#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.

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.

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.

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).]

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

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

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?

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!

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.

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.

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!

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?

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

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."

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.

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

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!!

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

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

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!!!

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.

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!

It is BOOT-Y-FUL!!!!

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

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

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!

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

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.

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

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-