Just wanted to let you guys know I saw a specialist recently and there is a connection with Dysautonomia and Lyme. If someone has the classic POTS symptoms but also has joint and muscle pain you might want to get a Lyme Disease test cause Lyme Disease can cause Autonomic Dysfunction in late case "Cronic Lyme." I am currently reading in on it more as well. From what my doctor said it is a cureable form of Dysautonomia.
I have heard that, too.
My son saw a neurologist yesterday who was very interested in Nick's possible connection with lyme disease. He had a pretty sudden onset of POTS, all the typical dysautonomia symptoms and has a lot of joint and muscle pain as well, without the hypermobility. He was tested for lyme with two different results. Took a 3-week course of doxycycline and then that possibility was dropped by the primary care.
This neuro, though, was very concerned about it, asked lots of questions, and took LOTS of notes. He will be consulting with Dr. Rowe, whom we see next month, and I'm sure that possibility will come back up.
The neuro did mention to us that if he HAD to get lyme disease, this was the place to do it b/c there are so many "experts" around here (we live in MD). I was going to mention that maybe there are so many experts because there are so many people around here who get it--a two-edged sword! :)
"Cureable"---what a great word to see written around here.....we can always hope.
There's a book by Dr. David S. Bell that talks about ME, CFS, Fibro, OI/Dysauto, Multiple Chemical Sensitivities, Chronic Lyme, and Transformed Migraine all having a common underlying cellular pathology (though having different original causes obviously, and different manifestations). It's a pretty slim volume, so it can be a bit technical at times. I found it readable despite the technical jargon. It's one of my favorite texts that I've read this year. Thought I would mention it here as you were discussing the connection between Lyme and Dysauto:
Hi, Does blood work have to come back positive for Lyme to have Lyme disease? My 16 year old son has all the POTS symptoms along with horrible body pain. He was just diagnosed with migraine dysautonomia with POTS symptoms. Two doctors - specialists in dysautonomia - said he has POTS and the third doctor just diagnosed him with migraine dys. He has never responded to any medicines in the three years he has been suffering. ( midodrine, salt, florinoff, etc...) Just want to get your thoughts. Thanks, Michele
just ordered it-thanks!
I am a little concerned it will be over my head. When friends start talking about CFS and such my eyes usually glaze over and I have no idea what they're talking about. Maybe this time it will sink in! :)
You don't have to have a possitive lyme to test to be possitive for lyme because there are over 100 strands of the disease and the test only tests possitive for the European strand protein. I tested negative for the disease like 10 times and only had 3.5 of the 4 required CDC criteria for Lyme. I only tested possitive after i had a spinal tap and had the fluid sent out to a lab for DNA testing that they confermed I had Lyme. Even the DNA tests can come up with a false negative because the disease is only found in spinal fluid if the disease has spread to a neurological lyme state.
In the past more bands were allowed in the Western Blot test but 2 major proteins vertually found in all strands of the disease was eliminated from the test to used for the vaccine. You cannot get the Western blot test unless you pass the Ilisa but even that is not a very good diagnostic test. When people who recieved the vaccine took the test they scored high on the western blot so in order to know who took the vaccine and who had the disease (although some evidence shows those who took the vaccine later had symptoms similar to chronic lyme patients) the CDC eliminated those proteins as a marker for the disease even though 80% of people who had lyme disease had that protein. The test is no longer as strong diagnosticly but the CDC stands behind its decision forcing many Lyme Disease patients without proper diagnosis. Many insurance companies refuse treatment unless you test possitive on the western blot test so naturally they were in favor of the new CDC guidelines set by the CDC. Many of the CDC panel members had conflict of intrests and recieved kick backs and or research funding from the insurance companies to pass the new guidelines. I have done my research.
If you had a round bullseye at one point, followed by joint pain and headaches...and weeks to months later had cardiac or neurological or cognitive problems that come and co every month to every six months and your disautonomia was started after all this it may be because you are infected with a tick born disease like Lyme or other coinfections. Lyme disease can attach itself to the heart and vertually passes through any tissue so it can damage nurves, tissue, organs, etc. There is lots of evidence it may be the couse of your disautonomia. I am currently getting treated and havn't had a single episode but I can't say there is a "Cure" for Lyme yet because I have had 4 rounds of antibiotics and as soon as I stop them about 6 months later my Lyme and disautonomia start up again. I'm hopeful that this time they can eradicate the disease though and with it my disautonomia.
It's all really interesting and overwhelming to me. I got my book and have been reading it over the last couple of days.
So are you saying that if you have chronic lyme then staying on antibiotics should keep you from having episodes?
I ask b/c although Nick took that initial round of doxycycline and then our primary care said to forget about it, he has actually been prescribed doxycycline from his dermatologist for acne and thus has been on it for almost a year now---with no relief from any symptoms whatsoever.
Or maybe it's just finding the right antibiotic?
so much researching to do.....
I bought three extra copies of Dr. Bell's book, to give to his specialists. I think it is a real eye-opener, a great place to start to understand why severe symptoms continue that are so difficult to treat. Now, if he would only publish a book that outlines treatment therapies that work! sigh.....
Dr. Bell does say in that book that he has not had great success with long-term antibiotics in his patients with chronic Lyme.
If you want to know the answer to the question "How the heck did this happen to me in the first place"? then Dr. Bell's book is worth reading. (It's very short). It does not tell you what to do to get better, but it does mention many tests doctors and researchers have done to find some answers.
I like doing my own online research on AD and CFS symptoms and causes, so I enjoyed reading it. As I said, I think it is a great starting point to understand how these illnesses begin, and why you get worse, instead of better.
Just wanted to repost and update you. I had been on Doxycycline multiple times without help but my Lyme doctor later put me on Tetracycline since it can penetrate through membraines and cell walls. I was on it for about 6 months and since then I have not had a single sincope episode, and my neuropothy subsided greatly. I still take
propranolol and midodrine but many of my old symptoms have subsided and I live a normal life now. I feel great and healthy again. Try and see if you can be on Tetracycline it is better for late stage Lyme since it can go into your spinal fluid, brain, or anything with fluid in your body. Doxycyline will only travel through blood.
I just read your post from 2010. My daughter has recently had sudden onset of pots symptoms. We are seeking treatment with a LLMD. We are waiting for blood work through iganex. I was wondering how your journey went.
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