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Everything posted by Jon6945

  1. Namenda can have some real nasty side effects looneymom. Please be careful with this one. In theory it sounds great to deal with blocking NMDA receptors, excitotoxicty, pain, ect but the reality of this med is it only works on very specific problems and often has a lot of side effects that could make the problem worse. It is not at all what it is cracked up to be in most cases. For Tylers sake I hope it helps but please keep in mind it can really have some serious side effects and make things worse. Just keep an eye out for potential adverse reactions.
  2. I would try either an Antifungal, like Diflucan or Prednisone for a week or two to see if either of these help. Antifungal to address the very undiagnosed fungal infection that can trigger all sorts of unpleasant vestibular symptoms. Prednisone for the possibility of it being relate to a post infectious (post viral) syndrome that triggered an autoimmune, like a Meiners. All the other treatments are just symptom management and they won't help address the underlying cause of your problem, just mask it or make it worse. Go straight for the cause (infections, autoimmune), the other stuff is all qwackery if you ask me and leads to more problems, more side effects, more damage.
  3. I have learned just how little the medical field actually knows about certain diseases/conditions and also that our health is largely dependent on luck. Sorry if this was not as upbeat as some of the other responses but it is two of the very few things i have learned.
  4. Not able to work and housebound but my dysautonomia is part of a more complex autoimmune. Or autoimmunes (plural) I should say. Those being... Stiff person syndrome, autoimmune autonomic neuropathy and multifocal motor neuropathy.
  5. Truthfully id rather get the flu than Guiallan Barres. Also I would not expect medical professionals to properly diagnose you once you do have GBS either, especially if you don't have the most severe of cases. There are many variants of GBS and it is not always an easy diagnoses. Many times ER's will send patients home that are partially paralyzed and ask them to call a neurologist and deal with it as an outpatient. If you vitals are okay you are not going to receive help or treatment. You can easily be sent home even if that means not being able to walk out of their. And once you do not treat GBS immediately you can end up with chronic cases, CIDP, chronic motor neuropathy and very disabling and crippling neuropathy that is difficult to treat. And it is very difficult to get IVIG and those treatments. You will get much better medical support if you have the flu than you would if you got GBS. The cases of GBS and syndromes like this from vaccines are much more common than you think and I do not think the numbers being reported are not even close to accurate. Again, this is just my perspective and at the end of the day you must decide what is best for yourself, but Id like to reiterate the point that you will not easily get supportive care for a GBS variant unless your vitals and respiratory system is compromised and this is not always the case. It's just the way the system works. I've been there myslef and ended up with chronic form of GBS for many years that has left me pretty disabled and continuing to deteriorate. I would have rather had the flu 3 times over as long as it didn't kill me. http://healthimpactnews.com/2013/flu-shot-causes-polio-like-guillain-barre-syndrome-are-rates-higher-than-the-government-admits/
  6. My two cents... Never ever get these vaccines!!! They are commonly linked to the development of autoimmunes, lupus like reactions, and big time... Guillian-Barres syndrome. I have a chronic form of a GBS variant. Trust me you do not want this.... It is life changing. Not to mention it only lowers your risk of getting flu. Does not eliminate it. Another reason it is not worth the risk. This Artilce came out today. You may find it interesting... http://healthimpactnews.com/2013/flu-shot-causes-polio-like-guillain-barre-syndrome-are-rates-higher-than-the-government-admits/
  7. I am unable to comment on the mast cell issues. Don't know much about this but I wonder if it is a problem I am suffering from as well and hope to get around to testing or med trials for it. What I would say from reading your post is it is actually a good thing you were allergic to the benzos. I do not recommend taking these under any circumstances as I think it will cause many more health problems for you in the long run. I personally believe benzos are the most dangerous drug on earth and in many cases the damage they cause is irriversible.
