Has anybody been *cured* from Lyme and had residual problems, even sporatic ones? I suspect the answer is yes, particuarly when it involved neurological problems.

If there are any people around in this situation, It would be nice to here from them as there seems to be a distinct tendency on the BBS for people looking for a cure with elimination of symptoms.

Some of us may not be that lucky and my be stuck with residual problems. But here is the big question.

What experiences do people have to help determine if the infection is causing ongoing progressive damage or has been arrested.

Here are a few ideas on the subject.

What effect does ABX have on the symptoms now and how long does it take to notice those effects

Is there a cycle to good and bad days. Or does it just come and go as with many chronic diseases/ailments.

Did the symtoms, after *cure* still progressively get worse and them better, again in any cycle or pattern.

Were there any abnormal diagnostic tests, blood, CSF etc, (not lyme tests) which went back to normal after treatment but stil had persisting symptoms.

Any other observations to differentiate between *cured* residual symtoms vs ongoing symtoms.

There is a lot of discusion in both medical camps on the effect of long term ABX. Both are working on valid principles.
The short term guys basically are saing that the short term treatment in MOST cases knocks the bateria load down to a level that can be handled by the body. Some times it works sometimes it does not (AKA treatment failure and relapse, it hapens all the time with other treatments). The remainig problems they say are permanent damage that will never go away.

On the other hand the long term ABX people work with a lot of relapsed patients and also have much more clinical experience than the short term guys. I personally believe that the long term advocates are correct but I also have to conceede that the mainstream medical people do have some valid arguments.

With this post I hope that someone will shed some light on their past exeperience on the residual damage issue from *personal experience* rather than a rehash of the indaequacy of testing etc.

There are a lot of things worse than lyme and which have a definate end point (ie death), with information from kind forum members who have been through the whole Lyme cycle, I think it will help some of the Lymies such as me to either get on with things, despite the hardships or aggresively seek further treatment.

Thanks in advance for any replies.

I live in rainy Florida. We have snowbird neighbors from Ct. She "had" lyme...bulls-eye, treated with Doxy and "cured" a few years ago. Then had a bout with parvo virus. Parvo runs it's course and has subsided...but she does have RA.

Her husband has, most definitely, the beginning of Parkinson's.

They have a hot tub they use almost every night and they do play golf and eat very healthy. This, I believe, is helping.

Just an observation worth thinking about and wondering.

I would suspect those who believed they were cured of Lyme would not, down the road, make the connection that the RA symptoms, etc. are a residual effect.

My sis has had nonstop abx., all the big guns, several repeated doses and multiple supplements for 3 years. She is now officially dx'd "autoimmune" and is taking an extremely $$$ drug to block one inflammatory cytokine. Which helps...to a degree. She can now exercise and promises me she is taking her Mg malate with B6.

We are all fighting off disease causing bugs and viruses every second every day. As we get older, we don't make as much COQ10, growth hormones, our bones get brittle, the thymus gland gets smaller...in other words...according to nature none of us are going to live forever anyway, but I do believe there are ways to be healthier, longer.

Eat healthy. Exercise some. Have fun. Enjoy and thank God for every day.

I'm one of those people who've been dx'd with neuro Lyme and treated long term, but still has sx.

My case became complex enough that I have not one, but two LLMDs who oversee my care; one locally, who eventually referred me to the LLMD who is the author of our diagnostic and treatment guidelines. I am also under the care of a cardiologist, a neurologist, and an endocrinologist. One of my LLMDs oversees all of my treatment with these other specialists.

i believe the reason my case is difficult to treat at this point is that my doctors are trying to sort out exactly what you are asking about: what sx are from active disease, and what is from permanent damage or other sources?

I have undergone very aggressive abx therapy for fifteen months, followed by many tests, a detox regimen, and plans for further treatment.

I am currently PCR positive for Lyme and Mycoplasma fermentans, and have been clinically diagnosed as having Ehrlichia and Babesia coinfections.

From my own experience, I have concluded that it is often quite difficult to sort out which sx are caused by active disease, which are caused by permanent damage, and which are caused by a buildup of neurotoxins or yeast.

