Sack race is Cool --
and lots of fun--50 yards -
folks can go perty fast with
there feet in a bag --

There is a paint tables for the kids-
Many--May Poles -- Jugglers --
mud pond -body painting --
everybody gets painted-
not just the kids --

Theres A Costume contest --
big puzzles made from wood-
swings- jump ropes -ect
Tons of stuff to do-

Lots of folks ride bicycle --
Saw a really nice chopper bike-
Lots of folks ride the bus or
walk--Zero car parking -
--not even one --

About half of the folks wear costumes--
all hand made -- I Laffed Hard all day--
folks come up with some Really Funny stuff--

The Eeyores has a Really Cool Groove--
Reallly Layyyed Backkkk -- No Cops at all--
Not nessisary --

Being a single guy -I got to meet
many pretty girls --was great --

For the last 8 yrs I have been
video taping the party --

I have made some perty good shows
from my footage-- Won a award last
year and my film shows at the new
city hall on the plasms screens daily -

Let me tell you that holding a video
camera for 8 hours is perty hard work-

its not that the camera is heavy-
its you have to hold it Very Still --
Poops me out-- I shot 4 hrs of tape--

I talked to a couple of hundred folks --
and made some new friends --

I had a Great Time ---

You can see more by googling
--EEyores Birthday Austin---

Now let me tell you about myself--
I got Lyme and Babs here in Austin
20 yrs ago -- 2 yrs after I moved here-
--I got Real Sick Quickly--

Threw the yrs I have been to over
a dozen doctors--
None of them had a Clue --

Im a detail kind of guy --
so I took a Complete Symptoms List
to every duck that I went to --

I Now know that it was a Complete
Lyme Symptoms List -DX -

They should have known --
something was very wrong
with me but most looked
and talked
at me like I was crazy --

I wish I could get All of them
a locked room- Now --
They would have a
-- Whole New Out Look on Life --

So I went down hill and suffered
extream body pain - exhaustion--
I looked Terrable --Felt offel--
Felt like I got Beat Up Every night -

When I did get some sleep
I wished I would not wake up -

After a few yrs I could only work
part time and then I had to quit
my job-I just could not do it --

I havent slept in 20yrs-
Had drenching night sweats--
Candida out the cazoo --

On a scale of 1 to 10 I hovered
around a 8 or 9 most of the time --
I was sick as Hello --

Thousands of time I thought about
doin myself in -- a bunch of times
I would have done it but I was
to sick to get out of bed --

About 3 yrs ago I figured out
that I have Lyme by seeing a TV show
about a Broadway dancer who got
very sick-- Quickly --

Her symptoms matched me Exactily
Big Lyme Bullseye and All---
She had Lyme --

So I started researching lyme--
In a week or two I found LN --
SAVED MY LIFE --For Sure --

I took the info I gathered the up
and went to My Doctor--
I convenced him I had Lyme --

He is a Really Cool man --
one of the Nicest people I have
ever met --
He is simi retired and is a Great
doctor but he knows little about Lyme--
Its not around here --Ya know --

He put me on Doxi 200mg a day--
It help and I did get alittle better-
I upped the doxi to 600mg aday
and I got --More Better --

I was still Very sick tho --
Looked like a Loosing battle to me --

A year ago--January 6- I made my
self a promise that if in one year
I was not
any better that I would end all
of my suffering--
I just could not go threw this anymore --

I dont think there has been 5 minutes
total in the last 20 yrs
that I was not wrenching pain--

To go to Eeyores I would have to
rest a good week before and after--
Was really hard to do--

Well about a year and a half ago I found
a LLMD here in Austin --
Very Lucky--

Took 5 months for my first visit-
She is Very Buzzy --

She did tests (Igenx) and they
came back--IND--

She said that I have Lyme and
have Babs written all over me --

Put me on Mepron and Biaxian--

I felt Better in 3 days --

Its taken about 9 months
of Good Treatment to get
feelin Perty Good -
Most of the time --

Its been a Perty Ruff trip--
When I herx I get Killer Migrains-
the last big one was 19 solid
day of head squeezing pain --
I got about 5 minutes sleep -Ouch -

