Austin Posted June 1, 2009 Report Share Posted June 1, 2009 He spent over an hour and a half with me. Couldn't believe the time he gave me. He has his own theory on POTS and believes it is autoimmune or infectious in nature. I guess I should restate that, as I have read that these theories in articles, but this is his only two theories.He wants me to have some special PET scan of the heart that is only done at the NIH. While he is trying to set this up, he is writing my insurance co. and trying to get approval for IVIG (Imunoglobulin). He thinks my immune system has mistakenly turned on me and by giving me this IV medication, it will fix my Autoimmune system.He told me 1/3 of patients respond to this therapy. He believes the 2/3 that don't respond perhaps have some type of infection going on that doesn't produce fevers, but all of the symptoms I presented to him.So, he said that if the IVIG doesn't work in about 3 months or so after starting it, than he would switch me to long term, high dose antibiotics. I like the aggressive and assertive nature of this Dr.I left with a feeling of hope. I just can't wait to start on this medicine. It could take a while if the Insurance co. puts up a fight. I have BC/BS, so he said that they arn't that hard to deal with.What are your thoughts on this folks ?Austin Quote Link to comment Share on other sites More sharing options...
Heiferly Posted June 1, 2009 Report Share Posted June 1, 2009 I have heard autoimmune as an explanation, but have not heard of people being put on that kind of antibiotic treatment with the presumption of an infectious agent. I would definitely want to know the risks involved before trying anything. Quote Link to comment Share on other sites More sharing options...
yogini Posted June 1, 2009 Report Share Posted June 1, 2009 I live in NYC, where there are some of leading neurologists in the country. It is always good to see smart drs who take their time with you, but I have found drs who specialize in POTS to be most helpful in my treatment. Have you tried any of the more traditional therapies for POTS? I would go for beta blockers, midodrine, etc. before trying IVIG or antibiotics. Quote Link to comment Share on other sites More sharing options...
pat57 Posted June 2, 2009 Report Share Posted June 2, 2009 My RA, GI and PCP think my NCS is autoimmune secondary to long term hepatitis C. I never mentioned this to the EP. That's pretty funny. Quote Link to comment Share on other sites More sharing options...
dsdmom Posted June 2, 2009 Report Share Posted June 2, 2009 I've spoken to my neurologist about IVIG but we're waiting on results of some antibody testing before going forward with it. I would be surprised it the insurance company would cover it without test results to back it up. But, if they do, please let us know - because it's somethig that I've been really interested in pursuing!The antibiotic route is interesting - I've never heard that as a treatment. Who is this doctor? Quote Link to comment Share on other sites More sharing options...
goldicedance Posted June 2, 2009 Report Share Posted June 2, 2009 What other route had you taken before this more radical approach?I'm sure we would all be interested in knowing.Where is your neurologist located?Thanks and good luck Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted June 2, 2009 Report Share Posted June 2, 2009 I am surprised that learned practioners of medicine can talk definitively about the causal mechanisms of POTS so catagorically when the current state of research is far from definitive. There is EVIDENCE that there might be an autoimmune and/or inflammatory response behind POTS in the majority of cases (partial autoimmune neuropathy suggested by Prof Blair Grubb)but autoantibodies were only found in around 13% of patients. Unsurprisingly, there is actually NO evidence or published research study that suggests that an ongoing infection is a causal mechanism for POTS or NCS. That being said, this doesnt mean that there isnt, but just that there is no evidence that there is. So prescribing treatment without any evidence does not equate to good doctoring. No leading specialist in POTS has ever suggested this as a causal mechanism and it is not currently being investigated or even implicated. Recent evidence has implicated a variety of other potential causal mechanisms, most of which relate to endothelial cell disfunction (ECD). Personally, the presentation of POTS in many patients to my mind suggests an autoimmune or autoinflammatory response - the waxing and waning/arrest and remission presentation is common to most inflammatory disorders. Please update us on how the immunoglobulin treatment goes for you. Do you have a hyperadrenergic presentation? Quote Link to comment Share on other sites More sharing options...
firewatcher Posted June 2, 2009 Report Share Posted June 2, 2009 I have been on mega-doses of antibiotics for as long as six weeks in an attempt to get rid of a sphenoid sinus infection (the sinus cavity that sits under the pituitary gland.) It did not effect my POTS in any way that I could tell. I agree that a the root "cause" of all POTS is unknown, and anyone who says your POTS was caused by ______________, is still speculating. Be careful! Until more is known, we are all guinea pigs for the field of science. Quote Link to comment Share on other sites More sharing options...
futurehope Posted June 2, 2009 Report Share Posted June 2, 2009 I second the notion that IVIG should not be the first route of treatment. If you read up on it, there can be side effects to the IVIG, and it is very expensive. If indeed they find an autoimmune disorder, I don't even think that a doctor uses IVIG as a first line of defense.Proceed with caution is my advice. I second what the posters above me said. Quote Link to comment Share on other sites More sharing options...
april abbott Posted June 2, 2009 Report Share Posted June 2, 2009 It is nice that a doc spent so much time with you and has an interest in POTS. However, my only concern is that he seems so sure about the root cause, despite there is really no evidence to point in that direction. As others stated, there are theories, yes, but no hard evidence. His treatments may be aggressive and expensive, and I fear, can only be deemed experimental in nature for this type of diagnosis. He also gave a claim of helping 1/3 of patients. What patients is he talking about? Was this a study done by him or is it published in a scientific medical journal? I would want A LOT more info. on those statistics before getting my hopes up. It really seems like he aims to cure you, in which case you may be in for a disapointment. You said he thinks he can "fix" your immune system, and he believes that this is the overall cause of your condition, so please, investigate this a little further. Ask a lot of questions and do some research.We're not trying to bring your hopes down, we just want you to be safe and realistic. I can't tell you how many times I was misdiagnosed, given the wrong types of meds, and had my hopes brought up, only to be dashed to pieces later. Regardless of your decision, good luck with everything, and keep us up to speed. The main thing is that you stay safe and that you are aware of side effects/complications from any potential treatment. Quote Link to comment Share on other sites More sharing options...