With chronic neuro Lyme, this is not always an easy puzzle to solve. It involves taking an holistic approach to treatment, which may include long term abx, physical therapy, a detox regimen, yeast control, aggressive vitamin and electrolyte supplements, and often hormone therapy and/or treatment for autoimmune disorders triggered by Lyme, among other things.

Determining which of these treatments are necessary, and which are working, often require extensive diagnostic testing.

It deeply frustrates me that so many mainstream doctors still maintain that lyme is a disease that is easily diagosed, rare, and easily treated.

It is my hope and my prayer that my case, along with others, will help to educate doctors and our communities about the complexities of this disease and the dire need to research how to better diagnose and treat it.

I hope you get the answers you are seeking.

M.M.

P.S. Marnie posted while i was writing, and I have to say I agree with everything she said.

There are many variables that can contribute to the severity of illnes if infected with Lyme, but a healthy lifestyle and a positive attitude are a must!!

My symptoms are mainly neuro. Traced infection back to rash and cranial nerve problems in 1995, Nobody then knew what it was.

Did you have any diagniostic imaging done as part of the ongoing monitoring? Also did they ever test for a protien 14-3-3, that was originally for mad cow disease but also present with other destructive brain diseases.

There has been talk of ordering a SPECT lately, but has not yet been done.

As far as the protein 14-3-3...that is something I don't recall hearing about before, so I doubt I've had this test.

I have strabge reaction when herxing....many of my symptoms go away. I get the flu like stuff, but.....my head clears AND my MCS goes away!!! However, it is the after math that kills me...the released toxins bring on the things I hate.

By the way....real garlic is the other answer for me.

The ones who have "continuing problems" that I know of, have always had some titers come back positive, and occasional PCR's when tested on a regular basis.

The ones who have drop leg, or other physical (but neurological) problems seemed to recover fairly well, with slight symptoms ongoing, no major "swings", but those I dont know if they have had ongoing testing to see if it ever comes back positive or not.

It would seem to me that complete recovery is less likely with "hard" neuro problems, ie motor problems. But I just don't know, thats why I asking. Any comments are helpful.

My symptoms have been getting worse. October marks one year of various oral abx combos along with magnesium, probiotics (lots of the good kind), B6, Folic Acid, Dr. Burrascano's B12, B6, B1 injection recipie once a week (just started that recently), Diflucan as directed by my LLMD, detox baths, etc.

Since around the end of April Minocycline has been one of the abx as there's no question I have neuro lyme.

We ran tests, at one of the good labs, to check progress on Lyme WB, Babs, and Bart.

The Lyme has gone down from my initial test last year. Babs negative, and Bart that had been positive now negative (was never tested for Babs at a good lab previously).

My primary doctor, working with my LLMD, ran some screening tests. Now my sedimetation rate is high. He's running the test again to be sure, plus some others just in case the sed rate is accurate.

My main concern is that this time, and the last time I had blood drawn, the needle clogged. This has never happened to me ever in my life.

So, have I made my situation worse with the abx? Or is the Lyme progressing anyway and now teasing some sort of autoimmune response?

Plus, my headaches have gotten very severe. None of my headache meds touch them. The fatigue and pain is as bad as before starting the abx. For a while there I thought I was feeling a little better.

Herxing continues about every three or four weeks. Occasional Lyme rashes continue to appear also.

An extension of the question of damage vs continuing infection, is the question of whether autoimmune illness triggered by Lyme continues w/the resolution of the Lyme, or whether a "cure" of the Lyme resolves the autoimmune problems.

My daughter (and to some extent, myself) have lots of abnormal autoimmune labs, including biopsies. After more than two years of antibiotics, I feel it is prudent to treat the "lupus/arthritis" stuff and check for damage from autoimmunity, and not rely just on abx. Time will tell!

Whether problems result from continuing Lyme or residual damage (autoimmune, neuro, whatever) I think it is easier to cultivate an attitude that helps deal with illness that is CHRONIC. In other words, cultivating acceptance of what can't be changed (at least soon, or easily) and doing whatever positive and constructive thngs we can do for ourselves, including exercise (if we can) and diet, staying involved in activities if we can and so on. I don't mean to sound so pollyana-ish, it's just that this seeems to have helped us some. Hoping for cure gets stressful...it is hard to deal with so much uncertainty!

