Like so many on this board, I am a chronic lyme patient who has been through the array of oral and IV abx treatment and alternative treatments for lyme and coinfections. I no longer feel "poisoned" by the disease and all of my tests in this area are now normal. However, I, like so many on this board, still suffer from all-over muscle pain(burning)(tootache-like throbbing) and stiffness and soreness (mainly bad in the legs impacting stamina). I'm pleased to report my fatigue is much better.
So...here's my question:
Do people get the consensus from their LLMDS/Neurologists/Rheumatolgists that this post-treatment issue is mainly from inflammation caused by the immune system attacking the muscle tissue OR is it mainly from the toxins left behind in the muscle and joint tissue....If it's the former then it would seem that something like IVIG might help many on this board (I know there have been a number of posts about this)..
Does anyone know if science has determined if this post-treatment state is inflammation from the toxins or the immune system attacking the muscle/joints???
Thanks so much for any replies.....It just seems like there should be some consensus/determination about this at this stage....
Thanks!!
Oh, if anyone has solved this, please please post about it for everyone....
Posted by cjnelson (Member # 12928) on :
I would say if you are still symptomatic you still are having issues from the root. You say all your tests are normal now - which tests and by/from what lab?
Posted by cjnelson (Member # 12928) on :
have you had your Vit D and 1,25 D levels checked? It may also be other issues...
Posted by Keebler (Member # 12673) on :
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You asked:
a. " post-treatment issue is mainly from inflammation caused by the immune system attacking the muscle tissue OR
b. is it mainly from the toxins left behind in the muscle and joint tissue. "
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I think it's active chronic infection that has not been fully treated. The burning of your muscles can be that the nerves are still infected. And, lyme may not be the only infection, so be sure to explore further.
May 2008 Volume 39 Number 5 LABMEDICINE www.labmedicine.com - American Society for Clinical Pathology
CHRONIC BACTERIAL AND VIRAL INFECTIONS IN NEURODEGENERATIVE AND NEUROBEHAVIORAL DISEASES
- by Garth Nicolson, Ph.D.
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In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
- at link.
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Posted by 'Kete-tracker (Member # 17189) on :
The most likely scenario is continued active infection or immune response TO it.
If it happens, or is worst, primarily first thing in the morning, it's your immune response (to leftover neuro damage... OR Lyme). If it hurts at various times during the day, it's likely active infection. Probably Lyme infection, of some form, if it seems to cycle in intensity over a 28 day period.
No-one knows for sure about all of this. It's just my best guess.
Posted by nomoremuscles (Member # 9560) on :
Your immune response might be messed up, for many of us this is the case. But I agree with the others, the bugs are fueling it.
Posted by Bugg (Member # 8095) on :
It's so kind of all of you to respond. I really appreciate the feedback.
Just to clarify, I have treated for all coinfections and for lyme with EVERYTHING under the sun. My LLMD in NYC thinks using abx at this point is no longer effective. If I even try to take abx at this point, my legs are set on fire. At my last visit, my LLMD said he and his LLMD colleagues have many lyme patients who've treated for years but are still left in this "inflamed" state. He doesn't know whether it's the immune system attacking the muscle tissue/nerves or whether it's the residual toxins.
The only thing that keeps me going is lots of vitamin D and magnesium and some calcium. Some days due to the pulsating, ragged nerve, aching feeling in my legs, I wish I could just lob them off .....The pain is 24/7 and there's no apparent cycle to it....I've tried abx, supplements, exercise, HBOT, infrared sauna...the list goes on and the pain and stiffness is still there....
I guess I just don't understand why, if so many lyme patients are like me post-treatment, that the science doesn't exist to determine if it's the immune system attacking or if it's the toxins....I hope one day soon we will all have an answer to this question....
Just fyi, I've been tested for everything including immune system and all the tests come back normal...I haven't however had the c3 and c4 tests...maybe I should check into that....
Posted by nomoremuscles (Member # 9560) on :
Bugg,
Have you tried LDN?
Posted by nenet (Member # 13174) on :
As far as I was aware there is no test to conclude that you do not have Lyme or coinfections any longer. I have read many studies that show that Lyme is a persistant infection, and I (personally) understand that remission means you have gotten to the point where you are keeping it in check with your own immune system.
Can you direct us to any studies or reports that say there is such testing to prove lack of infection, either with Lyme or any of the known coinfections? That would be some great news.
As for your current symptoms, it sounds like persistant Lyme (or coinfection(s)) symptoms to me, but I am not a Lyme Doctor, or a medical professional. Joint pain and burning pain in muscles were and are some of my usual symptoms.
May I ask how long you treated, and if you were under ILADS LLMD(s)? I have read many cases here of people who treated for many years and said they'd tried it all, everything, no stone left unturned, no coinfection not tested for, no opportunistic infection not checked for....
only for them to one day find out they had missed something after all, and that last diagnosis or treatment got them all the way better. I have read this type of scenario MANY times. I imagine you have too, but I feel it's worth mentioning. So perhaps that it is not outside the realm of possibility for you as well.
Posted by Keebler (Member # 12673) on :
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It's hard to see how a patient can be "post-treatment" until the treatment has worked. If the treatment has not worked, I say the doctor needs to keep looking. Or you need a better doctor.
I think your doctor is short-sighted to think it has to be one or the other: " the immune system attacking the muscle tissue/nerves or whether it's the residual toxins. "
You still may be dealing with infection but a different method need to be considered. I know you said you've done alot of different things but it is still possible to still have a chronic stealth infection - did your doctor check beyond the tick-borne infections?
Did you get assessed and tested for Cpn? HHV-6, etc.
Have they ruled out other intestinal parasites or given treatment for a wide range of possible candidates? Often, parasites will add to the burden.
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And, has your doctor consisered porphyria. Many neurological symptoms can result form that. AND there are ways to work around it.
RIFE machine - with lyme and TBD (tick-borne disease).
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In the meantime, maybe IV magnesium would help. Marnie has a few excellent posts today about this.
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Posted by nenet (Member # 13174) on :
As for your question, no, as much as IDSA and IDSA-paradigm-leaning researchers have tried to prove that there is such a thing as "Post-Lyme Syndrome" that is caused by an autoimmune inflammatory scenario, they have NOT been able to do so.
There is absolutely NO evidence for this autoimmune inflammatory hypothesis, and yet there is decades of research proving the opposite, that there is persistant, active infection by Lyme spirochetes long after what might be considered (by some) to be "adequate" treatment.
How is your Doctor determining that you have had adequate or sufficient antibiotic treatment? With the tests you mentioned? Is this an ILADS LLMD?
Posted by Keebler (Member # 12673) on :
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To add to nenet's post, please go back up and read the articles posted on this subject. It is vital to know all about the borrelia spirochete: it's forms, shapes, behavior, patterns, etc.
I think your doctor does not have the necessary knowledge. For, if one understands the spirochete, one never gives up until success is achieved.
And, again, it also might be that you are experiencing problems with secondary porphyria.
If you make a few changes, you may still be able to regain health. Really. Don't believe this stuff about being stuck with "post" anything.
Once Mg levels dive, the downward spiral doesn't stop.
But my "money" is on persistant very "deep" infection AND low levels of intracellular Mg.
Many diseases ultimately can turn genes OFF...cancer *protective* genes.
Question is: can these genes, the protective ones, be turned back ON once an infection is eliminated (if it is)?
Posted by sutherngrl (Member # 16270) on :
Well I can put my 2 cents in. I treated LD for 1 year with absolutely no positive results. I use a ILADS LLMD and we are now looking at the possibility that I have an autoimmune illness. My WB only showed band 41 positive, and I never saw a tick or a rash.
I think it is possible that some people that just never get better after years of Lyme treatment may actually be dealing with an autoimmune reaction. Either that is what they had to begin with or it was induced by LD or possibly by all the medications taken for LD.
