LymeNet Flash: Wanted: Stories of folks who beat Lyme.

This is topic Wanted: Stories of folks who beat Lyme. in forum Medical Questions at LymeNet Flash.

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Posted by ArtistDi (Member # 2297) on :

In this season of hope and miracles, I want
to start another thread about actual stories
of folks who beat this blasted illness. I
will begin...

#1: I recently was introduced to a woman in
my own town who had Lyme. She told me that
she was ill for nine years and had three years of intense therapy. Her illness was
like mine--chemical sensitivity included, which only makes me believe we were bit by
the same strain.

Anyway, the therapy was rough for her, and at
the end she was very ill from doing many rounds of IV. She decided after 3 years of
therapy to go off because she felt so sick,
and even believed she was going home to die.
Not so, my friends. She said it took 60 days
for her body to work through the die-off, and
then she worked with a holistic practioners
to help her regain her immune system. It took a good year (this one), but she is well
again and has relatively no chemical sensitivity now. True story. She is off all
meds. First time she feels good in 10 years.

#2. A friend of mine from my church who also
has Lyme told me about a woman that she knows. The woman was incredibly sick from
Lyme, lost her job, her house and had to live
with her parents again. Five years or so of
finding the right docs, dx, treatment. The
woman beat it, is working and owns another
house. End of story. Amen.

Please have others post who are well to give
encouragement to the rest of us. Or you write about someone you know. It helps.

Posted by TX Lyme Mom (Member # 3162) on :

ArtistDi,
I assume that what you are really seeking here are the Success Stories of folks who beat "late-stage" neuro-Lyme, am I right?

Our Moderator Lou has promised to help set up a special Forum just for this subject because, as you know, whenever someone recovers, they tend to want to move on with their lives. It's just too stessful for them to spend much time here at LymeNet on a daily basis, re-telling their Success Stories of Remarkable Recoveries over and over again. Consequently, those stories tend to be posted ONCE, and then LOST in the bottom of a heap of other topics.

We've got to find a better way to salvage those stories and display them because this is a question that comes up repeatedly.

I have proposed a special webpage (or Forum, or whatever) just for this special purpose. The RA patients at "rheumatic-dot-org" already have such a list at their website. You can click on "Personal Histories" at www.rheumatic.org in order to see what I'm talking about.

THAT is EXACTLY what we need here at LymeNet -- something that's readily accessible and easy to find, rather than an occasional post that gets lost and buried amongst some 80,000+ other messages which were posted within the last year or so.

Point in fact, our own daughter quit coming to LymeNet because she stated that she felt ready to move on with her life now and that she couldn't allow all the old feelings of hopelessness to get her down now that she is starting to have hope of a future and a "Life After Lyme." This board was her lifeline for many months while she was going through the worst of her tribulations, but now she feels the need to leave it behind so that she can expend what little extra energy she has starting to rebuild her life again.

Maybe that's what Ihunter has been trying to say, too, except that he doesn't seem to comprehend yet the enormous and very real differences which exist between tertiary Lyme and acute, early Lyme. This is upsetting to folks who are still quite ill with the complications of Late Lyme and who have not yet reached a stable plateau from which they can hope to see the sunrise.

This reminds me of the joke we used to repeat over and over last year. "I think I'm starting to see the light at the end of the tunnel now, but I only hope that it's not another @@##$%% train with its headlights on coming straight at me again!"

That's exactly how most nuero-Lyme patients feel when they first start to see a glimmer of light and hope at the end of a long, long journey. And that's what's so hard for NON-Late-Lymies to understand.

Anyhow, I do believe that we should welcome ALL stories of Success, including the lucky folks who received early treatment and who did not suffer relapses. Good idea.

Let's urge Lou to get BUSY -- because he PROMISED -- and because the Fund Drive was successful and we reached our GOAL! He promised that when they did their next regular quarterly upgrade of the website that they would TRY very hard to make this happen.

Lou, where are you???? We're waiting. Patiently. (Not)

Posted by ArtistDi (Member # 2297) on :

TXLMom, you are right...I want stories from
those who kicked late stage Lyme. I like
the idea that has been proposed, because then
it is always accessible. You're also right,
as those who battled back from Lyme don't
want to rehash it all over again and again.

Ihunter, I think it is great that you have
caught Lyme early on and recovered fully
because you know what to look for and also
have a strong immune system.

Some of us don't--didn't get a strong enough
immune system to begin with or know what had
happened until it was too late to get the
Lyme in an earlier stage.

It is unfortunate that there are hard-luck
stories here, but in reality they exist, so
this website is a comfort to just have others
to relate to. No one asked for this blasted
illness, so we do the best we can trying to
forge ahead. Hopeful stories are what we
need to get through all the crap we go through.
Di

Posted by Sue vG (Member # 3143) on :

Removed by Sue vG

[This message has been edited by Sue vG (edited 08 December 2002).]

Posted by Mo (Member # 2863) on :

.

[This message has been edited by Mo (edited 12 December 2002).]