A couple of other things. I liked your list of experiences that might differentiate damage vs infection. I have a lot of the herx patterns etc, that suggest continuing infection, but my daughter doesn't. The LLMD and I took her off abx in April - she did one month in August, and is off again. Still has symptoms (bursitis, Reynaud's, migrating pain) and abnormal autoimmune labs (w/some improvements) but is living life fully and is not experiencing any worsening, still gradually improving. Does a lot of exercise. I'm not in a hurry to put her back on.

For myself, on the other hand, just four missed doses of abx are a DISASTER and I start twitching and shaking, tongue gets thick, and fingers feel clumsy, brain gets foggy, paresthesias burn more etc. I figure this is a definite sign of continuing infection. I amost feel like saying "hello, I know you're there" when the buggers are playing with my nerves. I may never be able to get off abx it seems: I know a lot of people are feeling that. Arghhhh...

Paresthesias are my main symptom, now just mainly hands and lower arms (no more burning in legs or face, so progress!). These sensations ebb and flow, some days are terrible, others better, so I wonder if residual damage would cause such varied intensity, Seems like it wouldn't be so dynamic.

The fact that labs can't help us evaluate a possible "cure," and that so many people relapse off abx, makes this whole thing so troublesome. The lack of open-mindedness with other specialists who we might want to consult is a terrible obstacle, too. We're really on our own a lot.

I believe lyme is not unlike that other nasty spriochetal disease...syphylis. It becomes generational...passed down from one generation to the next.

I have been treated going on four years.
If antibiotics are stopped the relapse is swift and brutal.

I would like to stop and go on a kind of maintenance program. Haven't found a doc who's interested in that, though I hear there are those who do it. (1 zith two or three x a week)

When a person is on abx, their own immune system is put on hold while the abx work in its place. When a person stops the abx, their immune is jump started (if at all) just like a stalled car. There can be some jerking and coughing. I feel that to truly know if you are relapsing or not, you need to stay off the abx long enough to know whether it is the immune system restarting or the Lyme still active.

Also, the abx stay in your system for a few weeks. Ofcourse at a weakened level. When the immune systems kicks in, it doesn't recognize the difference between live or dead spirochetes and goes on an attack.

I also strongly suggest the use of immunity boosters to help the body do its job. It makes the transition easier.

Again, just another point of view.

frenchbraid

Just a thought.
Anyone else with such great thoughts.

As Don...www.cassia.org and Valletta discovered...3 months to get over the "hump". This is a scary time as you will feel bad when your OWN immune kicks in...just as you do when fighting a horrible cold or the flu. There WILL be a "doubting Thomas time".

And yes...ABSOLUTELY...the more exercise you can do the faster the recovery.

Finally, if what Dr. Weil said on Larry King's show in May, 2003 is correct...that Lion's mane MUSHROOM can repair the myelin sheath (insulation around the nerves) this is AMAZING. (I believe it goes after the infection that is destroying the sheath and the body IS CAPABLE OF HEALING ITSELF.)

I've read and heard the theory that our
"swift and brutal" relapses (perfect adjectives) may be due to our immune system jump starting. I also realize that residual abx are still in our bodies after a few missed doses, so it's hard to believe the bacteria could rise up and rebel so quickly! However, I can't deny the fact that I get very sick after just a couple of days. If this were truly an immune system reaction, it seems that we would get fluish symptoms and such,but not a return of our very worst Lyme symptoms, which seem so clearly to be caused by bugs-in-residence.I would love to try to get off and get over the hump, but I would be truly incapacitated- have too much to do for my kids!

Maybe Woody's idea of maintenance with a few doses/week would be a good training wheels situation. This regimen could relieve us of the abx problems, keep the bugs down enough, and maybe give the immune system a chance to get going again more gently.
Does anyone have a doc who does this?

I've been doing this a little lately w/my amox., while waiting for new abx through mail order. I've noticed that if I skip the meds, I feel terrible. I push it as far as I can (2-3 days) but then when I restart, I seem to have a couple of days of NO symptoms at all. I wonder if the bugs come out on the battlefield where the abx can see them and get them in target range.

