beggiatoa

I checked my Creatine kinase enzymes and these were always high. I suspected I had some kind of muscle wasting disorder. I have always been hypotonic and not very muscular despite many, many attempts at growing muscle in the gym. That, together with my typical weakness, dropping things from my hands, etc. prompted me to get this done. I think everyone with dysautonomia should have this test done. It will help narrow where the problem is exactly. It seems not all dysautonomia is made the same. In my case, the dying back of my axons is reversible if I find the cause. I'm hopeful. Plus, a little research shows there are plenty of substances that can stimulate axons to grow. Thing is, Doctor's always missed my CK enzymes. This is something I did on my own. If it were for the docs I guess I would have never been diagnosed.

I went in for an electromiography and finally have solid proof that this stuff wasn't all in my head. The results show that I have a type of peripheral neuropathy (also considered a type of polyneuropathy) called DISTAL AXONOPATHY. I also see it called by axonal polyneuropathy. In short, my axons are degenerating from their most distal point. The cause is specifically a "toxin". Big help, eh? I wonder what toxin I was exposed to that could have caused this??? There's obviously an autonomic component to it since the degeneration doesn't discriminate the type of axons affected. These nerve disorders are quite complex. I'm going to see a neurologist to try and pinpoint the cause. I really have no idea where to begin. One possible cause is Mercury toxicity. I had 6 amalgams which I finally got removed last year. shows how mercury causes degeneration of axons and dendrites. What's interesting is that what I have is not exclusively and autonomic problem. So a dysautonomia is only part of the problem for me. Here I thought all autonomic problems were the same. lol Any ideas folks? Not sure what to do while the neurologist and I go hunting.

It's on my list of things to try. I have some her that I ordered from India. Just waiting to get around to it, I guess.

I've using Ubiquinol, which is a better absorbed form of coQ10. It's apparently 8x more bioavailable. So, I'm using 200 mg UB which equals 1200mg Q10. Great stuff. It's a little pricy but it's 150 softgels, at one at day, and it's doing wonders for me. http://www.iherb.com/Healthy-Origins-Ubiqu...gels/11782?at=0

I've been using Ubiquinol and it's helping a lot. Especially in the area of muscle weakness and energy. It's a better absorbed form of Coq10 and the primary medicine used to treat Mito disorders.

Thanks for the links Nina. What I really want is Etiologies. What causes Dys.? Is it as simple as congenital and acquaired? I think I developed an autonomic neuropathy after an infection with the Epstein Barr virus. How exactly did the virus damage the ANS, where it can't repair itself? Is the virus still active there, is this why my ANS has not healed? This is the kinda stuff I'd like to know. In the acquired form, what exactly is the problem? There appear to be a problem with acetylcholine transmission hence why Mestinon is so effective (for some people anyways). Is is a decrease in Ach production? I read a study linking antibody on acetylcholine receptors. Maybe this is true in some of us?? I need to spend more time reading the site. It seems some of these questions are already answered! Sorry If I'm being redundant. IF the problem is autoimmune, I think this can be improved by using vitamin D and perhaps, inducing autophagy. Just a thought. Is the mayo clinic the only place that tests for these antibodies?

I'm not yet very familiar with navigating the site. Can you point me to a discussion of all the mechanisms. I'm very interested in learning more about them. I spent the last hour reading about secretin and Its use in Autism. It doesn't "cure" autism by it may or may not help the autonomic component. It's sad to see a potential therapeutic tool for "whatever", get such bad press because the Autism crowd beat it to death prematurely. I'm interested in its effectiveness for Dysautonomia. There are no studies on this now, but that's how it all starts. Just read up on how it was concluded that H. pylori caused stomach ulcers. No one would believe this scientist until he finally infected himself with it and proved the relationship. This is what the Wiki on secretin says: So this might help regulate water balance in my body. One of my main problems IS water and electrolyte balance. In addition to being hypotensive, I am always dehydrated and hyponatrenic, hypercalcemic and hypomagnesemic. No matter how much salt I consume, my sodium levels are always low and I'm always thirsty. Also, my eyes, throat, nose all feel dry and irritated. So, at least in my case, Secretin deserves a closer look. I write in a few other forums and one thing I've noticed is that people are too eagered to shoot an idea down simply because it doesn't fit their concept and understanding of the disease. I don't care what I have to do, as long as it improves the outcome of my disease.

I just stumbled on this research while looking reading about folic acid and how it helps acetylcholine. I think it's fascinating. I'm happy to see this discussed ehre already. Yo can read the whole thing here: http://www.freepatentsonline.com/6660831.html I think the point of talking about the other disease was to point out that ALL dysautonomias are caused by a similiar mechanism and therefore, if it can help the dysautonomia in one type of disease, it will probably help in others too. I would be excited to try this on myself if I could access the resources. Seems like injecting Secretin is harmless...what if this could help? I'm not surprised there isn't a lot of info. backing this up! Dysautonomias are so unknown!

A little cardio helps me but if I try to push myself, it's not pretty. I also can't lift heavy weight as I feel like **** afterwards. I do them anyways, so I feel terrible most of the time. It's very frustrating as I cannot build any muscle mass and small gains in strength, I crash.

This is an old post but one that's important. Really, you want your D levels to be above 30 ng/dl and even as high as 70 or more. You can take supplements that offer higher doses, even up to 5000 IU. I personally take 10,000 IU per day with no complications whatsoever. Any of these would be fine http://www.iherb.com/Search?kw=softgel&cid=3032

Read here http://www.ctds.info/ovarian_pain.html I also remember reading how Iodine cured some people of ovarian cysts.