(Read my Head Clamp post--
its perty funny--)

I deffently got Sicker before
I got Better --

Now Im doin Perty Good
Most of the time --

My LLMD tells me I am
one of her prize patients -

Wants me to be in a movie they
are making about what it takes
to Get Better from Lyme--


Let me tell you a couple of things
I learned threw this Tuff Jorney --

You Have to Take Control
of Your Situation --
Nobody else can do it for you--

You HAVE to edgucate Your self--
Knowlage = Getting well again --

If you did only 1 week reasearch-
on Lyme the Odds are
that you will know more than
95% of doctors out there
about these dieases --

You are probelly going to have
to teach your doctor about Lyme ect-
I had to -

Do what You Have to do to get help --
If your doctor is a duck --
Move On---dont waste time --

You Will Know when you find -
--The doctor that will help you --
I Did -

Check for Co Infections --For Sure--
Most folks have them --
This is Very Very Important -

DONT Relie on Test Results--
ALL of the current tests
are Very Poor--at best--

I give them ZERO weight in my dissisions --

All the tests that doctors gave me threw
the yrs Always came back Clean --

All the ducks said to me- You Look Fine -

This I becaused they relied on the test
results 100% --So I got screwed--

Dont be Scaired of ABX- No Reason --

Take your meds on time-Important--
Dont miss any--makes a Big differance-

You have to Eat Good-to be Good-
No carb diet is Best -
Carbs are not worth the pain
and problems they Will cause --

There is not many things that
you are going to have complete control over-
But what you- Put In Your Mouth--
You have Complete control over--

Drink Tons of water and tea--
In the time its taken for you
to read this you should have
downed a Big glass of something--

Rest as much as you can--

Quiting my job last November
was one of the Best things I
have done --Stress makes it
Much harder to get well-

Threw the yrs I saved up some money
so that if I Ever figured out
what was wrong with me I would
be able to get help --
and be able get the rest I knew I
was going to require to get well again

Well All my bucks are Gone Now--
Was worth Every Penny tho --

Speaking of Money--

Buy your meds in Mexico --
Same meds as in the US--
Way Way Way Cheaper --

No perscription required --
No Doctor Hassell-- Sweet-

I spent about $1000 in Mexico-
Saved me about $12,000-
Im not kidding --

Its worth catching a
flight to a border city-
stay in a hotel --aday or 2-
Will save you money- For Sure --

I go to El Paso--
Thats where I from so I know
my way around --

Saying its Easy To Get Meds in
Mexico is a Understatment-
Big Time --

There are cheap hotels
2 blocks from the Border-US--

Walk across -Dont Drive--

The pharmicas are the first
bussiness you will come to
after you cross --
Dozens of them--

You can get Name Brand
and generic meds--

I try to get the Name Brand-
I have found them to be more
effective than generic in
both the US and Mexico--

Bicillin US $48- Mexico $4
Bactrim DS- 14 (Roche) Mex. $6
Flagyl -30 -Mex.$5

They have perty much everthing--

The pharmacias are Very well
stocked --

Way Cheaper--

I have always been a believer in--
If a little is good --More is Better-
and a Whole Bunch is Best--

So far this has worked very will
for me --If you go this route --
you Have to drink at least 3
gallons of water a day to
keep from getting toxic--

With out Mexico there is
no way could have done this--

AmTrack goes to EL Paso --
so if you feel good enough-
Its a fun way to travel--
The train station is 2 blocks
from the border--

If you go to EL Paso I can
tell you where to get the Best
Green Chucken Enchalads I have
ever eaten--Awsome --

I can also answer any questions
you have--

I have written many posts about
buying meds in Mexico--
(Sunny Vacation to Mexico) is one-
-----------------------------

You also have to keep a Positive
and Optmistic Attitude --

If you Allow lyme to Take Control
of your mind--It Will --
Its not easy -
but you can do it-- I Did --

Its Very Easy to allow depression
to take hold of you--
It happens Quickly-and it could
be very hard to dig yourself out
from this-- So Dont go there--

