This DOES have to do with my case and isn't just about the debate...I'm just wondering if maybe SOME cases of chronic Lyme, like mine, really are from an autoimmune response set off originally by Lyme that persists even though the bacteria are dead.
It sounds like I'm agreeing with the jerks at the IDSA, but I'm not. What I'm thinking is that maybe while many people suffer from ongoing infection and need long term antibiotic therapy, perhaps some people don't. I read some articles that make a good case for autoimmune disease started by Lyme and persisting in spite of the bacteria being gone.
I'm asking because I do not want to go through years of antibiotic use if it is unnecessary and will do no good.
In my particular case, I went through a year of oral only antibiotics, herbals, and dietary/lifestyle changes, and saw almost 100% improvement. This is in stark contrast to many of my friends in the Lyme community who have been on multiple oral and IV antibiotics for YEARS, yet are so debilitated by the disease that they can barely function and can't even work.
However, since stopping all my medications other than some basic vitamins, fish oil, etc. in November, I've had slight flares of symptoms. It's mostly muscle and joint pain, fatigue, some anxiety and cognitive impairment, and headaches and scalp pain. Their intensity pales in comparison to the way they used to be, and they come and go.
Other symptoms that I used to consider the worst ones are completely gone, including extreme sensitivity to sounds and lights, visual and auditory hallucinations, muscle twitching, bell's palsy, numbness and tingling in my extremities, and of course my headache that lasted ten years while I was undiagnosed/misdiagnosed. There were many more, but I'm not going to list them all. To me, if THOSE symptoms come back, I know I'm in trouble and the infection is still there.
But all the symptoms I still struggle with periodically could easily be due to inflammation.
Anyway, I'm having a flare of symptoms, and I'm trying to decide if I should go back to my LLMD and get more antibiotics, or start a round of the Buhner protocol. That would be to kill bacteria though, and what if there are no bacteria and I'm just always going to have periodic problems with autoimmune inflammation because of past Lyme disease?
If it's just that, then wouldn't I do better by JUST taking steps to control inflammation?
I'm going to create a much more in depth post about this later and hopefully find some links to articles on both sides of the debate. My basic hypothesis though is that while most people with chronic Lyme really do have persistent infection and need ongoing treatment, some of us are just dealing with collateral damage.
What do you think? Links to research would be awesome....
Posted by tickle (Member # 36441) on :
I think you're right. While many have chronic infection, there is some evidence of PLTD. Nobody knows for certain.
Your symptoms, though, sound to me like infection. The headaches, fatigue, anxiety...I would say that's active infection. I'm not a doctor, though, just going by what I've read and experienced.
Posted by tickle (Member # 36441) on :
If I were you, and I know i'm not, but I would go on buhner's herbs or other herbs until the symptoms subside.
Detoxing and all the lyme rigamarole.
Posted by TerryK (Member # 8552) on :
If it was autoimmune only wouldn't you still have had symptoms on abx? From what you said, symptoms were gone and after going off abx they have been flaring.
Is the flare the typical interval of a lyme flare (can't remember but I *think* it has a 24 day cycle?).
Because the spirochetes are driven into cyst form you always take a chance that they will cause active infection.
I do think many if not most of us have autoimmune issues. I know I do. My doctor told me that the theory is that the spirochete inserts it's DNA into ours and thus our body considers our DNA foreign.
If I were in your situation I would use the clinical model to see if I could tell what the issues might be. If you go back on the same regime that got you well and the symptoms start to diminish then that will likely answer your question.
Terry I'm not a doctor
Posted by Lymetoo (Member # 743) on :
I believe I have collateral damage. Mainly because I had Lyme 42 yrs before being diagnosed and treated.
Have you tried getting treatment for candida/yeast and going on a gluten free diet?/
When I went GF, the rest of my muscle and joint pain left.
PS.. I've been off abx for 8 yrs now.
Posted by pug7 (Member # 36995) on :
Have you had an ANA test, or any other tests for autoimmunity?
I am in the same situation, but have very high ANA's, skin biopsy that was positive for autoimmunity, and cannot go in the sun without becoming very ill. I have a "lupus" diagnosis, but don't care about labels. I am on plaquenil which helps some.
I read a good article about rheumatic fever from strep. Most people get strep, but only some people are genetically susceptible to the chronic effects of strep (rheumatic fever and heart damage). For Lyme, I have read that those with the genetic allele HLA-DR4 develop "intractable" disease because Lyme triggers autoimmune illness.
I will PM you some articles.
You could try antibiotics for a few weeks and see what happens, or you can decide to accept whatever residual flares you have and do other things to maximize your health.
We need more research, obviously. Noone really knows and we are kind of on our own, or that's how I feel anyway.