  8. Certain infecfions "block inhibitory impulses, by interfering with the release of neurotransmitters, including glycine and gamma-aminobutyric acid (GABA). Loss of inhibition also affects preganglionic sympathetic neurons in the lateral gray matter of the spinal cord and produces sympathetic hyperactivity and high circulating catecholamine levels. Hypertension and tachycardia alternating with hypotension and bradycardia may develop". Alcohol increases Inhibitory action (GABA) and can explain the temporary relief in symptoms. Benzos can too but I do not recommend going this route. Way to dangerous
  9. In my experienxe the best course of treatment for these breathing issues is the antibiotic Erythromycin. These breathing issues are usually caused by bacteria and erythromycin is particularly good for respiratory infections as well as inflammation as long as you are not allergic to it. Also be careful for prolonged QT interval and interaction with other meds. But thruthfully I think it's a relatively safe treatment if you are suffering the problems you describe. COPD, asthma and all these so called "lung diseases" are really caused by bacteria. I also believe a lot of people with dysautonomia have chronic lung infections which causes autonomic neuropathy and subsequently pots/dysuatonomia. It all starts with infections and viruses. You will not see infection on a cat scan or x-Ray. It's opportunistic. It's an overgrowth of normal bacteria that sits in your body. The immune system is supposed to keep all this in check but for various reasons it can not which causes the bacteria to grow out of control. Even pseudomonas and other types of bacteria in the lungs is more common than you think. We are very limited in our understanding of bacteria and the way it behaves. This is the common misunderstanding in medicine right now. Docs are being trained to identity only one kind of an infection.... One with a white blood cell count or own that shows on a cat scan. While it is true these are tools to identity infection. It only identifies one type of infection, not an opportunistic one or simply a disbalance in bacteria. Just my perspective. erythromycin may be worth a shot.
  10. Glad you are seeing some improvement with Tyler. That is very encouraging. As someone else mentioned.. keep an eye out for infection and also it is a very good he is on Prednisone. You may want to keep him on it for a while after he discontinues the Plasma so you do not get any rebound antibodies and inflammation. This can sometimes happen after plasma is discontinued and prednisone will help with this. Hope you continue to see improvement. Keep us posted.
  11. Raisan, Sorry to hear your dealing with these symptoms and the dreaded N-Type. As Natops and Psalm suggested it would be good to do some CAT scans, being that this antibody can be associated with cancers. If the scans are clean then it is probably suggestive of some underlying autoimmune processs. I know this antibody is often seen in Autonomic Neuropathy and Lambert Eaton. Can interfere with the release of acetylcholine at the neuromuscular junction causing weakness. Or the symptoms could manifest slightly different for you. Doesn't have to fall neatly into one of those diagnosises. But it is good your level is not really out of range. I've tested positive for the N-Type too but over the range and also have GAD65 antibodies and GD1a antibodies. Diagnosed with acute axonal motor neuropahty, Stiff Person Syndrome and Autonomic Neuropathy. I am a disaster. Used to be a completely healthy, young, athletic, working, dating, normal etc. and then one day all these antibodies and things went completely haywire. In any case sorry to hear about the abdomial pains and other symptoms. Hope you get some answers and find some treatment to help. Keep us posted with everything.
  12. Wondering if anyone here had respiratory infection directly before their Dysautonomia symptoms started? If so, do you feel this was the trigger?
  13. Thanks for sending over the article. There is some good information in there. Glad to see the Penicillin shots are helping your son a bit and it's good you are exploring some different treatments. I would tread cautiously with the plasmapherisis if you do end up trying as it can really cause things to get worse if it is in fact a chronic infection driving the antibodies. Anytime you lower the immune system you run the risk of making the infection worse as their is nothing working to contain it. And you also mentioned Tyler gets sick often with infections, and lowering the immune system will also make him more susceptible to catching new viruses and infections. And there is also the issue of immune reconstitution syndrome and bringing out opportunistic infections. Immune reconstitution syndrome is a really tough deal and I had some of that following my plasma which has been really hard to bounce back from. Personally I do not think plasma is a great treatment for Pandas for these reasons, but I hate to be discouraging cause I have no way of knowing of course and it may actually help. Everyone's reaction is so differen. But my advice would be to take it slow if you try it. I've sent some things to Mayo and waiting to hear on an appointment date. Looking forward to it and hoping they have a better idea as how to deal with all these antibodies and symptoms.