You need to Realize that we (you) are
Perty Much genipigs-- Now--

Not much is known about how to
treat these diseases--

It took me about 3 weeks of research
on Lyme for me to figure out I was
going to a Pioneer Genipig--Ouch--

I am very glad I figured this out Earily --

One thing that is VERY VERY Important
to do is--

Post a COMPLETE SYMPTOMS list
here on Lymenet--

I Sure wish I would have done this
when I First Got Here --

The Eaisest way to do this is to
Copy and Paste --DR B's symptom list--

When you do this dont just answer
the questions --Yes -No-

Give more details like -
Only at night- pain moves around -
my tempature is 93-
for 3 months--

Fill in your info underneath each Question--

Give Complete-- Clear Answers--

Describe intencity of symptoms
like 1 thru 10 ect

Make it Easy to Read--
You want to Make It Easy -
For folks to help you--

Remember we All are lymees here-

At the bottom of your symptoms list
Give-Any and All-- other info about
your situation like- age -general health
any thing else you have wrong with you--

Include things like -
what other doctors have thought-
What meds you have tried-
Results if any--Include doses and time -

Give Test results- give numbers --

Describe any type of skin rash carefully-
post pictures --

Give All info that you think could help-

Post your Symptoms list-- Many Times--
Doing this will allow long time LNers
to have a chance to see your post-

People will be able to get a
Good Clear Picture of your
situation Quickly- Easily --and Help You--

Most folks who get over these Illness
at some point are going to get
On with there Lives and wont be
coming to LN much anymore --

You Really want these people
to see and read your posts --


I think the vast majority of folks
who have lyme desease are going to
regular Ducks- and are getting the run around-
-It happened to me for 17 years--

Dont Let this happen to you--

Just One visit to a Good Doctor -
change my life Quickly--
and I got Much Priceless Info
from the Great folks here at LN -

If LN was around 20 years ago--
I would have been All Better
many years ago ---

You can get Well Again--

It Takes a Good Attitude
lots of reading-
Good food -Rest -
some Luck and
a Huge Pile of meds --


There is Life after Lyme--
and it can be Perty Good to--Jay--

Posts: 795 | From: Austin tx USA |
 

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Posted by Lymetoo (Member # 743) on :
 
PRETTY nice, Jay and Wink!
 

---

Posted by AZURE WISH (Member # 804) on :
 
up for morningsonshine
 

---

Posted by corinne (Member # 7694) on :
 
I thought I would add my success story, at least my fingers are crossed that this is finally over. I was bit in June 2005 back east and started having symptoms July 2005. It took about a month before I self diagnosed myself with Lyme. I had a wide range of symptoms, fever, flu-like symptoms, rash, bells palsy, neck stiffness, headaches, fatigue, irritability etc.

I saw an ID Dr. for a few months and while on 100mg of Doxy twice a day, I was feeling better. But every time we stopped the treatment the symptoms would be back within days. The ID Dr. said I was having "post lyme sypmtoms." Once I heard that and found this board, I knew that I needed to talk to a different doctor.

Through another support group in my area I found a LLMD and he put my on 500mg of Biaxin and 200mg of doxy a day and after a month I was symptom free, he kept me on the meds for three months total. I am now three months without medication and I have absolutely no symptoms.

I thank God for helping me find this community, I didn't post a lot but I read jsut about every post that applied to my illness.

Thank you to all of you and I hope that you find your way back to good health.

God Bless,
Corinne
 

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Posted by secondtimearound (Member # 7249) on :
 
Seven years ago, 1998:
15 different docs, ms diagnosis that I didn't believe and was finally treated for lyme. One year of pulsing antibiotics and stopped because of elevated liver enzymes but went on to feel totally well except for continuous sinus problems.

May 2005
Started to feel really crappy, just like 7 years ago. Went right on antibiotics and started herxing from the beginning. All of my symptoms returned severely and rapidly. And to make things worse, I developed a severe yeast infection that made my doc stop all of my antibiotics.

