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» LymeNet Flash » Questions and Discussion » Medical Questions » Success Stories... (Page 1)

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Author Topic: Success Stories...
Melanie Reber
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Many come to LymeNet desperate for answers and looking for some glimmer of hope...

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.


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

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


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Melanie Reber
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Just wanted to add that if any of you are uncomfortable with me using your words here...

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

Thanks, M

------------------
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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TX Lyme Mom
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Melanie,
You are now officially dubbed as our "Librarian" for indexing our Success Stories here at LymeNet.

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.


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Melanie Reber
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TLM,

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

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

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


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dontlikeliver
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Thank you so much for posting this - it's given me a bit of hope on a dark day.

dll


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Melanie Reber
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David95928
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Posts: 647
From: CA
Registered: Jan 2003

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


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

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


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runner21
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Posts: 727
From: jacksonville,fl usa
Registered: Dec 2001

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


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

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


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Melanie Reber
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lymebrat
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Posts: 1811
From: NH , USA
Registered: Oct 2002

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


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

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


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Melanie Reber
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chrisb123
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Posts: 44
From: Raleigh, NC, USA
Registered: Jan 2003

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.


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

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


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Melanie Reber
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jetpilotjack1
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Posts: 85
From: Madison, WI, USA
Registered: Dec 2002

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


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

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


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Melanie Reber
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lymebrat
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Posts: 1779
From: NH , USA
Registered: Oct 2002

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

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

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


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Melanie Reber
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sueinnj
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Posts: 110
From: Fair Haven, NJ USA
Registered: Apr 2001

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


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

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


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Melanie Reber
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Houston Lyme Pie
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Posts: 415
From: Houston TX
Registered: Jun 2002

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!


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

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


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Melanie Reber
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richtersl
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Posts: 526
From: New Hope, PA
Registered: May 2002

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


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

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


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Melanie Reber
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Phillygirl
Flash Member
Posts: 16
From: Roanoke, VA
Registered: Dec 2003

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.


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

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


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Melanie Reber
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riversinger
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From: California
Registered: Nov 2003

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.


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

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


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Melanie Reber
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AshleysMommey
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From: Lancaster, PA
Registered: Nov 2001

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.


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

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


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aaronkatie
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Sweet Melanie,

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.


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Melanie Reber
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From: Aurora, CO, USA
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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


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

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

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


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lifeline
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Hi Melanie,

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


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Melanie Reber
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SandiB
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From: North FL USA
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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

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


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Melanie Reber
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dharmacleaning
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From: Hancock, NH 03449
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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

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


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Melanie Reber
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GiGi
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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

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


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Melanie Reber
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KJ
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From: Houston, TX
Registered: Apr 2001

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)

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


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Lou B
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From: Totowa, New Jersey
Registered: Oct 2000

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).]


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Dayle Ann
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From: NE USA
Registered: Sep 2001

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).]


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TX Lyme Mom
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Deleted. To be re-posted in a revised format at a later time.

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


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Melanie Reber
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greg
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From: frederick,md,usa
Registered: Jun 2001

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).]


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Melanie Reber
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mendy
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Posts: 5
From: cleveland, TN
Registered: Aug 2002

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).]


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Melanie Reber
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Kara Tyson
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From: Mobile, AL
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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).]


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Melanie Reber
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bpeck
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From: VT
Registered: Oct 2002

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).]


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Melanie Reber
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RoadRunner
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From: ct
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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).]


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TX Lyme Mom
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Melanie,
One more teeny weeny suggestion if you don't mind. Is there any way that you can insert the original date that each of these stories was posted?

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.


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Melanie Reber
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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]


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TX Lyme Mom
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Melanie,
I knew you'd love me for that belated little suggestion.

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.


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StrengthToStrength
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Melanie,

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.


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Beverly
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Melanie...YOU are amazing!!! This is wonderful!!! Thank you for putting this here in one place for all of us!!!

Bigs hugs to you....Beverly

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


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TX Lyme Mom
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Melanie,
Wow! I can't believe you've managed to overhaul this whole thing already.

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.


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Spotted pony
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Melanie,
Thanks so much for taking the time to put this together .
Good news is always therepeutic. I'm feeling better already!
~~Spj

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Melanie Reber
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You are ALL so very welcome!

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]


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Melanie Reber
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UP for KAM and others who are in need of a little encouragement tonight

------------------
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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Lishs mom
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Melanie,
I dont think I can officially be on your list of success stories....
Y E T
However, after 2 years of orals, 10 months of rocephin, and continued orals after that, Lishka is off her heart meds, hasnt had a stroke or seizure, and is remembering, driving, ice skating, skiing and riding her horse on nearly a daily basis. We have mostly good days lately, which is really nice.

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).]


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TX Lyme Mom
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I hope that Lish's mom would consider allowing her story to be listed as either an "Amazing Progress Report" or as a "Success-Story-in-Progress" instead, if she feels that it's premature to list it as a success quite yet.

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.


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kam
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To the top!
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TheCrimeOfLyme
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"Im at least an 80 percent sucessor" Hehe

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.


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Lymetoo
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Thanks for posting these, Melanie! I know this took alot of time and effort! I was gone when this was first posted, so I didn't see it. Great job! I guess I should add my story .... later!

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


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Poochini
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Can I add my success story?

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


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aaronkatie
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From http://flash.lymenet.org/ubb/Forum3/HTML/009465.html

Katydid
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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!


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Jon A
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Hi Everyone,

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.


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Kathy Boss
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Malanie,

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


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Melanie Reber
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I am so pleased that you guys are adding your wonderful stories!!!

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]


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Kathy Boss
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Malanie,

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).]


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Melanie Reber
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Oh Kathy,

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


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TX Lyme Mom
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If anyone decides to look for Kathy's old posts about her successful therapy using ICHT, then be sure also to look for her posts about using blood thinners (namely, Plavix, if I recall correctly) because of her almost life-threatening complication with blood hypercoagulation following her ICHT therapy. I'm convinced that this was a very important part of her story, too -- one that she perhaps doesn't emphasize enough.

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.


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bpeck
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Melanie:

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


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HaplyCarlessdave
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Most of my success story can be read here: http://dave.clarityconnect.com/LymeDiseaseSUCKS.html
Maybe I'll never be able to do quite all the physical stuff I once did, but as I got lyme just at age= 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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LaureenP
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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.

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Lishs mom
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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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Melanie Reber
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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).]


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Lishs mom
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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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Kathy Boss
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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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Kathy Boss
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Tx Lyme Mom

Are you there?


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thomps14
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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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Melanie Reber
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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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frenchbraid
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frenchbraid
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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

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


Posts: 948 | From Northwest, NJ USA | Registered: Jul 2003  |  IP: Logged | Report this post to a Moderator
frenchbraid
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frenchbraid
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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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kam
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----------- RESERVED! -----------------------



Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002  |  IP: Logged | Report this post to a Moderator
minoucat
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Kam, that's great. Reckon I'll reserve this spot too, as well as moving this thread back up.

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Lishs mom
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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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lookin4answers
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This is great!

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

~Amanda


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lazerorca
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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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flyers999
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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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trecetetodromonmetabia
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Anyone who has more success stories, please respond to this post.
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treepatrol
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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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Melanie Reber
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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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