People that have multiple myeloma use as much as 20 grams of curcumin a day. I've never read any reports of hallucinations and such. I myself have used curcumin in high doses for years and have only positive things to say about it.

Yes! I got my first victim! lol Let us know...it might take sometime for you to feel the effects.

Looks like mini-trampolines will have the same effect and their cheaper. The chair is or those that can't stand up at all. Leave it to NASA to find a quick and easy solution to such a huge problem.

Peripheral nerve damage is also seen in Diabetes. This is what causes the peripheral neuropathy, i.e. tingling sensation, loss of feeling etc. For this, the use of Benfotiamine and methyl B12 has been very helpful. It literally helps heal the nerves. Also, TTFD in pill or cream (authia) can help as well. I absolutely believe nerve damage is behind the cause of Dysautonomia. So anything that heals the nerves is helpful here like fat soluble B1 (benfotiamine, TTFD), methyl B12, Fish oil, Lion's mane, etc.

It seems that when astronauts spend too much time in space it screws up their autonomic nervous system. NASA found a simple solution to this (with they would have shared) in a piece of equipment called a rebound chair. You simply sit and bounce up and down and this repairs the ANS. I like the idea because it's TOO simple of a solution, so it has to work. And hey, it's NASA! It costs about $500-600 so I haven't tried it but I wonder if physical therapy or rehab places or hospitals have these available to use. It would be great to find out. http://membres.lycos.fr/chrisdel2/associat.../cheneyII3.html

It gets better! I started doing pilates as well. The first class killed me! I didn't go back unti lthe following week. But I went back. I was having horrible back pain which needed constant readjustment by a chiropractor. 3 classes of pilates corrected this

There's a lot of research behing the use of Benfotiamine or TTFD to treat neuropathy in diabetics and even dysautonomia. Has she considered these treatment options?

I wrote a thread on a life extension forum to see if someone there knows more about this http://www.imminst.org/forum/index.php?sho...mp;#entry277721 It seems benfotiamine, which I'm using now, DOES NOT raise thiamine levels in the brain so it only works on peripheral nerves. I guess this explains why my tremors have improved but nothing else. However, the allithiamine (TTFD) cream or pill DOES increase brain thiamin levels and this helps our Dysautonomia.

Nevermind, I think I answered my own question. Unfortunately, I think the stinky garlic cream IS the most effective method as waterbaby has insisted on. I was trying to avoid this at all cost, plus, it is easier to just take a pill. According to Lonsdale, befotiamine is NOT an allithiamine, therefore it will not have the same biological activity we're looking for. Ecological formulas does make a synthetic form of allithiamine called Allithiamine but again, it's synthetic, not natural. I wonder if it works the same?? http://findarticles.com/p/articles/mi_m0IS...ag=artBody;col1 http://findarticles.com/p/articles/mi_m0IS...ag=artBody;col1 http://findarticles.com/p/articles/mi_m0IS...ag=artBody;col1 http://journals.indexcopernicus.com/fulltxt.php?ICID=11763

There may be a reason why TTFD is more effective than thiamine mononitrate or even Benfotiamine. While these all both derivatives of thiamin, they fall into different categories. http://www.pubmedcentral.nih.gov/articlere...i?artid=1375232 "Although a series of S-acyl derivatives were studied, these investigators found that the disulfides had the best therapeutic effect " Benfotiamine is a S-acyl derivative while TTFD falls under the disulfides. TTFD is also called fursultiamine. "They concluded that thiamine enhances elimination of lead from the body and that this feature may be beneficial in chelation therapy." This is way cool.....but "It was noted that S-acyl derivatives are devoid of the preventive effect against trichloroethylene, potassium cyanide or lead intoxication that characterized their investigation of thiamine propyl disulfide, one of the early disulfide derivatives." So, only the TTFD form can also chelate lead and other nasties from the body. Waterbaby, do you still do phone consultation with Dr. Lonsdale? Maybe you can ask him if Benfotiamine will be as effective as TTFD to treat dysautonomia.

Everything I write I post there. You can search the forums and find my old posts. What's helped best to date, has been Tyrosine. A choline supplement is also effective but only if used occassionally. I'm also experimenting with NAD and has found good results.

I have social anxiety. It started right about the same time the essetial tremor began. I was 19. In my research, Ive discovered that social anxiety is caused by a problem in the Dopaminergic receptors. For that reason, I've found that supplementing Tyrosine in the AM fasted does a neat job in reducing these symptoms. I think this is part of a bigger problem, maybe the dyautonomia or maybe it's mercury toxicity or previews epstein barr virus infections. The point is no single solution has been found to treat this and in my mind will not be found until you treat the bigger cause. I also write a lot in another forum for social anxiety. I'm mostly under the supplements forum under the same name. If it's ok to link other boards, here it is. www.socialanxietysupport.com

I took a closer look and I think I'm going to try it. The prices seem rigth on Iherb. However, I'll probably group this with the rest of the stuff that build tolerance that I'll only use on special occasions. Phenibut and picamilon are also on this list. I also read that it can help connective tissue and varicose veins. That's cool too. I don't know if this would apply to butcher's, but Magnesium has been shown to prevent tolerance with Adderall. Maybe magnesium can help with other substances??

Also, adrenal issues in itself is not the root of the problem. Something else is causing this. I also believe I have Addisons. For me, I think the problem is mercury toxicity and the Dysautonomia itself, which was caused by Epstein Barr virus when I was younger.