I went downhill very fast and was unable to work. No antibiotics and extremely desperate, I started to look for alternative methods to get better. Please know that I have never spoken to Bryan Rosner with the exception of one email, directing me to the Website for his book, but I feel like I owe him and the rest of the people involved in rife technology my life.

This is only my story and if you want to believe it, fine, if not, that's fine too. I'm not posting this to start another rife debate; I'm just posting what I've done to get better. Rife is my major treatment but I also did 14 weeks of salt/c and added antibiotics occasionally along with some diflucan. Mostly according to the outline in the book. I also sought help from a wonderful LLMD who finally got me the proper testing and I found out I was positive for ehrlichiosis and mycoplasm. I know in my heart that the only way to beat this disease is to use more than one method. I also learned that DETOXING is just as important, if not more important than killing the bugs.

It's been a very long and rough year (search my posts) but also a very rewarding one too. I've been introduced to so many wonderful people because of this disease, that in a weird way, and only at this point of my recovery, it's been worth it!

Symptoms Throughout The Last Year


Dizziness
Extreme light sensitivity
Sensitive hearing
Numbness (whole body)
Tingling throughout
Twitching
Fatigue
Insomnia
Uncontrollable Crying
Extreme depression
Paranoia
Afraid to be alone
Afraid to go out in public
Weight loss (30#)
Impotence
Memory loss
Slurred speech
Nightmares
Vision Problems

Remaining Symptoms

Slight tingling in my forehead and occasionally, slight blurry vision in my left eye.

Treatments

Rife, EMEM3d from rifelabs.com (no affiliation)
Salt/c - 14 weeks
Zithromax
Flagyl
Doryx
Diflucan
Epsom Salt Baths (Thanks Marnie)
Steam, ozone (thanks Bev) and infrared saunas
Coffee enemas
3 liver cleanses
Very Low sugar and carb diet

I'm not telling you it was easy, because it was pure hell. But the strength and support I received from my family, this site and others, my doctors and the Lord got me through it and I really, truly feel that I am close to being even healthier than I was before my relapse. Every time I herxed, I felt like giving up but my wife carried me through every one of them. Bryan's book was also the main reason my wife understood what I was going through, when I couldn't get out of bed or just didn't want to, she always referred to certain parts to help me keep my faith.

I went back to work fulltime in Sept. and just started coaching my 12-year-old baseball
team again. There is hope, however it comes very very slowly! If anyone would like any help at all just send me an email and I will help in any way possible.
Sorry this is so long.

All My Best,
Scott
[email protected]
 

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Posted by Melanie Reber (Member # 3707) on :
 
I just love reading these...

thank you all so much for sharing your journeys.

M
 

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Posted by treepatrol (Member # 4117) on :
 
up for the sad people and me
 

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Posted by treepatrol (Member # 4117) on :
 
Author Topic: An Old Timer returns!
GailAnne
Flash Member
Member # 3946

posted 25 August, 2006 10:33 AM
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I was really active on this cite about five years ago...since then, I've been PCR free of LD, healthy, and continue to teach school and work-out at my local gym. Long term IV antibiotic treatments REALLY do work. After four years of six long-term treatment cycles(I had undiagnosed LD for at least seven years prior) I'm Lyme free!
Sooooooooooo my dear LD friends...there IS HOPE and don't give up!
God Bless Gail

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Posts: 17 | From: Holland MI USA | Registered: May 2003 | IP: Logged

From Here:

An Old Timer returns1
 

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Posted by luvs2ride (Member # 8090) on :
 
Hi,

I think I can now safely call myself a success story.

I was "lymed" 10 yrs ago and treated antibiotically for 6 mths even though the ELISA test said "no lyme". After 6 mths, I recovered.

Additional problems developed over the next 10 yrs that I did not connect to lyme. Migraine headaches, stiff neck, shortterm memory issues, hot flashes and finally mental confusion. Aug 05, migratory joint pain hit and 2 LLMDs clinically diagnosed chronic lyme. Funny thing is, now, 10 yrs later, blood tests (western blot at Igenex) confirm I had lyme but can't determine if I have it now.