Granted, abx are needed because our immune systems have been so beat up that they can no longer fight, but after the germ load has been reduced to a fighting level, I feel that the body should get a chance to do its job.

Again, immunity boosters are an excellent source to help that happen. Especially when an immune system has been so hampered from the Lyme and abx.

I agree with Marnie about the many other "back-up" self-preservation routes. For example, Omega 3 & 6 do wonders for damaged CNS's. I am also big on the Magnesium theory. VERY big!

Again, this is just my opinion.

frenchbraid

I did great for 4 months ...very little sysmtoms...then my babs came back very strong..mostly with the headaches, dizziness, night sweats, brain fog etc. I don't think any of my lyme symtoms came back, I thihnk my immune system DID keep them in check. I did go back on mepron /;biaxin where I am now trying to get rid of babs.

Interesting note though. I never, never, ever tested positive in all the 12 years of having lyme , or babesia on either a western blot or pcr...just treated the sysmotms and herxed in all the right places....

however, after 4 months OFF OF abx, we did pcr and western blots and my immune system HAD kicked in enough to finally show postive on both tests for lyme and babesia! I found that amazing! so all those years that lyme had beat down my immune system it was unable to muster up enough response to show positvie antibodies..but after the time of immune building etc..for over a year, my immune system was finally stronger nd showed postive...

I find that amazing. I have 2 more cycles of mepron left and then I'm done dn hope I can go back off again. I feel good most days..some left over foggy head, and I defintitely do the mepron herx on weeks 4 and 8 etc...so I know I still have some babs left. But I can work etc...and function well.

I do think building my immune system with acumpuncture, herbs and herbal teas made all the difference, along with the abx....the combo along with exercise of walkling..

I had elevated liver bloods the first 2 Fall seasons (only) that I was on abx...I take abx year round and it's only a Fall manifestation...it was NOT due to the abx but rather the lyme messing up my liver cause my immune system is compromised by allergy in the Fall.

My "sciatica"(really demyelinization of spinal cord) reversed and disappeared after two months on doxy...it's not recurred.

After not being able to sleep on my left shoulder since 1990, I can sleep on it ALL night with no problem. ABX fixed that too.

I haven't experienced that profound malaise I had before abx either.

I was late stage untreated Lyme- best guess about 27 years. I had every symptom at one time or another EXCEPT seizures (including
not being able to walk at all for 3 months in 1993).

I was diagnosed with Lupus - then suspected Sarcoidosis, MS, autoimmune hemolytic anemia,
Complex autoimmune disorder, then they wanted my 3rd syphilis test (all were neg) because they suspected late stage untreated syphilis becuase of a 10 year bout with Uveitis.

I've been thru the medical mill.

I tested positive by PCR for Lyme and positive for Babesia by Western blot in Oct. 2002. I had the RBC profile identical to dogs with Babesia - excellerated RBC production, not enough of them, and anemia.
During Babesia flares I had RBC fragments, high WBC, and lymphopenia (not enough Lymphocytes).

I've had 2 rounds of abx pulsed- once for 50 days, another for 20 days (DOxy/plaq) and I
went thru the S. African anti-Malaria treatment (b-artemether) in between the 2 rounds of abx.

The first round I herxed constantly (within 12 hrs of the first dose I thought I was having a stroke- then chills fever, etc), the second round after the b-arthmether was much less herxing.

I am 98% symptom free of all Lyme/Babs symptoms (including 100% of what I thought were chemical, food and seasonal allergies )and have been off all abx since mid-Feb 2003.
(intermittant tinnitis & Uveitis are hanging on - but I'm clear of both at the moment).

I can't answer your questions as to why some respond to short term abx (I guess I qualify as short term) and others do not, nor do they respond to long term abx.

I also think I'll have to live with a small (Lyme) bacterial load the rest of my life - just as other do with the cold sore virus.
I don't expect to "get it all" because there's really no way to KNOW if you got it all.

I just don't think everyones body responds to the disease - or to the treatment the same way. Probably tissue type has something to do with it.

I have to say thought that the alternative therpies (especially Bee Venom therapy) I've used in the past, and the high anti-oxidants
I use have helped.

