Forgive what may be a very naive question. I was just diagnosed with Lyme (haven't seen the test results yet so don't have all the band detail, but it is an IgM not an IgG elevation).
It is unclear whether this is a fresh infection or an old one. On one hand I've had strange symptoms on and off for 18 months (since returning from a trip to Cambodia where I got some strange bug bites) of tingling/buzzing in my hands and feet. Saw a neurologist and he "tested" for Lyme which came back negative(now I know better - should have seen a specialist). On the other hand I noticed a rash 4 weeks ago and got tested by a specialist who this time came up with the positive diagnosis. So it's hard to know when the infection occurred - or whether I was infected twice.
In any case - the only symptoms I've ever really had, I think, is the "buzzing." Which is annoying but frankly I've come to live with it. Now I'm on an aggressive course of antibiotics (cefdinir, zythro, and one other I haven't started yet) and my symptoms are much WORSE (herzing I guess). Buzzing, plus EXHAUSTION. Plus sickness.
So my question is: is this worth it? ie., I am all for going for 3 months of treatment & suffering the effects if this is ridding my system of the infection and I will "be better." But if it's all about managing my symptoms, well, to be honest, I felt better BEFORE the antibiotics.
Which is it?
Your responses much appreciated.
Posts: 2 | From New York | Registered: Aug 2008
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If you want to get WELL, then you need to continue. Herxing is a necessary evil!
You DON'T want this to become chronic, that's for sure.... so knock it out NOW!
Be sure to read Dr C's Western Blot Explanation, found in Medical Questions... 4th post.
This is an excerpt:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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adamm
Unregistered
posted
They kill bacteria, and some manage symptoms as well.
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Vermont_Lymie
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Member # 9780
posted
quote:Originally posted by Lymetoo: Hi there!!! Welcome!
If you want to get WELL, then you need to continue. Herxing is a necessary evil!
You DON'T want this to become chronic, that's for sure.... so knock it out NOW!
Totally agree with Lymetoo. Starting treatment can be bumpy and rough, but you have a chance to get well.
The risk with not treating your infection is that it could over time become much worse. Lyme disease is progressive for a significant number of those infected, and the endpoints are serious -- including cardiac and neurological disease.
Treating it now while your symptoms are relatively mild will give you the chance to get better and avoid truly awful and debilitating symptoms.
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lymielauren28
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Member # 13742
posted
Hey Cambodia,
I completely agree with Too as well. I can promise you that Lyme disease doesn't stay "manageable" forever. It's a progressive disease if left untreated.
For the first year and a half I was sick I had manageable symptoms - and I didn't take them seriously - and that was a huge mistake on my part.
After a year and a half, I got a stomach virus...it weakened my immune system just enough to let the Lyme take over, and then I spent the next year so sick I thought I would die. Treat it now!
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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posted
Thanks for these responses. Here's my key question: what constitutes starting treatment "relatively early"?
In the scenario where I was exposed 20 months ago - is that still early?
Can antibiotics still be effective?
And what determines the "end point" of when to stop taking the antibiotics - are doctors purely guided by your clinical symptoms, so that when you feel better you stop the protocol?
Posts: 2 | From New York | Registered: Aug 2008
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adamm
Unregistered
posted
I actually was told by my previous LLMD that average Lyme patient
goes undiagnosed for 7 years, so given the generally decent
rates of LLMD's, I'd say you shouldn't have too much to worry
Those are really good questions and I think we all struggle especially with....when do you stop treatment (with antibiotics).
Unfortunately, we all have different ways in which the lyme invades and presents and so it is so impossible to make blanket statements.
For example, to say "treat until symptom free for several months" is not realistic for some people.
There is always the chance of co morbidity (different bugs, different bites).
I think herxing needs to be put in perspective in relation to actual symptoms but then there is also always the invisible danger of the way it may creep up on you while you are living your life. Lyme is trickier than anything, I think.
There are no easy answers. Three months of treatment I would think is definitely worth it (which sounds like what you are saying is a long treatment?). But years of treatment might be necessary in some severe cases. And even then, only to beat it back....not necessarily to be "cured". For instance I was on antibiotics for a couple of years and I am still no where near the person I was before this hit to the extent that it did.
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
quote:Originally posted by cambodia: Thanks for these responses. Here's my key question: what constitutes starting treatment "relatively early"?
In the scenario where I was exposed 20 months ago - is that still early?
Can antibiotics still be effective?
And what determines the "end point" of when to stop taking the antibiotics - are doctors purely guided by your clinical symptoms, so that when you feel better you stop the protocol?
To answer your second and third questions:
Yes, in my experience (and my doctor's), abx can still be effective, no doubt about it.
As for the end of abx treatment; I have heard that many ll doctors end treatment 3 months after the end of symptoms. Hope you get to that point soon!
[ 24. August 2008, 09:59 PM: Message edited by: Vermont_Lymie ]
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
3 months is not long enough to treat lyme. It requires many different antibiotic combinations/rotations over a period of time.
It is a very complex infection / set of infections. There are ways to minimize the risks, especially with liver support, etc.
====================================
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed here do to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
*****
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- FULL ARTICLE AT LINK ABOVE.
(Please read the entire article. Discussions and replies from here on will be based upon your having this information. It will clear up a lot of questions.)
==================== ====================
AFTER reading the Savely article (link above) this will make more sense
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
IV. WHAT'S WRONG WITH ``CURRENT GUIDELINES FOR TREATMENT'' OF NEUROBORRELIOSIS? First, read the fine print.
It is interesting to note that recommendations for treatment in the medical literature may carry provisos in small print that can easily be overlooked but are instrumental to understanding how important individualization of therapy is at the current time.
For instance, in the past and in small print Dr. Alan Steere has written, ``treatment failures have occurred in all these regimens, and retreatment may be necessary; the duration of therapy is based on clinical response, and the appropriate duration of therapy with late neurological abnormalities may be longer than two weeks.''
A more recent article written by Rahn and Malawista states ``these guidelines are to be modified by new findings. It should always be applied with close attention to the clinical course of individual patients.''
Dr. Katzel surveyed several Lyme Borreliosis conferences, including international ones. He finds a trend towards the use of antibiotics for longer periods than previously described and lack of standardization of care worldwide.
50% of physicians responding considered using antibiotics for time periods greater than one year in symptomatic seropositive patients, with almost as many extending therapy up to one and a half years when necessary.
THE CASE FOR PERSISTENT INFECTION
Studies have shown that Lyme bacteria can be an intracellular pathogen and may evade the normal host immune response. The causative spirochete, B. burgdorferi, for instance, may persist within fibroblasts and survive at least 14 days of exposure to ceftriaxone.
In addition, B. burgdorferi has been cultured from CSF more than a half year after a standard regimen of IV antibiotics, according to Preac-Mursic. Logigian and Steere looked at patients with chronic neuroborreliosis, evaluating them six months after two weeks of IV ceftriaxone.
Over one-half of the patients had already been treated with therapy that was thought appropriate for their stage of illness, yet the illness progressed. The majority of patients studied had subacute encephalopathy and polyneuropathy.
Most had persistent fatigue, and almost one-half had headaches. One-third of these patients had to stop working or had to go part-time, underscoring the disability that may be seen with Lyme disease on an individual and societal level.
After therapy, two-thirds of patients improved markedly, but seldom completely. Twenty-two percent improved but then relapsed, and fifteen percent had no change in their condition.
This study suggests that additional antibiotics greatly helped the majority with neuroborreliosis but they were insufficient to cause long lasting remission in those patients who subsequently relapsed.
Persistent residual or irreversible disease may explain the fifteen percent who had no change in their condition.
For those clinicians who have had extensive experience with chronic neuroborreliosis, more recent recommendations suggesting that a regime of only 20 to 28 days or even 6 weeks of intravenous antibiotics is sufficient for cure proved contrary to clinical experience.
That brief dosing does not appear to prevent relapse or improve long-term outcome dramatically in many cases.
Perhaps, as recent information has instructed, that is because the immune system does not begin to repair itself until the beginning of the fourth month of antibiotic treatment.
A trial of prolonged use of oral antibiotics seems more reasonable in many cases, given these circumstances.
Antibiotics used for chronic neuroborreliosis should be able to penetrate the blood-brain barrier, express activity against intracellular organisms, and assure good intraphagocytic penetration.
It is anticipated that the microbe during late disease has achieved maximal adaptation to its host environment. Also, because of the long generation time of the organism, lengthier therapy is warranted.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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