Posted by TX Lyme Mom (Member # 3162) on :

Ihunter:
Here's a link to The Rules. It specifically states that comments must not be harrassing, with the implications that neither should they be hurtful. http://flash.lymenet.org/ubb/Forum3/HTML/006699.html

If any of your messages were deleted, then it's because our Moderator Lou B. found them to be offensive. Anything that discourages a person who has chronic Lyme from seeking treatment from an experienced LLMD can be seen as being harmful and should be deleted because they violate the spirit of The Rules.

If you desire your presence here in this group to have a positive impact, then I hope that you will learn to edit your comments yourself so that the Moderator doesn't have to do it for you, and also learn to be sensitive to others' needs and feelings.

To Other LymeNetters:
This post is supposed to be about ArtistDi's request for Success Stories. Let's try not to get distracted from the original topic title by digressing to respond to disruptive comments from anyone who is not adhering to The Rules.

Let's let Lou be the Moderator-in-Charge because he is quite capable of doing it best if we do not make his job more difficlult by attempting to "moderate/mediate from the sidelines."

OK, the original topic here was........Who can remember what it was?

PS - Ihunter posted while I was posting, so I'm "editing" now to suggest that perhaps we DO need a special focus somewhere for folks who have EARLY Lyme, so that they do not panic, as Ihunter insists. Let's work on that idea. It needs to be easily found and accessible for newbies who do NOT have complicated cases of neuro-Lyme (whether early OR late-stage neuro-Lyme).

PPS - I'm "editing" again to suggest that the Forum for Success Stories could clearly designate the distinction between Early Stage Cures and Late Stage Recoveries. Then, there would be an appropriate place for all the folks like Ihunter to offer their experiences to benefit those who would be confused otherwise by finding only the cases that are so difficult to overcome. Good idea. Let's try to let this egg hatch.

[This message has been edited by TX Lyme Mom (edited 08 December 2002).]

Posted by Sue vG (Member # 3143) on :

Removed by Sue vG

[This message has been edited by Sue vG (edited 08 December 2002).]

Posted by Sue vG (Member # 3143) on :

Removed by Sue vG

[This message has been edited by Sue vG (edited 08 December 2002).]

Posted by JRWagner (Member # 3229) on :

Good grief....looking at this I see the problem.

Yes three weeks of ABX cures SOME people, not all, and definitly NOT 98%.

However, and THIS is the key to this whole
"problem" here. What IF the person really needed four, five or six weeks to fully eradicate the bug? Saying three weeks cures 98% of those bitten is not a FACT.

I was bitten, saw the rash, and got my three weeks. I wish I had known what I know now via the good people here. I would have asked for much more time, especially since my reaction was VERY severe.

This is the point...It will NOT hurt for someone to go on a longer course on antibiotics when FIRST bitten, but there can be devastating consequences if one is put on only three weeks and is told they are cured when in fact the bacteria is still there or has gone into the cystic form.

Ihunter...I think you mean well but have not considered the worst case scenario, which is becoming more and more common. Better to take more than less ABX to make SURE the job is done.

Did you have any symptoms when you were bitten other than the rash?

Doctors now say to take ABX for at least two weeks AFTER all symptoms are gone. ALL.

Giving anyone the idea that only three weeks is OK for the majority is VERY optimistic and a bit careless. I am NOT saying you are trying to hurt anyone...just that if someone listens to the THREE WEEKS
protocol and really needs more...well you know what can happen.

Many of US here are proof of that. Hell, no one really wants to be here. There is so much to learn about this disease, and MANY people here have made important contributions in the quest for solutions.

With the facts becoming hard to refute, the THREE WEEKS dictum is becoming outdated.

I know MANY doctors that put their patients on at least SIX weeks of ABX just to be sure.

I would NEVER advise someone simply because it worked for me...I would also warn them that they MIGHT need more time. That is the responsible way to help.

How the hell did you get 100 tick bites?
Have you been tested for co-infections?

Peace, love and wellness
JRW

[This message has been edited by JRWagner (edited 08 December 2002).]

Posted by lymebrat (Member # 3208) on :

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

"Lyme is an enigma. While the debate rages over proper diagnostic and treatment procedures, patients get sicker and some even die." Pat Smith, LDA

Posted by Sue vG (Member # 3143) on :

Very well stated, JRW!

Posted by richtersl (Member # 2554) on :

I was on steady courses of antibiotics for close to 4 years. Then, during a military mobilization exercise, it was pointed out to me that I never received my shots when I enlisted. So, I got them all that day. Fifteen years AFTER I had enlisted!

But they could not have happened at a better time as I came to find out. I scheduled an appointment with my LLMD that week and she recommended stopping the antibiotics to "see what happens". Nothing happened! No symptoms. Nothing!!!! Until then I had never been able to stop antibiotics without paying a BIG price. Then best I can figure is that those shots caused my immune system to kick butt.

I am grateful for the series of events that led to that.