If I have the $$ this fall I'll have Igenex do a WB and IF ( I say IF) I have a positive IgG and Neg IgM for Lyme and am symptom free - Then I'll consider that GOOD and a sign my immune system has made the proper IgG
antibodies against Lyme.

There's just no ONE answer to this disease -
which is why so may treatments fail (in my opinion of course). I think the treatment has to be tailored to the individual.

Barb

fortunitly for me, I have never had any problems getting my needs met. IV Drugs,IVIG-which is 3grand a pop! alternative treatments covered by insurance, all doctors who I deal with pretty understanding

Case in point- my allergist gave me my Bi-cillin G shots, so I wouldn't have to try to give them myself or travel 1-2hrs for the LLMD to do it!

Pretty heplful doc's I'm very thankful!

But I'm still not well, CDC positives still!!

My immune system is largely to blame, IgG sub class deficienties-that is partly because of on-going infection. BUT, the IgA being low-that's genetic-per a immunnologist that believes *STRONGLY* in chronic Lyme

No amount of alternatives will cure that issue-enhance and support-YES,YES, but go without IVIG-and I get every other oppertunitistic infection there is!

I don't hear about alot of people checking out the immune system to see if there are actual functioning problems there

Yes, Lyme does damage and so can long-term antiboitics-but ABX-does not do it to everyone-even if using or not using everything in the book to control yeast, ect

And not everyone is being treated, or even tested for viruses and other oppertunistic infections-such as mycoplasmas and clymamdias, other rickessitti pathogens

This statement may not win me popularity votes-but in the early days of your Lyme treatment, especially if you live in a NON-epidemic area-your treatment may have not been long enough, or of a strong enough level to completely eradicate the bacteria, and those that are left become increasingly more resistant to treatment of any sort, as well as your own immune system defenses
(This can be the case anyway, it's a new disease and no one really knows for sure how to cure it! )

Henceforth-you are now-very possiably "chronic"

What chronic is-varies according to each person and their "pre-morbid issues", and what treatments they have recieved in the past-such as immuno-supressent drugs, like steriods and such

Cured is all pathogen levels normal-no sx

But, and a BIG BUT HERE-can you REALLY cure all neurological damage? Nerves rebuild themshelves at about 1 inch of tissue a yr.

So, if your MRI, shows large white matter hyperintensities( not the smaller punctate lesions-you know-the ones that are missed if not ran on a weighted 2T proton) are the antibotics really going to "cure" those lesions? The body will repair nerve damage over time-but not in a 6-8 mo's antibotics course.

David, that is why I follow both sides too, I know what I'm living with-but if this was the end all cure for Lyme-after 5 yrs, and addressing a aggressive alternative program-I would be well

It worked when I had EBV in 1991-current treatment protocols did the trick!Alternatives worked wonders!

The big "political" issues at hand-insurance companies not wanting to pay to get your needs met-health-wise

And the BIGGIE-In the 50's medicine did a about turn, instead of focusing on infectious agents being a cause of many chronic neuro-degenerative diseases, Lifestyle and genetics became the big reason for these and other illnesses.

Well, of course-antibotics could cure everything infectious!! (Very early pharma sales pitch! )

And the medical profession (Especially the researchers-don't want to admit to incorrect judgement )

My symptoms have been getting worse.

Plus, my headaches have gotten very severe. None of my headache meds touch them. The fatigue and pain is as bad as before starting the abx. For a while there I thought I was feeling a little better.

Herxing continues about every three or four weeks. Occasional Lyme rashes continue to appear also.

This is a very frustrating disease![/B][/QUOTE]

Enhanced susceptibility to peroxidation also occurred very early during Mg deficiency. It may be hypothesized that disturbances in Mg status of short duration could have cellular effects with various deleterious consequences.
http:// www.aegis.com/
pubs/aidsline/
2000/mar/A0030759.html

Magnesium deficiency in experimental animals leads to inflammation, exacerbated immune stress response and a decrease of specific immune response. It also results in a significant increase in free radical species and subsequent tissue injury. An accelerated thymus involution was observed in Mg-deficient rats in relation to enhanced apoptosis and enhanced susceptibility to oxidative stress.
.
PMID: 11781153

Fast...you betcha!