5 mths of homeopathic treatment cleared up all symptoms but the arthritis which ballooned until I was 100% disfunctional. Jan 06, I was diagnosed with Rheumatoid Arthritis. I abandoned the Lyme treatment and began pursuing any and every known cause of RA.

DIET was everything!!!! Just switching to a vegan diet produced 75% improvement. For the last 5 mths I have been working with a doctor who is not an LLMD but does test and probe your entire body to determine where you have deficiencies. He then focuses on repairing those deficiencies allowing the body to do the healing.

Again, DIET has been critical to my success. He ran a food allergy bloodtest and since eliminating my offending foods, in addition to so much else he did, I am painfree and have been so for about a month.

I met with the rheumie for the first time in 6 mths. I never took his immune suppressing drugs but instead opted for a low dose minocycline protocol that targets mycoplasmas. He was stunned to see my progress. I can't say how much if any, the minocycline deserves credit. But I can definitely tell you diet has a huge and immediate impact.
 

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Posted by BorreliaBrain (Member # 7603) on :
 
anyone want to add their success stories?
 

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Posted by sfcharm (Member # 9392) on :
 
Would love to read about some current success stories and what antibiotic combinations might have worked for you.

Also diet, excercise or alternative therapys???


Barb
 

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Posted by Brussels (Member # 13480) on :
 
2 stories, mine and daughter:
1) I had a very bad start after first tick bite in Switzerland. I got the rash, went to doc, 2 weeks doxy, told I was cured.

A month later, got arthritis, then fatigue came, then eye symptoms, sun light sensitivity, night fevers, and many other symptoms. I got sofa ridden. I could barely take showers on my own, so much fatigue I had. Total brain fog. Forgot my way home, I could barely drive.

Started Buhners' herbs, went better but not cured. Started Salt and C, it made things worse.

Started then ART and Dr. K's protocol with two practioners, then started seeing improvements. From then on, slow improvements, but no total cure. I was told it was going to take time. Loads of homeopathy and herbs, almost no abx at all.

Diet, EMR protection, heavy metal treatment, allergy treatment, teeth, cavitation, scar treament, etc

Slowly better, but not cured. Lyme kept coming back, either by relapses or new tick bites. I live in endemic area, and get bitten every year a few times (about 5 times, in average).

In 2009, after fighting lyme for 4 years, I tried photon therapy, following dr. W's protocol and loads of muscle tests. Well, that nailed borrelia and lyme for good. From then on, no more lyme for me, despite new tick bites.

I still continue with enzymes (Rechts), chlorella, and some stuff like minerals (moor, diatomaceous earth), sometimes omega 3, in winter vit D3 and propolis, and eat only organic as much as possible, cook at home (but do eat in restaurants twice a week now), exercise, do meditation and breathing (following mostly the ARt of Living technique).

My lyme doctor told me then, when he saw me and told me 'cured', that it was incredibly fast. I told him: how could 4 years of daily suffering be fast?

He then told me I was his worst patient then. That no one as bad as I was could get healed so fast like I did. And he mostly treat lyme patients and had a long waiting list...

So, if I did that, many of you all can do it. Before lyme, I had fought chronic candida for decades, literally, so when I heard borrelia is a tough infection to get rid of, I knew what that meant!

2) My daughter caught lyme when she was bitten in Belgium, by a tick on her head. She was only 2 years old!

Day 1, got bad symptoms, tummy ache, nervousness. I found the tick next day after the bite, so mini, almost invisible. It walked after I pulled off, that is how my husband believed it was a tick!

Amoxy for about 3 weeks... She got worse every day, I stopped amoxy then, went to my doctors who do ART. Then she got also better, with homeopathy, microcurrent, herbs, and tapping.

Then every year, bitten again, new pathogens, new borrelia strains. We tried amoxy again, this time 5 weeks. No result, still as sick as a child can be... Almost not walking, arthritis, horrible pains in the tummy. So from that day on, I decided, no more abx for a tick bite.

We again, did the natural way, following ART. Again she got well. Until next bite, which was infected with FSME (tick born encephalitis). That made her borrelia revive, and it almost killed my child. It was the most horrible infection ever.