Posted by ArtistDi (Member # 2297) on :

I never meant this thread to be like this. Thank you to those who understood what I wanted to hear. I think that I will be quiet now...

Posted by TX Lyme Mom (Member # 3162) on :

Here's a link to a post entitled "I would like to help" posted by a former LymeNet member TODAY who came back to state that she is well now.
http://flash.lymenet.org/ubb/Forum1/HTML/013240.html

Thanks, Sue, for posting this message, but how on earth could you possibly have known that your message would be so timely or so welcome right now?

[This message has been edited by TX Lyme Mom (edited 08 December 2002).]

Posted by tomwisefoole (Member # 2580) on :

This has been an interesting and meaningful thread, and i want to contribute something to it.
i think everyone posting here has made for a meaningful exercise in good processing and communication. of ideas and thoughts. in one thread like this, i see so many important aspects of the lyme illness, the different degrees of suffering and healing, and very good ideas that have come from this. i Completely agree that there should be some kind of link to a place where we can find success stories,and a link where we can address the issue of Early Lyme. and differentiate between Early treatment and Late lyme,and its treatment. all meaningful ideas.
i think i can contribute here because My story is sort of in the middle.between early and late and it Has been a good success story ,so far. anyone can find all my posts by searching under my username (tomwisefoole). But briefly,(is it possible to tell a lyme story briefly?lol,probably not). In the beginning,6 years ago,(seems like yesterday) i was in a perfect position to treat early lyme in the right way, with say, 6 weeks or more of doxy, and i probably would have had a full cure. i found the tick in my arm the morning after going hiking in the wet woodlands of california coast (a high lyme tick location) i was concerned, but naiively uninformed. my nurse friends said "wait a month and see if i feel symptoms"(1st mistake). i should have gone right away for doxy.
after a month, i started to feel a few aches and symptoms at the bite sight, so i knew something wasnt right,and i went into a general health clinic,where a well meaning but not lyme literate doc,said "i dont think you have lyme but i'll give you 10 days of 200 mg.tetracycline(2nd mistake) (wrong abx ,wrong dose,wrong duration). so i took the abx for 10 days and actually fely alot better from it. felt just about all better. (which makes me believe that IF a person bitten does get immediate treatment with the right abx ,dose,duration etc, they CAN get cured. i almost had that chance.
but after a month went by, i started to slowly feel the aches and muscle soreness at the bite site coming back, and in my ignorance and maybe denial, i dunno, i did nothing about it for the next 7 months. i just lived with it. all i suffered during this time was a slow,gradual increase of the muscle ache,that wouldnt go away. so i naiively thought, "well, how bad can this lyme thing be..." can you imagine? such naiiveity? wow. what ive learned since then!! . Then after doing nothing about it for those 7 months, all of a sudden, the lyme hit me like a hurricane. i became stricken with severe digestive disorder, fatigue, flu symptoms, weakness, etc...and i Knew ,finally, i Had to do something.
i later learned that what happened,was that the lyme had entered what they call the Early disemminating stage. and while for many people that stage hits much sooner, maybe right away , depending on the strength of their immune system, or for some maybe after a month or two, but for me it didnt hit until 8 months after i was bitten, because i did take that little dose of abx in the beginning.
so i began to get some treatment now that i was very sick. for some reason(maybe mistake #3) i went not for abx but for accupuncture. the accupuncture actually helped alot. it boosted my immune system, the digestive symptoms got better, the flu etc, i got a little better in general, but was still sick. the next month i went to a lyme literate doc. went to Igenex for the blood test. the test came back positive for lyme. the doc put me on biaxin , which i took for 4 weeks,and then stopped because i didnt feel comfortable taking abx for a long time. (mistake #4).(i should have stayed with it for at least 2 more weeks. ) the biaxin helped tremendously, i'd say i got 75 % better. but a few months later , the symptoms started coming back. so i took another course of biaxin, this time 6 weeks and i got alot better. but 8 months later, the symptoms started coming on again.
(people can read my past posts about what i did from that point/i became immersed in natural medicine,alternative treatments,like the zapper, rife, colloidal silver, herbs,many vitamins, detoxification therapy
etc...and it all helped me to heal in a good way. i havent had to take any abx in these last 4 1/2 years. i dont 'know' if i'm fully healed ,or cured, i cant say. but, i got my health back, my life back, im working , and living in good health. ive learned alot as the years have gone by, and learned alot by coming to this forum. i believe abx are important and i favor their use if you see results. but my story has been one of success using alternative medicines and treatments, and i also recommend people being open minded to experimenting with them. but each person is an individual and what works for me may not be the same in the same way for everyone.
in my last few posts i mentioned that i have been using a brand of mild silver protein called Invive. and that it worked very well to eradicate my symptoms the last time they came on me, this past summer. today , i feel strong, healthy, and full of life , not perfect but quite good.still have a few aches and pains, but i can manage what i have.
so my case was an early lyme , but also a semi late lyme, maybe somewhere in the middle. it took me the better part of a year to heal when i was very sick 5 years ago. and in these last 5 years, maybe every 8 months i might feel some mild symptoms come on , i take my treatments and i get better again. maybe in the future i might take another 6 weeks of biaxin, just to see what it might do for me. but for now, i feel well.
and i guess the positive message i can offer to people at whatever stage they may be in, is that i have seen what healing effects can happen from alternative treatments, and nutritional medicine, vitamins, herbs, colloidal silver, mild silver protein, the zapper, etc... and that maybe these things are worth considering. they have all helped me in healing . best wishes to everyone.