  14. I am not on any treatment right now, but have tried steroids, IVIG, and Plasmaphereisis. I may retry IVIG again and change the brand since I had aseptic meningits the first time I tried it. The plasma actually made things worse, as I suspect it lowered the immune system too much can and reactivated the viruses and infections that caused the problems in the first place. Prednisone I have mixed results with.... it helps some symptoms and makes other symptoms worse. High doses are really difficult for me to tolerate due to side effects. Its been quite frustrating trying to get a handle on it but I am hoping I can find eventually find something or a combination of things to put it in remission. It has really become a chronic type of encephalitis with bouts of really bad flare ups just like any other autoimmune. Its good that you were able to identify these step infection antibodies. If you don't mind me asking, where did you get this testing done? Is Tyler on antibiotics now for this?
  15. See i still get livid when I see articles and studies like this. It's !!!!!!!!!!?!?!? big time for this guy still. I wish I was able to just shrug it off like ya'll and by now none of the ignorance surprises me but still it's unfortunate to see how misguided a lot of these people are, especially these so called "medical professionals". I couldn't agree more with what Naomi said... Why are they doubt studies and putting resources into this nonsense when it can be spent on finding the physiological causes of illness? Aka the real source of illness. I just posted this same point on another thread so sorry for those that gotta read the same twice from me but it warrants another mention here. Sue I am right there with you having been misdiagnosed with my symptoms many years ago and having been thrown physch meds at me like it was a legitimate diagnose. I look at most of that stuff like quackery now. It's just wastebasket diagnosis stuff (anxiety, depression) when they can't figure out what's really wrong with you or what is really causing your illness. It's like chronic fatigue? Haha Chronic fatigue! That's a solid diagnosis. Thanks doc. You are right I am chronically fatigued and feel like **** from nothing. No pathology to my illness.... It's just CHRONIC FATIGUE" . A lot of this stuff cracks me up now. When I was younger I didn't really know better and there wasn't even really much in the way of the internet to get info from so I was forced to accept whatever I was told, knowing very well it was all wrong, but still you end up believing it cause you think you are dealing in a competent medical system. Little did I know. What frightens me most is how there are so many young kids and children going through legitimate medical problems, Dysautonomia or even worse, and they are getting fed lithium and luvox because they haven't been referred for the correct testing and/or the goon docs they are dealing with have not informed them that anxiety and depression and those things are almost definitely being caused by some underlying medical issue. That it is a symptom and not a diagnosis. I can only hope the internet will continue to alleviate this problem and at least allow people to not be so blindly led by the ignorance. Cause it can really be damaging to be misdiagnosed and treated with the wrong meds; especially all the pysch crap.
  16. This is good info. Thanks for sharing. I've had autoimmune encephalitis among other autoimmune neuromuscular conditions over the last several years so I understand how difficult it is to deal with.. Have tested positive for GAD65, N-type Calcium channel and GD1a antibodies which can all cause encephalitis, neuromuscular junction disorders, and many neurophyschiatric symptoms. I've tried many treatments but have not had much success. I too believe it is triggered by an infection, mostly viral and it is unfortunate we do not have more sophisticated testing and Antiviral medications available. A lot of money and research is spent on symptom manangemt medications which have a place in medicine, but in my opinion the entire medical community is missing the boat on all this... More than 3 quarters of autoimmune diseases are from Chronic viral infections that lie in nerves and tissues. I suppose if they created good antiviral testing and meds than their would be no need to fill your prednisone or mestinon prescription every month. I hate to be the conspiracy guy and maybe I am wrong but it just seems odd to me that we are not further along with the viral stuff when most of these conditions are actually from viruses. If you get to the source of a problem you don't need to take 6 different symptom relief meds and 3 more than manage the side effects from the other meds. In any cAse, thanks again for sharing.
  17. This thread it a bit old but I wanted to bring it back and say that I too have a major sensitivity to medications. What "lejones" said in the very first post on this thread is exactly how I experience the sensitivity... its so bad that I have to lay in bed for 24 hours till it is completely out of my system. This goes for almost all meds. Sometimes it starts out okay, but by day 3 or 4 I have this reaction. I was wondering if anyone else had any insight about what is going on in our bodies that makes this happen, and if there are any suggestions into helping it. Its seems like my biggest problem is not actually the Dysautonomia and the Autoimmutne problems I have, but rather the inability to tolerate medication, which makes it impossible to recover from this illness.
  18. Zoloft and other SSRI's actually reduce Seretonin levels. They uptake Seretonin but because there is more Seretonin in the synapses the brain and gut end up producing less. If your son were to go off the Zoloft he would then begin producing more Seretonin and his levels would go up.
  19. My vitamin d levels were low.... 25 on the 30-100 scale. I tried supplementing with d3 pills but I felt really sick, fatigued, and depressed from them which is the opposite of what I would have expected it to do. Everytime I stop I feel better. When I start them again I feel sick. After doing this many times I have accepted the fact that the supplement makes me sick. Sunlight seems like a much better source and doesn't make me feel sick but doesn't get my levels up. Does anyone know exactly why people with dysautonomia have low D levels? It really amazes that in 2013, almost 2014, researches and docs can not identity the role of this hormone in certain conditons and how to deal with it. I don't believe supplementing or just taking it is the answer for a lot of conditons and would argue that it actually makes a lot of conditons worse. You would think we'd be further along in this stuff but it is what it is I guess. Like most medical stuff it's a complete crap shoot. Go figure?!?
  20. Try 2 advil and a good brand Probiotic together. It won't work miracles by any means but it may help a little. Sounds silly, but it actually helps me more than most of the junk I have tried and I have been trying meds, supplements, and treatments for this condition for many years. I believe my dysautonomia may be from an autoimmune that I got from a virus or infection. With that said, putting good bacteria may be crowding out the bad bacteria/viral antibodies which is slowing down the immune system and in turn is allowing the autonomic system to regulate itself better. In other words, the good bacteria is confusing the immune system back into thinking you don't have the virus/infection anymore. Good bacteria over populates the bad bacteria. Antibotics could do the same thing but more or less in reverse fashion . But probiotics are safer anyway. But this may only be helpful if you believe you have an autoimmune pathology causing your dsyauntonomia or you believe a virus or infection triggered it.
  21. I can very much identify with the breathlessness, gasping, numbness/tingling, muscles locking up, and feeling like I am going to float away. My entire body and existence feels very numb and almost unreal. I used to have this symptom once in a while, but now it has worsened to the point where I have it pretty much all day and night. It is without a doubt one of my worst symptoms. I believe it to be exactly what Chaos said above... imbalance in CO2 and 02 levels from the dysautonomia. I too was told for many years it was anxiety, depersonalization and all this nonsensical stuff, but I always new it was related to problems with autonomic neurologial and neuromuscular function. Finally 15 years later I have been diagnosed with dysautonomia and a neuromuscular autoimmune condition. But still, despite the diagnoses, I have been unable to find treatment that effectively manages my symptoms. Very frustrating, I thought supplements that increase mitochondrial function might help..... stuff like Acetyl-L-Carnitine, Alpha Lipoic Acid, and COQ10, but I have never really had any luck with those. I always just get weird side effects and have to stop taking them. But if anyone else has an idea how to deal with these symptoms I'd love to here some ideas. The breathlessness *****. Its just like i can't get rid of the CO2 in body and therefore can not get any fresh 02 in. So its like choking on stale air all day. And no matter how much breathing excerices I do, it doesn't change it and doesn't even help much. Probably cause these are suppossed to be autonomic functions and you can't really force autonomic function. But I think I start hyperventalating because my body is saying... "i need fresh 02" but my neurological system is not doing what it needs to do to get it. So its a push and pull all day long for what my body needs and what is capabale of doing. Seems like brain damage, but I really hope it isn't!