Posted by sparkle7 (Member # 10397) on :
TerryK - re: My doctor told me that the theory is that the spirochete inserts it's DNA into ours and thus our body considers our DNA foreign.
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Do you have any references for this? Just curious about it... I'd like to learn more.
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I don't know anything about autoimmunity. I suspect that this bacteria or parasites, etc. are very difficult to completely irradicate. I suspect that for some of us - we may have to treat it as a lifelong thing.
Have you tried any anti-parasite protocols? Alot of people are doing them these days for Lyme & related illnesses.
Posted by jenniferk32 (Member # 30718) on :
Terryk- YES the Dna theory is exactly what I read in various articles. I didn't fully understand it, but it did say that the longer a person goes untreated, the worse it is because the surface prortiens of the spirochetes are constantly mutating to evade the immune system. So there isn't just ONE lyme Dna inserted into our dna, but many subtypes, causing even more immune system overdrive. I went ten years from EM rash and symptom onset (didn't know what the heck it was) to treatment.
Posted by nonna05 (Member # 33557) on :
When I see thought's of Autoimmune, I get concerned that they will try steroids to get inflammation down. .and until you know this LD is gone for sure I would hate to see you go through that
I went through several years of treating ,unknown, infection,,, finally diagnosed last Aug. I would take meds ,pull out of it, with small hiccups here and there....
Then it took more and more to self/Dr. treat. Then steroid shots and the games began..
not fun at all.. I hope you are well and done,, just be very careful Posted by Lymedin2010 (Member # 34322) on :
Yes, it is true, that Borrelia can exchange DNA snippets with our cells. This may even be done through a virus. The longer you remain sick and untreated, the better the chances for this are. These transgenic mutations can be a source of autoimmune.
Pamela Weintraub mentions this in "Cure Unknown" as well.
More likely than not, it is a case where BB or coinfections have entered a cell (or even biofilm), where they are untouchable by your immune system. These bacteria secrete various proteins that then seep out of your infected cells (or the biofilm).
Through the process of protein excretion from the cell, your white blood cells can attack your own cells via the attached and unrecognized surface protein. With biofilm, WBC's can aggregate around the biofilm attracted to the foreign excretion of proteins and causing further inflammation in the afflicted area.
Posted by sixgoofykids (Member # 11141) on :
Maybe try herbs and some heavy duty detoxification? I know someone who ONLY ever addressed methylation and other detoxification and got better from Lyme. Once that stress was off her body, her own body could heal.
It sounds as if your body is doing pretty good on its own but needs a little help right now with this flare. I would probably see if I could get the flare under control with herbs before I went back to the LLMD. The idea is to get the body so it can heal itself .... our bodies should be able to fight the infection .... sometimes they just need a little (or a lot of) help.
I had Lyme for over 30 years and have very little long-term damage. I have tightness on my left side and my shoulder is taking its time in unfreezing. But I have no pain. I would be concerned the pain might be active infection.
You also might consider exercise (you didn't mention whether you were doing it). Dr. B has said that he's seen people put Lyme in remission from exercise alone, that exercise is THAT important! I like pilates because it reaches the deep muscles. Pick one you like because you'll want to keep up with it indefinitely. Think of what happens to a stagnant pond vs one that has a fountain in it. Movement heals.
Posted by Marnie (Member # 773) on :
Abx. alter the immune response and can indeed lower inflammation levels.
It appears "chronic lyme" is an ongoing inflammatory response to "leftover" proteins that the body was unable to break apart or is a result of an ongoing response because many of Bb's proteins are IDENTICAL to our own (Hsp60 is one)! Hence...destroy self in the process of trying to rid the leftover proteins.
Most very current research (2011 and 2012) indicates that.
Yes, indeed...keep moving...walks, gentle pool exercising...whatever you can do.
My elderly mother (years ago) was in the hospital for gall bladder surgery and her potassium level was low. I pleaded with the doctor to ALSO give her ONE DOSE of IV Mg.
While it did cause an episode of diarrhea, over the next two years she did not have any "arthritis" symptoms in her knee (one really bad one - degenerated).
Later, she tried steroid shots (directly into the knee) which helped, but not like the IV Mg.
Truth.
Mg is an anti-inflammatory, anti-histamine and inhibits HMG CoA reductase (like statin drugs and berberine).
Posted by sparkle7 (Member # 10397) on :
re: Yes, it is true, that Borrelia can exchange DNA snippets with our cells. This may even be done through a virus. The longer you remain sick and untreated, the better the chances for this are. These transgenic mutations can be a source of autoimmune.
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What virus? I thought a spirochete was a bacteria?
I was just reading about viruses being used as vehicles for delivering modifications to DNA. They think it may be being used for people in the Olymipics... They don't have a way to test for it - so they say...
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