Posted by JRWagner (Member # 3229) on :

Richtersl...what shots did you get? Glad you are better!

Tom...whew...! I see you too are better...have you ever addresses the cystic form of the bacteria. Have you been tested for co-infections? Perhaps these are the cause of your problems...maybe not?

MORE STORIES PLEASE!

Peace, love and wellness
JRW

Posted by troutscout (Member # 3121) on :

I second JR's comments!!!

Trout Scout

Posted by richtersl (Member # 2554) on :

JRW-

If I remember correctly, I got the following shots/vaccinations: flu, polio, cholera, and DPT. I would have gotten a hepatitis shot, except they had run out of vaccine. But that didn't matter...these seemed to have done the trick.

Linda

Posted by caat (Member # 2321) on :

I haven't been cured, but have had real improvement. I have later stage chronic neuro-lyme. Treatment started years after infection.

After 2 months of doxy 400mg day I stopped abx for 3 days. Had a dramatic total relapse. Ataxia etc., reading level drop etc. Took a month to get back to where I was.

After 6 months of doxy 400mg day, stopped abx for 5 days. Had a relapse- was not nearly as dramatic, and it only took 2 weeks to get back to where I was.

It's not a cure story- but it is encouraging.

Posted by Jon A (Member # 2870) on :

Hi Diane, Do I get some kind of big prize for making it through your post, or what. LOL!

Great info from all, no need to name names.

Wow, I feel like my eyes just won a battle getting to the end, that was no post, it was a book!

From April through July of this year, was by far the worst period in my life! No questions asked? Well, I must say, after all the vitamins, supplements, herbs and abx I have taken this year, I should feel better.
I do, I feel really good most of the time.

I am still on abx, but all my cyclinders are firing again! I will not be really happy until I am off abx altogether, but I do feel like I am heading in that direction.

Keep the faith everyone, when theres a will theres a way! My miind is back after a short Lyme vacation!

Be well, get well, take care, jon

Posted by JRWagner (Member # 3229) on :

Jon...cool.
Richterl I did not know you were a woman.
You are in the armed services? Wow!

Did you read the post on Flu shots? EEK!

I wonder if there was only one vaccination, or the whole lot together that helped you, OR was it just a coincidence?
I guess we will never know...
Now, let me see...where can I get all those shots?!

MORE STORIES PLEASE! Of course, some people who are better are not posting, soooooooooo
if anyone knows anyone who fits this bill could you either get their story or ask them to post here on Lymenet?

Good night all
JRW

Posted by HaplyCarlessdave (Member # 413) on :

SUCCESS STORY:
(one that wouldn't have happened without you folks on lymenet!!)
It's been a struggle. But I am getting better and better, and still off abx. It took more than 2 years of LLMD treatment, after I relapsed big time following initial aquatic aviarian treatment. My story is here, in several pieces that I occasionally added to the page: http://dave.clarityconnect.com/LymeDiseaseSUCKS.html
My symptoms were mainly physical but there was a touch of neuro in there, too, when things were bad. I've posted detail in many posts here; if you'd like me to clarify anything, let me know.
I will help as much as I can- I owe it to you. (even if it's mostly different folks here)
DaveS

Posted by Stella (Member # 3119) on :

I'm a success story in the making!!!

I can't say I am totally cured because I'm still on IV Rocephin, supplements, and medication BUT I do know that my blood tests are normal now. After 18 months of devastatingly irregular blood tests I am finally within the normal ranges in EVERYTHING! My levels of most everything used to be WACKO WACKO WACKO!

Anyway, I just want to let you all know that I am getting my life back together. I can do things now..... I am working out a bit, and aside from the fatigue my Lyme symptoms are practically gone.

As I said, I'm still in the game, scared to the bone of what will happen when I go off my meds but living a good life. I can truly say that I am happy and pretty excited about what the future will bring.

There is hope now and there will be hope later, there will always be hope...... hang on tight to it.

I wish you all the BEST OF LUCK!

You are in my prayers.

Peacefully,
Stella

Posted by TX Lyme Mom (Member # 3162) on :

Stella,
The relapse rate following the third-generation cehalosporins (such as Rocephin) is quite high. We now understand better WHY this is so and also we now understand better what to do about it.

If you are working with an experienced LLMD, one who is a member of ILADS, you'll be in good hands because he will recognize whether or not you need to switch to another abx family, following Rocephin, in order to prevent relapse.

