posted
Hi all, I'm new to this listserv so please forgive if this topic has already been addressed. I've been dealing with Lyme affecting CNS function for 7 years or so. Main sx involve muscle stiffness, muscle cramps, fasciculations, with balance problems, severe problems walking, occasional slowed speech, impaired sleep. Several years ago a renowned LLMD told me that Lyme had triggered a reaction in my body that is not easily "turned off". I was too ignorant at the time to ask him if he meant autoimmune, but this sounds like what he was talking about. If he's right, have others found some treatments that help to eliminate this autoimmune response? Many thanks for any and all help.
Posts: 4 | From Dover, NH | Registered: Mar 2013
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
The problem is that you still have lyme disease. It is NOT that lyme triggered anything at all.
Welcome to the lyme disease controvery. Get treated for lyme by a doctor who treats nothing but lyme. That gives you the best chance of getting rid of this horrendous disease.
Post in "Seeking a Doctor" forum and people will send you names of doctors. We don't put the names on the public board because often state medical boards will go after lyme doctors who believe the patient still has lyme and needs lyme treatment until all of their symptoms are gone--just like we treat every other disease.
A lyme doctor will treat you with high dose combinations of antibiotics until all of your symptoms resolve. This generally takes a minimum of a year, but often a few years once the lyme has gone on for over a year as in your case.
So sorry this happened to you. The story is all too common. This is all due to the medical controversy surrounding lyme disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
Thank you for these responses. What's confusing is that the doctor who relayed this message is a pretty famous alternative med doc, in fact he appeared in Under Our Skin (I'd mention his name but I don't think we're supposed to in this forum). I do have concerns about straight abx treatment as I don't know about long term effects, eg on my gut. I also wonder about abx re co-infections and issues such as fungus and parasites.
Posts: 4 | From Dover, NH | Registered: Mar 2013
| IP: Logged |
posted
There are Lyme literate physicians,some well known ones, who have written that those with the HLA-DR4 and perhaps other genetic alleles, are prone to autoimmunity triggered by Lyme, and therefore, to "intractable Lyme." Antibiotics will not treat this.
The original Lyme controversy (and I have been around for quite a few years) was not whether an autoimmune reaction existed. It was whether Lyme bacteria were still in the body during that reaction, or if that reaction could continue past the eradication of the bacteria. I think that with time, many of us have come to feel that the bacteria really never get eradicated: it is possible that they get reduced to a point where the immune system does a little better job with them.
But I have also come to feel that regardless of the bacterial presence or not, there is an autoimmune illness that was triggered by Lyme but that persists indefinitely for some patients.
My daughter and I both have the HLA-DR 4 allele and both have sky high ANA's and have lupus diagnoses. I don't really care what they call it. The fact of the matter is that steroids, which people here will tell you are dangerous, raise my daughter from the dead every time.
The things we are all dealing with are strange and mysterious and maintaining flexibility in your point of view is important. I don't know where my daughter would be right now without steroids. She will soon graduate from an Ivy League School after many years as an invalid.
Posts: 108 | From US | Registered: Apr 2012
| IP: Logged |
This is the same document Lymetoo recommended that you read. It will educate you on all of the topics you have brought up, for example, coinfections.
Burrascano says at lyme conferences that anyone sick with lyme at least 1 year definitely has coinfections 100% of the time. Each of these has its own particular treatment. Read it in the Guidelines. If every coinfection the patient has is NOT treated, the patient will never get well.
Also, you owe it to yourself not to take as gospel what any one person (lyme doctor on Under Our Skin or whoever) says without researching it yourself and getting other opinions.
Most of the time, the patient still has lyme disease. This is especially true if you were never treated for the coinfections babesiosis and bartonella.
A minority of people have the genetic problem mentioned above. Let's not classify you in that group until you first get good treatment for lyme and the major coinfections and some testing to find out what else is wrong with you.
Regarding "straight antibiotics" as you call it, the Burrascano protocol is the most successful lyme treatment protocol in the world. It is used all over the world. It is a 4-pronged approach:
--high dose combinations of antibiotics --supplements and herbs --a certain diet, and --a certain type of exercise (weight lifting for 1 continous hour every other day)
All 4 prongs are needed to achieve wellness. I had undiagnosed lyme disease for at least 10 years before a doctor tested me for lyme disease. Still, I got well by going to a Burrascano-type doctor and doing all 4 prongs. It has now been 8 years since I completed my treatment. I am totally symptom free. I have the same life I had before lyme disease.