  22. Has anyone here tested there Phenylalanine levels? This is an amino acid that is used for the production of dopamine, norepinephrin and ephinephrin. I have tested significantly low (below range) in both a blood test and a CSF test. I believe this may have some significance to having dysautonomia and POTS due to the fact that norephinephrin is involved in regulating autonomic functions. I'm not exactly sure how this would play a role but my guess would be that my body already has too much NE, so my body is compensating for this by reducing the Phenylalanine levels. But not really sure at all so if anyone has anything to share would love to here. I tried phenylalanine supplements and it made my symptoms much worse so I don't think taking the supplement is the answer.
  23. I agree, Viruses are huge cause of all this, but we have not yet developed very good diagnostic tools for identifying them. And the few antivirals we do have (valcyte, valtrex and a couple others) carry hefty side effects. I'm hopeful they will have more in the future and some better diagnositc tooling out there for them. There are thousands of viruses and post-viral conditions and just a handful can really be screened for. I believe this to be a major causative factor of many of these so called "autoimmune diseases". They are really just chronic viruses causing immune system dysfunction. They may not really even be active (IGG as you say) but they can still cause immune system dysfunction because they are still in your body. Lerner has done some real good research in this area. I'd be very interested in hearing anyones experience with anti-virals on this forum and how it affected their dysautonomia. Valcyte anyone?
  24. Also I'd just like to add that I think people should tell doctors to shove it up if they act dismissive, arrogant, rude, etc. I've seen far too many horror stories of people getting walked all over by there doctors and it breaks my heart to see sick people getting treated like cr*p for no reason. I believe our society has been too accepting of the attitudes many doctors take with their patients. Its completely unnecessary and obnoxious . If your going to get treated like this, I would not hesitate to tell em how you feel, and find a better doctor who cares and has respect for their patient. Its the only way to change the system. This the only profession in 2014 that still treats people like animals and feels threatened by other people's knowledge. Many of these folks act far too arrogant for a profession that really doesn't know that much at all. Additionally, many of them do not acknowledge the limitations of their tools and don't admit when they don't know the answer. Instead they are dismissive and disrespectful. That kind of attitude is dangerous because it can prolong unnecessary suffering. I don't believe there are many other professions that collectively takes on this type of attitude with their clients. I am not sure why the people in this field feel entitled to act like this. There are many other professions out there they go through many years of school and studying and do not act like this. I am not suggesting all doctors are bad people, I'm just saying the kind of behavoir many of them demonstrate is very childish and there are so many stories of people getting treated horribly, especially from Neurologists. This is ironic for a field that means so much to society and our lives . Its just one story after the other and its disturbing. Tell these people to **** Off if thats how they are gonna treat you. They don't know enough to be acting like this and even if they did actually know a lot more, they still shouldn't act like this. Sorry for my vent but I feel like this may be the best advice I've ever really offered on any forum!!
  25. What exactly causes POTS and Dysautonomia is a great question and I believe knowing the pathology behind the condition is necessary if you really want to get well. Thats not to say you can not get help by managing symptoms but it makes a big difference if you can identify the pathogenesis. Most doctors will not entertain this though because they simply do not know what causes it and they don't want to admit they don't know (typical MD arraogance and ignorance), so they will pretend their exists no source to it, which is entirely untrue. There is absolutely no doubt something triggers this condition. With that said, I would think these would be possible triggers. There may be other causes, but my research and experience points to the following... 1.)A virus or infection 2.)CNS Damage or Toxicity from medications (Probably the biggest one in my opinion!) 3.)Autoimmune conditions (which would likely develop after a virus or infection) 4.)Metabolic Abnormalities (for example improper metabolism of amino acids required for synthesis and catabolism of catecholamines, seretonin, gaba, glutamate, etc.)
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