There are also reasons why the lab work looks good at this stage and why you might get "false negative" WB results on follow-up lab tests. This can be problematic, of course, but there are ways around this problem too. So, do not despair if you start to lose ground when you stop Rocephin. Stick around LymeNet and continue to learn about the science of treating LD.

You might be one of the lucky ones who does make a good recovery without relapse. If not, don't fret because now the LLMDs are able to handle the relapse cases much better than they could not very long ago. They are learning so much at a very fast rate about how Bb behaves and why it is necessary to switch abx to "catch" Bb in all its many pleopmorphic forms and stages.

Prior to now, there were quite a large number of "treatment failures" due to relapses because the LLMDs hadn't figured out as much of the science concerning Bb. Nowadays, the therapy protocols for treating late-stage neuro-Lyme are changing at a faster rate than they can be written about without becoming out-dated before the ink is dry.

Stella, your story WILL become a Success Story too, someday soon I hope, but right now it might be safer to classify it as an Amazing Progress Update story instead.

PS - I'm "editing" now to acknowledge that I see that you did state that your story is a "success story in the making."

[This message has been edited by TX Lyme Mom (edited 09 December 2002).]

Posted by Appleseed (Member # 26) on :

Hi
Well All I can say is that I am still here! This is the first time in a long time that I have had internet service,so it has been a long since I have posted.
Yes there is hope! This is my first month of being really off treatment for about three years. And I feel great! I still have a few joint problems but I am old HA! After having this for about 14 years I feel great! Don't give up,I know it looks black but you will get better. Make sure you have a good LLMD,and protect him as much as you can. There are still alot of meanies out there.
John

Posted by CherylA (Member # 2857) on :

I hope to add my son's story to your list of fully recovered late stage LD. He continues to improve and is on a very low dose abx now. This is the first year since beginning school at age 5 he's been able to attend almost everyday with minimal symtpoms. He still has some fatigue which I assume is from herxes and it's a good thing it's been happening on weekends so he doesn't miss school.
Cheryl

Posted by TX Lyme Mom (Member # 3162) on :

It just occurred to me that THIS is the FIRST time that there have been so many Success Stories posted to this kind of topic question that I can remember. Whenevr anyone has posted similar questions like this in the past, very few folks have bothered to respond.

Are you thinking what I'm thinking?

I have a hunch that "Mr. Deleted" did us a big favor by posting his nonsense (now deleted by the Moderator). It has had the effect of firing up this crowd to prove him wrong in a way that hasn't happened on a topic like this before.

Nice job, folks! Keep the stories coming. Lou has promised to give us a special forum to showcase them. So, start writing them up in a little bit more detail so that YOUR story will be READY as soon as Lou gives the signal that the new forum is ready to display them.

In the meantime, if you haven't seen the stories posted at the "rheumatic-dot-org" website, then you might want to take a look. Those stories might help you figure out how to compose your own. Click on "Personal Histories" at: www.rheumatic.org

Also pay close attention to the few webpage links which they have showcased there (at the very end of the webpage). A few of you will probably be able to write a more detailed "autobiographical sketch" of your own Remarkable Recovery or your "Amazing Progress Update" or whatever you wish to claim as your Success Story.

A few LymeNetters (Trout Scout, Wild Condor, maybe others) have already done so, and maybe they can help teach us how to start when it comes to designing a webpage. I'm sure that Lou can arrange it so that he'll gladly let you post your own links.

Posted by sueinnj (Member # 918) on :

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

Posted by GardenGirl (Member # 3322) on :

I don't know if I'm gonna be a success story, but I think I'm on the mend.

By all accounts we figure I got infected in early September of this year. I went to my regular doc with a laundry list of problems/symptoms, the top of the list being overwhelming fatigue. I hadn't even considered Lyme, but requested that he test everything -- hormones, adrenal, thyroid, you name it.

Being the good doc that he is, he tested just about everything. Unbeknownst to me, he threw in a WB and ELISA test. These two came back positive on October 25, 2002.

I've done 2 weeks doxy @ 200 mg/day, 2 weeks doxy 400 mg/day, and 2 weeks doxy 600 mg/day. I saw Dr. L. in the middle of this and am waiting for his tests and my initial follow-up appt. He confirmed the Lyme diagnosis.

He wanted me to start IV Rocephin two weeks ago. My insurance wouldn't cover it without PROVING neuro lyme, so I had a spinal tap. Most of this came back normal, one test is pending. So no IV at this point.

About a week ago I got off the habit and/or forgot to take my vitamin/supplement regime. In the last week I have seen a marked improvement in my health. The brain fog has lifted, aches & pains are few and far between and the time between symptoms is a long time. I feel about 75 -80 % of my real self. THe fatigue continues, but I am sleeping well. Haven't herxed in several days.

I am continuing the doxy, although I don't know for how long I should take it. I don't know if I should start back up on the supplements or not.

The only other thing is that in the midst of this Lyme, my hypothyroidism flared and we altered my medication. I am taking a high dose of Armour thyroid, which is 80% T4 and 20% T3. I believe this has helped, because I can now function at work again.