Mycoplasms are teeny tiny bacteria. They can PRODUCE H2O2 and Bb is H2O2 resistant. To break down acidic H2O2 takes catalase, an enzyme...and guess what controls it? Yup.

Mg low, Ca goes into the cells (not good). NO (nitric oxide levels rise). This SAVES the cells. Babesia yells, "Yipee!

"One of the mechanisms of parasite-related anemia in such children may be through the adverse hematologic effects of parasite-induced NO production."

PMID: 10463675

Got to restore the Mg!!!

Re: rashes:

Neckermann G, Bavandi A, Meingassner JG
Br J Dermatol. 2000;142:669-679
"Magnesium deficiency in hairless rats results in a transient erythematous rash within several days, the pathogenetic mechanisms of which are not yet well defined. However, the extremely pruritic rash closely mimics the acute clinical features of atopic dermatitis."

After a mosquito bite...redness, heat, swelling, itching. Signs of inflammation (cytokines). Itching due to histamine triggered by Ca going into the cells when Mg is not avail.

Of course, it is not easy to determine at the time what is permanent. I thought my knees had turned to concrete and would never work again, but doxy and biaxin brought them back. After a year of this combination, it stopped working. Joint problems back and now I have Baker's cysts behind both knees.

While I was taking this combo for joints, my back kept getting worse because these drugs didn't work for every symptom. My back is now permanently damaged to the point that it shows up on MRI's etc.

I find it puzzling that a drug doesn't work the same for all symptoms in one person.

About a year after diagnosis, I was concerned that I wasn't well after all that treatment. Then I had to stop treatment for 2 months for another test. That is when the permanent eye damage was set in motion. So, the treatment may not be curative but it is probably holding back even worse symptoms. I thought it wasn't doing anything, until I stopped!!!!!

I totally agree with that.

I think someday we will find the right combinations of drugs which will work faster for some people- people who do not have babesiosis for instance. The bacteria is a lot like h. pylori which takes a strong combination and has strains which are antibiotic resistant.

I've met a quite a few people who feel they have been cured- some have been in remission for years. All of them have different stories and different protocals they've used. All of them say they have some damage from the infection, except a couple who were treated right away.

I think even with drugs and combinations of drugs which are not terribly effective, if you hammer away at it for long enough you will make a good dent at least. But- I think we are not hitting on the right combinations and timings. And our tests for co-infections are horrid.

The relapses I've had when I stopped antibiotics were very quick at first- 2 days, then after months of abx- 5 days, then 1 week. I could tell it was a relapse because it was obvious menengitis and was getting worse.

My herxes have lessened in the past 2 years. I just started rocephin 10 days ago and I can tell this is a very strong drug. However, my herxes are not too bad and I think that's a good sighn. I think the spirochetal load has gone way down.

If I ever do get rid of active infection I think I'll have a good deal of damage left over which may not heal- short term memory loss, bad arthritis and myalgia possibly caused by nerve damage, both bone loss and bone spurs and a weakened heart. I'm just grateful my comprehesion came back. I hope I can get to the point where I'm not afraid of relapsing into menengitis or progressing into encephalitis.

anyway-my experience leads me to believe abx can knock it down to a level where our immune system and supplements can keep it under control, but i doubt if we're ever gonna get every last bug. if we get stressed emotionally or physically or stop taking good care of ourselves, i think its(the lyme)just waiting to come out and get us again.

it was interesting to read that pcr's have gone to positive to negative at the same time symptoms decreased. i'm going to look into this. i pretty much gave up on using tests-considering the test situation.

GOOD THREAD!

Good topic.

I'll try to add my two cents later.

I recently got of abx for just a week and prior to that I was feeling great. After a few days just a few days off abx terrible headaches and head pressure, gi problems, sleeping problems, chest pains again, etc. I never used to get headaches my whole life I think I can count the # of headaches I have had on my hands.

I agree with Lou "I think you can have permanent damage at the same time you have continuing infection that still needs treatment (to prevent further permanent damage)." while the abx might not be an end all cure they do slow the progression down.