Austin Posted June 2, 2009 Author Report Share Posted June 2, 2009 I'm sorry folks, I didn't mention that I have confirmed Autoimmune Psoriasis. This is the reason he is going on this assumption.I am on a Beta Blocker for the high heart rate. The cardiologist didn't want to use Florinef on me as my Blood pressure holds pretty steady when standing. In fact, it does go up a little even when standing. I have never been told that it was hyperadrenergic.I have been doing tons of reading on POTS and I must say, not only is it a confusing disease to the Medical Dr.'s, but even more so to me.I have just started getting really bad Vertigo and Headaches the past few days and I don't know what to attribute this too. I have tried to take some motion sickness tablets I have hear, but they don't seem to do anything. Feels like I'm on a boat more than I'm dizzy. When I can get rid of that (it goes and comes on it's own), it seems like the headache is sitting right behind it.Thank you very much for the feedback. I have spent a great deal reading on IVIG today. From what I can see, there really arn't many side effects other than Anaphalaxis because it is considered a blood product.I don't know what to do. I have a cardiologist who only put me on a beta blocker and nothing else. I have been increasing my salt intake to no avail.If the insurance pays for the IVIG, I would go forward and be a guinea pig as this POTS has really taken away the life I had prior to it's onset.I use to be the life of the party. Now, I feel so sick all the time, I don't get out much. And if I do, I tire real real quick. It's like someone came and snatched my life away and I want it back.The IVIG won't be anytime soon I don't think as lots of hoops and ropes to get past with the insurance, but I will keep you all updated.What, if any, are alternative treatments. Other than wearing support hose, which is kinda hard for me in the summer, I don't see any other treatments out there. Please do share them with me so I can read on them and present them to my Dr.'s.Austin Quote Link to comment Share on other sites More sharing options...
pat57 Posted June 2, 2009 Report Share Posted June 2, 2009 I should say something similar. I have 3 positive (sed rate, ana and rheumatoid factor) markers for autoimmune disease ,but it is unspecified. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted June 2, 2009 Report Share Posted June 2, 2009 Here's previous discussion in IVIG:http://dinet.ipbhost.com/index.php?showtopic=10462I have a friend (not on the forum) who is hoping to try IVIG if insurance will cover it, but this has been after eliminating all other forms of treatment and progressively worse symptoms due to autoimmune autonomic neuropathy. She is very nervous about it b/c of possible bad side effects, but she feels it is her last option right now. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted June 4, 2009 Report Share Posted June 4, 2009 DOnt get me wrong, it may actually help - particularly if your type of POTS is autoimmune or inflammatory and there is strong evidence that there are at least some patients with this as a primary cause.Good luckand let us know how it goes. Quote Link to comment Share on other sites More sharing options...
juliegee Posted June 4, 2009 Report Share Posted June 4, 2009 Very interesting, Austin!!!! (Sorry you're feeling so badly though ) I have always noticed that I feel better after a round on anti-B's. I've been taking a very low daily dose for rosecea and I definately feel better. May be something there...Also, I have VERY abnormal immunoglobulins. IVIG is the only treatment available to me. My IgG is in the 400's. (Normal is 750-1,500.) Anaphylaxis would be a big concern for me as I have MCAD, which some describe as auto-immune. Are your immunoglobulins very low too: IgG, IgA, etc? Or is this therapy suggested despite normal numbers?Julie Quote Link to comment Share on other sites More sharing options...
EarthMother Posted June 5, 2009 Report Share Posted June 5, 2009 Saw an interesting article on new "drug" that may be available for auto-immune disease ...http://www.webmd.com/rheumatoid-arthritis/...immune-diseasesHopefully one day something will come up that will lead to some additional options for all of us!~EM Quote Link to comment Share on other sites More sharing options...
iheartcats Posted June 5, 2009 Report Share Posted June 5, 2009 Saw an interesting article on new "drug" that may be available for auto-immune disease ...http://www.webmd.com/rheumatoid-arthritis/...immune-diseasesHopefully one day something will come up that will lead to some additional options for all of us!~EMI'm tempted to chew on the herb! JK Not a good idea, I know.Goodness. It's hard to keep up with all this. I'm sure the drug will take years to develop. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted June 7, 2009 Report Share Posted June 7, 2009 (edited) Interesting. My doctor is often open to me trying more far out treatments but I think id struggle to get him to ok this one because the only evidence I have that my POTS could be autoimmune or inflammatory is its wax and waning, the fact it improves when im sick and the fact that I have another co-existant inflammatory disorder. If anyone wants to go guinea pig though let me know what happens Those chinese herbs are always interesting - never cease to amaze me. There is also one that works exactly the same way as mestinon I found recently. Edited July 8, 2009 by flop Quote Link to comment Share on other sites More sharing options...
EarthMother Posted June 7, 2009 Report Share Posted June 7, 2009 I wonder if the liklihood of autoimmune as culpret in POTS is more likely in those of us with other confirmed conditions that are autoimmune ... e.g. Hashimoto. Quote Link to comment Share on other sites More sharing options...
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