I really feel that I am gonna beat this thing! It's a terrible disease and one that I wouldn't wish on my worst enemy.

I love coming to this site and reading all the info and stories. I don't have much to contribute usually. Thanks for putting up with me. :-)

Kim, aka GardenGirl

Posted by Lymetoo (Member # 743) on :

Appleseed! I am just SOOO impressed! You were so very ill!! I was really worried about you! But of course, our wonderful doc came thru for you!!

I hope you continue to do well!! I've been doing pretty good, but I've been having really bad sciatic nerve pain, and that has made me nearly crazy [shut-up, Tincup! ]

It's better right now, so I'm holding my breath! You've given me alot of hope today!! Tell Nan hello for me!!

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

Posted by troutscout (Member # 3121) on :

I am really enjoying all of these tremendous posts!!!

TuTU....I always thought you had a hot little a**. (lol)

AS once Again...we prove that good, conquers evil!!!!!

Trout Scout

Posted by Stella (Member # 3119) on :

There is hope AND LOTS OF IT!

Posted by matthewgoss (Member # 3167) on :

I found this old post this morning from February of 2001 and thought I'd post a link and an excerpt:

http://flash.lymenet.org/ubb/Forum1/HTML/000875.html

Well, I know of quite a few people now. Many people who I have referred to my Doc end up getting completely well & going off- those most likely to have this happen are the ones who are caught earlier. However, I also know of a few late Lyme cases which give me a lot of hope. One is a woman who has been totally normal for 15 years now, no symptoms, no abx. She did IV Rocephin (thorugh my Doc!*)!!. Another is a woman who was sick 5 years, completely bedridden the last 3, who did 9 months of IV Rocephin and then a few months of Suprax/Biaxin (I did exactly the same- and am now on S & B too!!! Oh, I hope!*)!!
and has been symptom free & off abx for oh my brain- 3 years now. She is a colleague of my Moms who lives in the Bay Area. We have written and spoken extensively and she was REALLY *really* sick- chronic pain, neuro, the whole basket full of goodies= and now she is 100%. Then there is another woman locally who has been off for 5 years- and now one key member of our group - yup, Charlie, Lorie- thinks she may be all better- with Bactrim- and was set to go off abx this month!!!!!!!! I haven't spoken to her to see if she has done it, but last time I talked to her she was about to!!
ALSO, there are 2 people I know through my friend Gretchen- one who self-treated IV with vet drugs until she was well!!! & pme who did IV through a Doc! Plus, if you keep a watchful eye people pop up here and on the other boards to say they are better and on with life!! They do.
It happens!*! I can dream*)!!!!!!!!! I put my daughter first on my wish list!!!

Dr. J says long-term pediatric Lyme *can* be CURED but he puts kids on IV for long periods of time (if they are not responsive to orals). I believe the same is true of adults- except it is hard to find docs who will treat IV for so long- especially now!!!

Posted by TX Lyme Mom (Member # 3162) on :

Matthew,
Please ask your friends to start writing up their Success Stories so that they are ready to post them as soon as Lou B. creates the new special Forum just for that purpose.

You might ask them to include enough detail so that folks will get an idea of what therapies they think helped them the most, as well as what therapies they would NOT repeat if they had it to do all over again.

Thanks for keeping tally. Your contact list is going to be a great resource when the time comes to tap into it.

Posted by hummingbird (Member # 14642) on :

Gardengirl,
You are really fortunate you had a doctor that tested for Lyme without you mentioning it. Good luck to you!

To everyone else,
it's very heartening to me also to read these success stories. I hope that I'll be able to write one up soon!

Second day of Zithro, we'll see how my stomach does!

------------------
Bright Blessings!
Joy

Posted by Lymetoo (Member # 743) on :

Trout.....YOU'RE IN TROUBLE!

Posted by troutscout (Member # 3121) on :

Trout.....YOU'RE IN TROUBLE! [/QUOTE]

But, TuTU.....it was your hubby that told me about your hot tail.

Posted by Lymetoo (Member # 743) on :

Did you get worried?!

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

Posted by JRWagner (Member # 3229) on :

Hey Trout...not only is it HOT but nice and jiggley too! More bounce to the ounce....

It is BOOT-Y-FUL!!!!

Lucky hubbie...let's clone TuTu's BUTT!

Peace, love and wellness
JRW

Posted by Lymetoo (Member # 743) on :

Now you're BOTH in trouble!

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

Posted by JRWagner (Member # 3229) on :

Who is dis "TROUBLE" broad Loui? Du ya no
her? Lemmi ask Lennie do Loser...nope he dunno neidder...maybe she's new.

PIECE ,love and wellness...heh heh heh!

JrGetMeSome

Posted by TX Lyme Mom (Member # 3162) on :

Hey, you clowns, will you please stop hi-jacking ArtistDi's topic and confine yourselves to the Comedy Hour over in the General Forum.

We need Success Stories here....NOT a bunch of Lyme-brained.......(YOU fill in the blank).

Posted by Houston Lyme Pie (Member # 2578) on :

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!

Posted by richtersl (Member # 2554) on :

Yes, Lyme can be beaten! It can be done!

Yesterday I got confirmation via a computerized bioenergetic scan that there are no more spirochetes swimming around in my body!! I've beaten it!

The computerized bioenergetic scan is similar to an EKG except it takes readings from all your organs via accupuncture points as opposed to spots on your chest to get readings from your heart. There is a catch, though: this test is not sanctioned by the FDA / AMA or whatever body governs these types of tests in the US, but it is sanctioned in Europe and Canada and used by doctors there to back up or confirm diagnoses. Some homeopaths will use this technology to help determine what remedies are needed to treat you.

I wish that there was more of a definitive medical test to back this up. But I have to go with what I have, which is NO MORE LEMON-LYME Disease.

My wish for all of you is to beat this. I hope that I have been able to give someone out there a glimmer of hope by posting this. If I have, please hang on to that hope, remember this post when you're feeling at your worst and know that it can be beaten.

Linda

Posted by troutscout (Member # 3121) on :

Ok, TX MOM....slap me on the wrist.

TS (Bad boy)

Posted by Semper Fi (Member # 3051) on :

Richter, tell us about your journey, what antibiotics or other treatments did you use and time periods....

Posted by kam (Member # 3410) on :

If you are working with an experienced LLMD, one who is a member of ILADS, you'll be in good hands because he will recognize whether or not you need to switch to another abx family, following Rocephin, in order to prevent relapse.

I am new here. I always did read the end of the book first to see if I wanted to read the book.

Is there a site I can go to in order to find a doctor who is a member of ILAD?

I just received a positive WB from IgeneX. I am still looking for a doc to treat me that will take my insurance.

My e-mail is [email protected]

Posted by richtersl (Member # 2554) on :

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 richtersl (edited 12 December 2002).]

Posted by Houston Lyme Pie (Member # 2578) on :

Thank you Linda that was great. I know it took time and effort to re-cap your Lyme story, but there is a need for these stories to be told. I really identify with your observation that being sick has changed the way you look at your life.

And for KAM- I don't know anything about ILADS dr.'s on the West Coast- but there are a bunch of CA Lymies around-

Word of mouth from your local Lymies is the best way to find a REAL LLMD-
I fear your good question is buried here in this long thread-
Have you tried the "Seeking a Doctor" Forum?

Posted by richtersl (Member # 2554) on :

Also, if you can't find a "real" LLMD in your area, perhaps there is someone with an open mind who is willing to learn more about the disease and not have such a big ego problem to prevent them from consulting with an LLMD. I guess you would call that an "LLMD-in-the-making".

Posted by TX Lyme Mom (Member # 3162) on :

KAM,
You won't have trouble finding an ILADS LLMD in Calif., but for those elsewhere, the website for ILADS is: www.ilads.org

(Note: The web address is "org" NOT "com" because ILADS is an IRS 501(c)(3), non-profit educational ORGanization, not a COMmercial web address.)

Posted by noodlydoo (Member # 3273) on :

Ricthers....do you use a llmd locally in PA, or travel?

Thanks,
Noodle

Posted by TX Lyme Mom (Member # 3162) on :

Richters,
I just wanted to say Thanks for taking the time to write such a thorough response. It was very informative.

Often, the extra detail can be very helpful. Your story contains a lot of good info, so I'm glad you provided lots of details.

Besides, we need more "wordy" folks (like Marnie and me) now and then who will take the extra time and make the extra effort to provide plenty of details because it can be instructive. Often, we can glean a lot from some of those little extra details, which can help give us new insights into our own situation. We appreciate your effort.

Posted by richtersl (Member # 2554) on :

Thanks....

I don't like getting too verbose but I do hope that what I wrote will help others. Main thing I wanted to emphasize is that the end result can be recovery.

I was very fortunate in that when I lived in NJ, my MDs wound up being LLMDs and I was treated aggressively once the diagnosis was made. When I moved to Pennsylvania, I never changed doctors. Just wound up making the hour's ride back to NJ. This was easier as they already knew my history.

Linda

[This message has been edited by richtersl (edited 14 December 2002).]

Posted by troutscout (Member # 3121) on :

back on up

Posted by richtersl (Member # 2554) on :

'Tis the season to move this back to the top.

Linda

Posted by robi (Member # 5547) on :

Feelin like I could use some new stories in this post........are there new ones?

I as headed in this direction but I have taken a turn.....hope it is just a detour....

robi

Posted by caat (Member # 2321) on :

there's another thread like this. Some are new, some are older;
http://flash.lymenet.org/ubb/Forum1/HTML/022173.html

and here;
http://flash.lymenet.org/ubb/Forum1/HTML/025992.html
"Nestle
Frequent Contributor
Posts: 61
From: Cincinnati, OH, USA
Registered: Mar 2001
posted 24 June 2004 10:59
--------------------------------------------------------------------------------
Tammy,
I have been treated for Lyme for over 10 years. All of my neuro symptoms are gone. In the 10 years I have been on so many different abx but I think my biggest neuro improvement happened when I was on high doses of flagyl and Biaxin for over a year.

