mcaimless

Good question. The best I can see is this from a public health publication: "The existence of Lyme disease in Australia continues to be debated."

For those of you who can tune into the Diane Rehm Show on NPR tomorrow there will be a segment about Chronic Lyme Disease with several guests. 11:00Controversy over Chronic Lyme Disease Chronic Lyme Disease is one of the most controversial issues in medicine today. Diane and her guests discuss the battle over diagnosis, treatment, and whether Chronic Lyme Disease even exists. Guests Dr. Samuel Shor, Internist in private practice and Associate Clinical Professor at George Washington University. Pamela Weintraub, A senior editor at "Discover" Magazine and author of "Cure Unknown" Phillip Baker, Executive Director of the American Lyme Disease Foundation and microbiologist, former Project Officer of Lyme Disease studies at the National Institute of Allergies and Infectious Diseases. You can listen online or see transcripts : http://wamu.org/programs/dr/09/04/20.php#25417

Erin, LDN is being used with much success for Lyme and many LLMDs prescribe it. Dr Ken Singleton, author of "The Lyme Disease Solution" is also a proponant of LDN for late stage Lyme. You cannot take it if you are being prescribed any narcotic painkillers though. I am paying for my LDN out of pocket and it isn't a terribly expensive drug-- about $30 a month from a compounding pharmacy. Check out the lowdosenaltrexone.org site for recommended pharmacies. I've only been on 2mg starting dose for 4 days now so it's too early to tell if it's helping me or not. I don't have Lyme but I do have Fibromyalgia and RA and accompanying dysautonomia and POTS. I think we all have a combination of factors that contribute to these syndromes and diseases, including stress, environmental toxins, and genetics. I have a sibling and my mother with autoimmune disease. I lived my childhood in a smoking household and used toxic chemicals in my work. I was subjected to a terrible amount of stress during much of my adult life with resultant PTSD. All of these things, I believe, are factors in why I am where I am now healthwise.

I tend to agree with you Gary. I've done a lot of research on this, (as have many of us) and feel that this is an immune system dysfunction, be it under or over activated. I really believe that many of the cases of dysautonomia stem from autoimmune disease as well as its offshoots like FMS and CFS. I also know that immunocompromised people have autonomic dysfunction as well. I am currently exploring LDN (Low Dose Naltrexone) as a promising way to treat this at the source (by blocking the opiate receptors and allowing an increase in endorphins). LDN is an immune system modulator and it seems to work well with all kinds of immune and neurological disease. I've started on 2mg and while it's too early to tell yet, I'm hopeful it will help me. If you're interested check out the LDN site at lowdosenaltrexone.org and there is also a Wikipedia entry on it. There is also a very good book out by Elaine Moore called "The Promise of Low Dose Naltrexone Therapy".

Here is an article on chest pain and fibro. Please understand that while the diagnostic criterea for fibro includes widespread pain throughout the body (and presumably you had this with numerous tender points at your time of diagnosis) the acute pain episodes can be one sided and migratory. The chest pain and high pulse rate is a very common part of the syndrome. http://www.fibromyalgia-symptoms.org/fibromyalgia_chest_symptoms.html

My fibro pain wanders all over the place. It can be one sided much of the time (my RA inflammation and pain is usually bilateral though). I agree that I'm not keen on drugs but I don't think that Lyrica or Neurotin have CA risk. And I'm even less keen on narcotics like Vicoden. I currently take a baby dose of Lyrica (just 25 mg at bedtime) and it controls my neuropathy pain in my feet and hands. I always start at about half the dose of any meds I'm trying to see if I can get by with the least amount possible. I was not able to tolerate Cymbalta but it's supposed to help many who can tolerate it (my sister-in-law with fibro swears by it). I'm currently doing a trial of a medication called low-dose-naltrexone (LDN). I just started on it so it's too early to tell but I suggest you google and read up on it. The dosage is very low and there are really no downsides to trying it (except you can't take opiates while on it because it binds with opiate receptors?and since it?s an off-label use it can be challenging to find a prescriber, I had to go to a naturopath but there are docs who do phone consults and prescribe). There is an ongoing clinical trial of LDN for fibromyalgia at Stanford and from what I've heard the results are promising. Keep searching for what works for you!

Have you been worked up for rheumatoid arthritis or any other autoimmune disease? One of the main criteria for RA is morning stiffness lasting more than 1/2 hour and you sound like you got much more than that. Have you had your rheumatoid factor, ANA, sed rate, CR-P checked? Even if these come back negative the definitive diagnosis for RA is an MRI of the hands (or in your case wrists too) to check for synovitis. Also your extreme pain can be from an accompanying fibromyalgia (I have both RA and Fibro and it took me over 2 years to get diagnosed-- my symptoms at first were dysautonomia and POTS and they progressed to joint pain and the classic fibro symptoms). Fibro pain can be some of the worst around and you sound like you're in that category too. I'd really push to see a rheumatologist who is versed in both RA and fibro and get all the appropriate tests if you haven't already.

I will also emphasize that your pain sounds more like fibromyalgia than typical dysautonomia. Have you seen a rheumatologist? Also have you tried Lyrica for neuropathic pain? Doctors who diagnose and treat POTS rarely if ever realize that fibro often presents with autonomic dysfunction. It's still a very poorly understood and (in my opinion) very underdiagnosed syndrome.