Bad luck: naturopaths and doctors have to report FSME to big hospitals and send the sick person to big hospitals. They are not allowed to treat on their own. I had bad experiences with hospitals, and as it was a virus, western medicine have no tools to deal with it, except giving stuff for pain.

So I said: I take her to a hospital, they will kill her. No way. I trust them next to zero for chronic diseases, and for tick born diseases, my trust is zero. They would not allow me to give my child even Vit C, nor Vit D3. So how can I take her to hospital?

So I was left no choice than treat her home, all on my own. To treat a disease that cripples or kills in 2 to 3 weeks, with a child that already had lyme on top, full of allergies.

Well, muscle tests, ART (I had learned that a bit then), dr. K's help through Gigi here (she called him to ask how to treat), and another crazy experience saved her. She was declining every day. From a day to another, she got a bit better, then I knew it was gone.

The good thing with FSME is that, the acute form has really a shape and time to happen. So if she went through the 3 weeks and came out, it means, no sequels. Many people get paralitic, constant headaches forever, or deaf, in ONLY 2- 3 WEEKS time! then have to live with that forever!

Anyway, we went through that.

then a year later, she got a relapse from lyme and went to wheelchair, due to swollen knees. Doctors started her on rocephin, iv.

Day 2 of rocephin, I pulled her off the treatment. And off the hospital. I said, if I knew it was lyme, I wouldn't have brought her to hospital.

I thought she had broken her knee, as it was painful and swollen, it was middle of winter, I didn't know it was a lyme relapse. So I treated her home.

That is when we tried photon therapy with her. And her knees got better in a couple of days, I'm not exagerating.

Really too fast to be true. That is when I tried photons on myself. Photons and homeopathy, of course.

She is today a 9 year old girl, since photon therapy too, she's off lyme. Once only, lyme came back, but it took only two treatments, during two weeks, to have it gone back again. She didn't miss any day at school for that.

We still needed to treat her allergies after, which are muuuch better today. She still eats loads of veggies and fruits, mostly organic, we still avoid wheat, and she takes same stuff I take.

She still gets bitten, every single year. But so far, so good. Peace is also back, we're less frightened after a new tick bite now. Just because there are photons, there is ART and muscle tests, there are nosodes, and I think our immune system is working somewhat better.

Once lyme is dormant, I swear to you all, it is like you NEVER got lyme. There are zero symptoms, no fatigue, no brain fog, no pain, zero. You can be fit mentally, physically and emotionally. You don't need any killer to keep you on that state.

The most amazing thing that happened to me was when I was listening to Bach, a mess, I think. I suddenly felt all colors again, like the whole piece was talking to me again, directly to my heart, so colorful and huge!

I said: My God, I didn't know that lyme had taken that from me too! I now can listen to music and feel it so deeply again!!

I cried like a baby, that met her mother again after long time no seeing her. Years and years have passed, and music meant nothing to me anymore, just because disease had taken it from me. And I didn't even notice that was taken from me.

My daughter is fully active too. She plays classic for 4 years, and is now staring jazz piano.

She plays pop in the school band, practices her jazz dance, goes swimming, continues her French, English and German (at school).

She rides her bike about 6 miles a day, up and down very steep hills, to go to school and come back. No matter what weather, rain, snow, heat.

She's not the strongest of all against infections that run in school or neighborhood, nor allergies (she still got some left), but her life is fully back.

Our motto is: never ever give up!

And another motto: Borrelia dormant = no borrelia at all. There is healing to chronic lyme!
 

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Posted by ukcarry (Member # 18147) on :
 
Dear Brussels,

How lovely to hear that you are both so much better and sustaining your good health. What a lot of wisdom you have gained along the way!

I was so touched reading your account, and you wrote so beautifully about your experience when listening to Bach. Thank you for resurrecting this Success Stories thread and for thinking of us,

All the best,

Carry
 

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Posted by Lymetoo (Member # 743) on :
 
Moving to General Support with the more current "Success Stories Thread."
 

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Posted by Lymetoo (Member # 743) on :
 
Please add more stories here:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=015820;p=3
 

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