This is just my 2 cents and no I don't have any research to back it up. I just think it makes sense. I can see how your body could start to attack itself thinking it was attacking a bacteria that is no longer there.
IMO, it might just be the reason so many never seem to get better.
Posted by Keebler (Member # 12673) on :
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Sutherngrl,
Were you tested for Cpn?
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Posted by Bugg (Member # 8095) on :
Wow. These are such thoughtful and intelligent and caring responses. Thanks so much.
To answer some of your questions, I have have seen three different ILADS LLMDs. In fact, my current LLMD who made the statement that many lyme patients are left AFTER TREATMENT in this inflamed state consulted with Dr. Burrascano. I treated, off and on, for 41/2 years with IV and oral abx and did some HBOT, infrared sauna, and nutritional IVs. Also did detox. Yes, I was tested for all of the viruses mentioned as well as others such as HSV-1...etc...all negative..
My titers to lyme and all co-infections including ANA, C reactive protein...etc were abnormal but are all now completely normal....
If I try to treat with any abx for lyme or a coinfection, the inflamed feeling/achiness becomes EXCRUCIATING....
Before lyme, like so many of you, I was in excellent health and physically very strong....
I have a number of people in my lyme group who are in the same boat as I....treated for years and years and years but still suffering with a lot of muscle aches/joint pain/nerve pain/fatigue...
In many ways, this all-over muscle pain is much worse than the initial symptoms of lyme which were predominantly joint stiffness and cognitive dysfunction... I just wonder if some of the abx also damaged some nerves in my muscles and nerves along with the disease itself, of course...
Who knows...
By the way, what is LDN?
Thanks again for all of the suggestions...If I could just calm this muscle/nerve inflammation-type issue, I feel like I could really move on with my life...
Posted by sutherngrl (Member # 16270) on :
Keebler, I will have to look through some of my medical records and see if that was one of the things they tested me for.
I am going to have to read up on it, as I really can't remember that much about Cpn.
I am so after the right diagnosis right now. But do think my doc is on to something with the autoimmune issue.
Posted by Keebler (Member # 12673) on :
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Many of the chronic stealth infections can mimic autoimmune response.
It's just wise to rule out as many stealth infections as possible (Cpn, mycoplasma, HHV-6 . . . all from Timica's thread above -- and liver conditions, too) before tossing in the towel.
There may be other ways to treat but, often, an autoimmune diagnosis can be an easy out for doctors and also a wasteland for patients. If Rx are rough, allicin might help and it can cover a variety of things.
There are some measurements in this article for the immune system to see if infection is related and how to work with the different Th1 and Th2 parts of the immune system:
Not necessarily related to lyme, but I had aptthous ulcers in my mouth - and severe and constant burning for every day for FOUR years. I was told by several doctors that aphthous ulcers were autoimmune. One doctor even gave me a steroid cream (which I did not use as it's contraindicated with lyme - although I've never been on a formal Rx treatment protocol).
But, when I started taking andrographis, within one week, my mouth cleared up. Andrographis is anti-microbial.
So, my mouth ulcers were clearly from infection, not autoimmune. So often, doctors just take the easy route when things get difficult.
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Posted by sutherngrl (Member # 16270) on :
Keebler thanks for the advice. I have actually found 1 doc in a million, who is not about taking the easy way out at all. He still uses one day a week to research to help his patients.
He also has not ruled LD out yet either. That is why I am still hanging around! That and the fact that I love my lyme family.
I do feel though that it is important not to get so stuck on Lyme that you don't consider other things along the way. That is how I was for the past year. No one could have convinced me that I didn't have LD. Now I am willing to look for answers in all directions. I just want to feel better!
![[Smile]](smile.gif)
.....The pain is 24/7 and there's no apparent cycle to it....I've tried abx, supplements, exercise, HBOT, infrared sauna...the list goes on and the pain and stiffness is still there....