Hi from another Arizonian (Gold Canyon). I have recently been diagnosed with fibromyalgia and it all started with classic dysautonomia symptoms over 2 years ago. In fact fibro (or FMS) often presents with dysautonomia and many, many people with dys are actually in the early stages of either FMS or chronic fatigue syndrome (CFS) and not properly diagnosed. My initial symptoms were POTS and I had no pain issues at first. The pain, brain fog, sleep disorders and other symptoms came along later. I suggest that if you have pain, brainfog or other major cognitive dysfunction, fragmented sleep, overwhelming fatigue, IBS or other bowel dysfunction associated with your dys that you seek out a good rheumatologist to be evaluated for FMS. Do a search on autonomic dysfunction and fibromyalgia and research to see if this seems to pertain to you. There is a whole lot of research and many peer-reviewed publications on how FMS is actually a result of ANS dysfunction and overactive sympathetic activity. I am currently getting ready to try a new treatment called Low Dose Naltrexone (LDN). It is being used to treat FMS and many other diseases that seem to be caused by dysfunction of the immune system. It acts as an immune system modulator by binding with the opiate receptors and allowing for an increased production of endorphins. Do a search on it if it interests you. There is a study currently underway at Stanford and preliminary results seem promisingl Otherwise the meds for pain are pretty much currently Lyrica, Cymbalta, and other SSRIs, as well as narcotic meds (which I avoid for all the obvious reasons).

I live in the Phoenix area and haven't found a good Dys doc yet. I've heard good things about Dr Goodman at the Mayo here but unfortunately they do not contract with my insurance (Blue Cross Blue Shield) so I can't go there.

Carinaria: The Tilt Table Test is only supposed to last until the patient becomes symptomatic or faints. My first TTT at a hospital in Tucson they did not have any such concerns, they tilted me up and then waited (the tech told me, "this is either going to be very boring or very exciting". In twelve minutes by heart rate plunged to 30 and I fainted and totally freaked out the tech who pushed the panic button. Next thing I knew the room was full of people and the cardiologist was holding my legs up. As any on this forum can attest, fainting on the table is an extremely unpleasant experience. Despite this I also went for more thorough autonomic testing including a second ttt in Boston. I was told by the tech at Beth Israel Deaconess Autonomic Testing Center that while most hospitals wait for patients to faint during the test, it is not necessary to do so and I guess some feel that this is cruel and unecessary to the patient. When he was testing me he kept telling me to let him know if I was feeling badly or was going to faint so he could abort the test. When I started getting the charateristic shortness of breath that proceeds my faint I let him know and he put me back down. This test was still positive for POTS as my HR increase more than 30bpm. In your case it sounds like you had a highly positive test. If your neurologist or cardiologist or EP doesn't read it as so then you need to take the report and findings to a Dr with more knowledge of this syndrome.

I would suggest she get worked up for polymyositis. Proximal muscle weakness and elevated CK are hallmarks of it. She would need an EMG, muscle biopsy, and more blood tests to rule it in or out. I would also suggest you find a good rheumatologist. Good luck!

Sounds like neurocardiogenic syncope (NCS). Look on this site for a good overview of it. Perhaps a tilt table test is in order...

I have been experiencing progressive pain and weakness in my hips and thighs since shortly after the onset of my POTS diagnosis. It is much worse walking up stairs and climbing or decending any hiking trails, etc. I am unable to pedal a bike for any length of time without extreme fatigue. After any hikes or long walks I'd have days of pain in my thighs and calves. Now it is there most of the time and affects my gait and I have to struggle out of a deep chair or out of the car seat. I also have a lot of shoulder pain and find holding my arms over my head a lot more tiring than usual. I saw my PCP yesterday and she thinks I may have polymyositis -- an autoimmune disease that causes weakness of the proximal muscles. My 24 hour urine has twice the upper limit of creatine which is an indicater. Now I have a rheumatology consult and a lot more testing ahead of me. I believe there is a strong connection between dysautonomias and autoimmune disorders and that one can accompany the other quite frequently. I think Dr Grubb and others are arguing that POTS may actually be autoimmune in nature and there's a ton of literature about autoimmune overlaps. So if this sounds like something you are experiencing I would suggest you have the tests done to rule it in or out. There is another autoimmune muscular disorder called mayasthenia gravis that they should explore as well (I'm being tested for that too-- but it primarily is a weakness-only presentation and pain is a big part of my symptoms) and there is one called Lambert-Eaton Myasthenia which has a strong dysautnomia component as well. Good luck!

Sara, Unfortunately I know nothing about midodrine and MG but I AM curious as to how you came to be diagnosed with MG. I've been doing a lot of reading up about it as well as LEMS (Lambert Eaton Mysathenia Syndrome) and from what I read, LEMS seems to be much more correlated with dysautnomias. I've had some concerns myself with prgressive proximal weakness (mostly in my hips) and pain (not considered a MG symptom). Would you mind sharing some of your history? Thanks

Sorry about the link, I'm still trying to figure out the inserts in this forum Comparison of Cases Seropositive and Seronegative for Ganglionic Acetylcholine Receptor Antibody

From what I've read, the Ganglionic AChR antibody test is more specific for autoimmune dysautonomias. ANA is more sensitive for Lupus but not for other autoimmune diseases. Comparison of Cases Seropositive and Seronegative for Ganglionic Acetylcholine Receptor Antibody

I had some vague symptoms when I was young that may or may not be related to dysautonomia but had the full-blown symptoms following surgery when I was 47. I think this is a syndrome that may lie fallow in many of us and becomes active following severe stress like surgery. I also think that many of us with older onset may suffer from dys that is a symptom of another body disorder, like auto-immune or paraneoplastic diseases. The key is to rule out any other thing that may be causing our ANS to malfunction so the underlying cause can be attended to.

You might want to mention to your Doc to check for Myasthenia Gravis or, more likely with dysautonomia, Lambert-Eaton Myasthenia Syndrome. Do a google search for LEMS and see what you think. Here is a link to a general overview of it: Lambert-Eaton Myasthenia Syndrome Good luck and I hope you get answers soon!