Also, my LLMD said that Lyme is tougher to treat if you took steroids in the past. I was also dxed with MS in the beginning and I, too was placed on steroids at the time.

Karen www.wildernetwork.org "

I'm sure there are others too. This was just a quick search.

Posted by caat (Member # 2321) on :

& here;
http://flash.lymenet.org/ubb/Forum1/HTML/029986.html

Posted by Clarissa (Member # 4715) on :

Hi Fellow Lymies,
It's been a while since I've logged onto this wonderful website. There was a time when I logged onto Lymenet 20 times a day...it was my lifeline.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

With love & hope,

Susan

Posted by beachcomber (Member # 5320) on :

Susan:

Thanks for your post. I am so happy for you.

Posted by pippy (Member # 6005) on :

Hi Folks! (I am a Late Stager getting better)I have not been to Lymenet for a while...I started getting better and interested in life again! I never thought I would.

I have had Lyme undiagnosed (Late Stage) for a long, long time. Typical horror story. I have only been on abx for 4 months and I think I will be a success story. I came here and pleaded for help...never believing I would feel better. Terrible herxing. I was about to end it all every day. I almost did...was obsessed with death.

The biggest change is that I have days where I feel pretty good and I have not had to take anything for pain in a month. Right now I am not feeling as good but its probably a herx. The emotional stuff is better and I am hoping the sleep/brain stuff gets better.
I was one of the worst skeptics and I am now a true believer that no matter how sick and depressed Lyme can make a person, YOU CAN BEAT THIS!!!
I am truly grateful to God, my family (they finally came around), people here at Lymenet, and my fantastic LLMD! THERE IS HOPE DON'T GIVE UP!

Posted by jwf (Member # 6292) on :

My story started on a hot August day,
2002, in Virginia, near Smith Mtn. Lake.
While looking at farmland, my wife and I
were covered by nymph dog tics, not deer
ticks. We removed them within 5 hours,
and got what we thought was the flu about
5 days later. No bullseye rash.
At that time I thought dog ticks didn't
carry Lyme and no rash was proof we were
OK. Today, that's disinformation.
Six months later, we both began to start
itching, with stabbing pain over most of
our bodies. Then we began to have memory
loss- brain fog, and some speech difficulty.
Arthritic symptoms followed, especially the
stiff neck and sore feet. I began to
have rashes and red bumps, and noticed
the blue and red fibers, along with black
specks- common to Morgellon sufferers.
After finding out that a good percentage
of the Morgellon folks have Lyme, my wife
and I were both tested and received positive
results, now 1 1/2 years after infection.
Four weeks of doxycycline just took the edge
off our symptoms and the candida blossomed.
I've been a nutritionist for years and de-
cided to try healing ourselves with the
most potent herbs we could find.
To keep it short, this is what we feel
helped us recover.
Cat's Claw- both TOA free and the standard
with TOA's
Garlic-- the Kyolic formulas are good-
we recommend the Immune 103 formula.
Olive Leaf Extract-- combats many of the
mycoplasmas vectored by ticks
Sarsaparilla- combats spirochetes
Silver- general antibiotic, we prefer
the ionic form from WaterOz
Pau d'Arco, Oregano extract, and the
Olive Leaf Extract for candida that
usually thrives with reduced immune
function of Lymies
Seven Forest formulas to combat spiro-
chetes-- these are Chineese herbs used
to fight Leptospirosis, a spirochete.
(No. 6 & 18)
Lauricidin for immune system stimulation
and anti-bacterial
Other supplements for detox too numerous
to mention but important for recovery
Now, just 2 years and four months after
contracting Lyme disease we are free of
symptoms- both Lyme and Morgellons.
Anecdotal maybe, but we feel this herbal
route for healing can work for many.
We had an advantage of not having any
known co-infections.

Posted by Kathy Boss (Member # 3062) on :

With out a long story,

Yes....I am well.

I started here Sep of 2002....Got a bunch of information and it saved my life.

How can I ever say thank you enough to all of you.

My life, my eyesight, seeing my children grow.....I owe it all to those that helped me, supported me & cheered me on.

Yes, life does go on, yes it can be better, yes build your strength from with in.

God bless to all.

Kathy

Posted by Semper Fi (Member # 3051) on :

I think I'm healed, time will tell. I just got back from playing two hours of handball, couple of drinks, dinner, with my beautiful wife and I feel great. My last Igenex was negative and i feel 100%. I have been on the Marshall protocol for 7 months. My wife has been on it for 7 weeks and is finally feeling good. She worked out tonight, had a drink and feels good. she is on phase I. God is good and has answered our prayers. Keep the faith and you can beat this.......God bless and Merry Christmas.

Posted by on :