But, I went through a few lyme doctors before I found one who knew enough to cure me. I suggest that you give a few other top notch lyme doctors a try.
Regarding the danger of long-term antibiotics, Burrascano says:
"Remember, years of experience with chronic antibiotic therapy in other conditions, including rheumatic fever, acne, gingivitis, recurrent otitis, recurrent cystitis, COPD, bronchiectasis, and others have not revealed any consistent dire consequences as a result of such medication use. Indeed, the very real consequences of untreated, chronic persistent infection by B. burgdorferi can be far worse than the potential consequences of this treatment." (page 22)
In my own life, I was on antibiotics for rheumatic fever from second grade until 9th grade. That's how I finally got rid of rheumatic fever. No ill effects from the treatment.
Also, I was on high-dose antibiotics for lyme and coinfections for 3 years continuously. I suffered no ill effects. The lyme doctors teach you how to replenish your gut flora so that you don't suffer gut problems. You take lots of probiotics and you eat the anti-yeast diet mentioned above, etc.
You will see how Burrascano addresses the gut throughout the Guidelines. For example, the interruption of IV antibiotics for a number of days per week to preserve gut flora. So, lyme doctors are very conscious of the gut during treatment.
For example, see this quote from page 22:
"The induction of Clostridium difficile toxin production is seen most commonly with ceftriaxone, but can occur with any of the antibiotic regimens mentioned in this document. However, pulsed dose therapy and regular use of the lactobacillus preparations seems to be helpful in controlling yeast and antibiotic related colitis, as the number of cases of C. difficile in Lyme patients is low when these guidelines are followed. Be sure to test stool for both toxin A and toxin B when evaluating for C. difficile colitis."
So, high-dose antibiotic therapy is a well thought out protocol that considers the impact on the gut and minimizes it.
Now that you have found this forum, I hope you will seek out the opinions of other well-known lyme doctors, see if they say you still have lyme disease, and try their treatment/suggestions and hopefully get fully restored to health.
Lyme disease will not go away on its own. On the contrary, it will only progress as time goes by if you do not stop it in its tracks with adequate therapy. It destroys the nervous system and the mind.
I really believe there is hope for you. I can give you the name of a top notch lyme doctor if you would want another opinion. Just click on the envelope above my post and let me know if you want it. Tell me the name of the doctor who told you about the "trigger" and I will tell you what I know about him also.
Continue to read and learn and draw your own conclusions. You are the best advocate for your health and your life.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
By the way, though I mentioned steroids, the first approach with lupus or autoimmune illness is Plaquenil, which, fortunately, is also often used for Lyme, along with other meds.
I would get your HLA typing done, and your ANA at the very least. Infections also raise ANA, so there are other rheumatological tests that could help clarify things, but that's a start. You may have co-infections to treat. But if your problem is autoimmune, see if you can do Plaquenil for awhile.
One other thing: if you have been on tetracycline or minocycline at all, they can induce lupus, which then goes away when the drug is stopped. This happened to me. I was so much sicker during treatment than when I stopped, and the LLMD kept telling me that it was "herxing." NO, it was drug-induced lupus.
Antibiotics can really cause a lot of stomach problems, which then result in multiple allergies. Trying to get off was tough for me but an integrative med MD finally told me I was suffering from withdrawal, not relapse, and helped me get off.
Posts: 108 | From US | Registered: Apr 2012
| IP: Logged |
posted
Often autoimmune processes are triggered by infections. The problem arises in chronic infection where even a low presence of a pathogen like borrelia is enough to initiate ongoing inflammation and autoimmunity in a genetically susceptible person. Treat the infections to the best potential and modulate the immune system with LDN. Low dose naltrexone can do wonders to switch a confused immune system from inflammatory mode and autoimmunity. I am HLA DR4+ also going gluten free has been helpful.
Posts: 747 | From Utah | Registered: Apr 2010
| IP: Logged |
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/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic