jangle

Well I got my lab to send my stuff to the mayo clinic - im running their autoimmune dysautonomia panel.

Dr vernino claims that up to 25% of pots patients test positive for a3 nicotinic receptor auto antibodies in serum. Autoantibodies cannot travel through nerves, but inflammatory cytokines can inflame tissue targets while beingnormal in serum. Aag is associated with pupil abnormalities and autonomic storms. Usually monophasic or relapsing/remitting.

Dr vernino also suggests that beta 2 receptor anti bodies may occur in pots. Other sights are being investigated

Thanks for the information. Do you have a source I could take to my doctor about the 25% a3 nicotinic receptor auto antibodies?

I called and they said its a year wait for grubb so kind of put me off for now..

Are you serious? A year? That's just depressing. I guess I really am on an island, I'll see about other POTS specialists.

I have had an ANA at 1:80 and then at 1:160. I've had positive Hashimoto antibodies. I've had positive anti-gliadin antibodies. I've been tested for antibodies to insulin due to my hypoglycemia, but it was negative. And that's just the ones that have been tested. I'm really curious about these ganglionic antibodies.

I too hope they dig more for our antibody. It seems something is going on.

Also POTS seems to develop after a virus or pregnancy, classic triggers for autoimmune illnesses. In my case I had minor symptoms of POTS most of my life, but after I fell ill with a long case of bronchitis my POTS became really bad over the course of a few months.

I remember doing an ANA thread a while back and found quite a significant percentage of people had positive ANA's. It's said something like 5% of the general population will have a positive ANA, so it would seem unlikely that we would randomly have so many positive ANA results.

Ok, so now you got me thinking about this again. Here's another article by the same people comparing seropositive vs. seronegative AchR autonomic neuropathy patients. So testing negative definitely does not rule this out.... wow.

CONCLUSIONS

Although a positive result in ganglionic AChR antibody testing is useful diagnostically and guides specific treatment strategies, some seronegative patients have a clinical course and features that are compatible with AAN. Furthermore, some individual seronegative patients respond to immunotherapy (P.A.L. unpublished observations). The frequency of idiopathic autonomic neuropathy will likely shrink as other autoantibody specificities and neuronal antigen-specific effector T lymphocytes are discovered.

http://archneur.jama...rticleid=785281

Very exciting, especially as I was reading the discussion they mentioned that these type of auto antibodies seem to interfere more with the parasympathetic nerves (the ganglia) than they do with the sympathetic nerves (the adrenergic nerves). This is reflected in my own lab results which documented that I have parasympathetic dysfunction, and I likely have hyperadrenergic activity. This is because the parasympathetic nervous system normally inhibits the sympathetic nervous system, so if the parasympathetic nerves (ganglia) are dysfunctional, then you'll get an overactive sympathetic system.

As for the specific autoantibody the ACHR might not be the relevant one to POTS, although it has been shown that those with lower levels of ACHR are the ones who get POTS instead of the full blown autonomic failure.

In my own case I do think there is an autoimmunity issue going on. I have a positive ANA (1:80) which is admittedly small, but I also have Raynauds.

Now seriously, what are the odds of having Raynauds, a positive ANA, and autonomic dysfunction and not having some type of autoimmune issue going on? I seriously doubt it.

Right now I'm still feeling better than before I started exercising, but this past May I got hit with just this awful fatigue like feeling and a significant amount of lightheadedness has come back. I've been sleeping a lot during the day but I don't feel rested. Just been feeling pretty awful lately.

also there is speculation that the autoantibodies can be in the nerves (not in serum) and so wouldn't show up in a blood draw.

Now that's interesting. Where did you read or hear that? I'd just bring a print out of the panel from the Mayo Medical Labs website and ask your Dr. if you can have it done. I brought my prescription to LabCorp, had blood drawn there and they sent it to Mayo. Link if you need it:

http://www.mayomedic.../Overview/89904

It's in this article, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2637993/

It would seem to explain why some members here responded positively to prednisone or other autoimmune treatments.

My internal medicine doctor is thinking about referring me to Dr. Grubb. My insurance said they will cover all tests etc. which honestly I wasn't expecting.

Will Dr. Grubb test to see what type of POTS you have? Ex: MCAD, hyperadrenergic, or autoimmune.

What type of treatments is he willing to do. I.E. if you do have autoimmune will he try IVIG/Plasmaphoresis. EPO treatments for low blood volume?

Etc. etc. basically will Dr. Grubb do everything possible to get you better?

Ya that's what I was wondering. I'm going to my internal medicine doctor, I'll ask if she knows how to set up such a lab.

I saw a study recently that up to 15% of POTS patients have the post ganglionic ACHR autoantibodies. That seems to be a big one, also there is speculation that the autoantibodies can be in the nerves (not in serum) and so wouldn't show up in a blood draw.

Of course this has probably been discussed ad nausem already.

I'd like to see if I can get a test for the various known autoantibodies that can cause dysautonomia. However, due to the fact that virtually no physician in my area has heard of POTS, I'm not sure if these tests can be done in local labs.

I was wondering if anyone has any experience with this?

My internal medicine doctor said she would be willing to refer me to Dr. Grubb. I'm sure he would do the testing, but I'm also sure his wait list is >6 months.

Wow, professor of anatomy and physiology! That's very interesting, I myself am interested in medicine and the various subjects relevant to that.

I can relate to your frustration about the lack of knowledge in regards to the autonomic nervous system. I looked up an edition of Grey's anatomy and I couldn't find much on the vagus nerve or the parasympathetic nervous system at large. Online there are articles but still seems quite superficial, it's like a largely untouched subject. There are various studies testing neurotransmitters on animal PNS and that's what I've been using largely in trying to learn more about it. Still sparse in details and really wish there was more research.

Jenglynn have you asked your doctor about fish oil supplements? Massive amounts of fish oil have been shown in studies to sustain brain function after concussions.

Hey puppylove, ya I know this particular period of your life is just.. well not much fun at all.

I'm about to start calcitriol as my heart rate is still indicating that I have POTS. I'll let you know if it helps.

They have some of the best doctors in the world, she's in good hands.

I shall pray for her.

Interesting that you also mentioned that your levels were taken while standing. I have to wonder about other people's reports if they were taken while standing or not.

As for me I don't think I'll get a doctor to actually measure my angiotensin ii levels, and realistically speaking that is something that can only be measured by a well trained and experienced technician, which I believe only exists in research settings/specialized areas.

Jangle,

I've said so many times here how inspiring you are. And I love the fact the came to the board to share your success. You put that much hard work, your whole tachy heart, and persistence- most people could succeed at anything.

My question is this: Are ALL forms of POTS "cured" with exercise and does it take it away forever or do you have to continue the exercise forever?

I know whenever I say this- I probably get lots if eye rolling and "whatever's". In the state I am now, I could not walk from my bed to the door. I've tested this theory by the way- more than once- and after so many concussions, preventing future brain damage is top priority. I do wear a helmet but can still get damage. I feel completely disabled. I'm still having 5+ syncopal spells a day at Keaton. This is crawling or even wheeling my rolling walker with the seat. I have to force feed Abd drink. Bladder is non functional. Kidneys are only at about 40%. Thyroid is completely out if whack but no one worries about that. Im extremely hyper if you look at my TSH- .02 and T3 and T4 are hypo. It's crazy. And I've lost about 50-60% of my hair I could go on and on- but the type of exercise, or even the ones who "take it slow'' is out if the question- for now. I do leg exercises in bed and arms w/ resistance bands. Right now, I'm in a very nasty relapse. I can't do hardly a thing.

I can't even get out the door for the last several days. Do you any suggestions for someone like me? Have you ever seen someone in my condition get better with exercise? My only rule is no head injury risk. I can't take chances there. Not with the dysfunction I already have.

Thank you again for taking the time to update. You and others like you on the board ( Lemons, Issie, etc..) do so much for raising the hope of those of us who can't even imagine being at that point. I'm do proud of you guys!!!

Jen

Certainly I can say that probably not all forms of POTS can be cured with exercise alone. TXPOTS hasn't relapsed, she took her exercise regiment down from what it used to be. As for me I'm still going full tilt so I won't be able to respond on my case. Rama relapsed despite exercising.

It's variable certainly I don't know what to ultimately say other than in general it seems like exercise improves people over the long term and really that's good enough for me and I'm sure everyone here!

You are an inspiration as Issie has said, but certainly I hope the doctors find something A LOT better than exercise alone for you. I'm talking some actual hormone/antibody/or some other physiological thing they can correct and get you better soon.

Hang in there

Yes sarahm, the study your doctor was referring to was the one done by Dr. Levine a while ago. It is slightly variable how much time is required before you start seeing meaningful results, for me it was ~3 months. For TXPOTS it was many months and it took her 18 months to fully recover.

But I do have to say that walking didn't help me, it was only when I began jogging and jogging fairly long distances that I started to improve. TXPOTS was running 8 miles 4 times a week. Right now I'm running about 6 miles 4 times a week + all the other fun fun in the sun workout stuff.

Wow I wonder the odds are of someone else having POTS in your school?

I think I could actually calculate this probability, it'd be like calculating what the probability of someone having the same birthday in a room. I just forgot how to do that calculation.

As for your question I can't see how it could hurt, but I can't see how it could help either.

So basically he can dump you anytime he wants, treats you over the phone, makes you do all the billing, and you're liable to getting fed dog chow.

That's interesting, I remember reading on some earlier posts that some people with SPECT scans showed mild global hypoperfusion. Yours seems to be only in certain regions of the brain, and I wonder if those regions are where the peripheral nervous system innervates the brain.

It'd be nice if researchers did a clinical trial of SPECT results with POTS patients because I'd like to know if it is mainly global hypoperfusion or regional hypoperfusion we suffer from.

Ask your doctor about exercise,

Dana you might want to try the elliptical, I notice my HR is an average of 20-30 bpm lower on the elliptical than during jogs.

That's weird that you have a much worse reaction to having high hr/bp than I do. I was routinely hitting 200+ bpm during my exercises and I wasn't getting the crashes you were describing. I don't write this in the sense of contradicting your experience but rather just acknowledging that POTS has a heterogeneous presentation. I wish I could figure it out and explain why people get those crashes and others don't, but I feel like there isn't enough data out there to make a meaningful conclusion from the observations.

Ask your doctor about exercise,

The elliptical is ok certainly, but make sure to set the resistance level fairly high so that it feels like jogging. Since you're essentially gliding you won't have the impacts on your joints like jogging causes.

Also a good strategy is to not do just one type of exercise, mixing things up allows the relevant regions to regrow. On that note, giving yourself breaks is a good idea. Starting off I averaged probably 3-4 workout days a week, so I wasn't working out 7 days a week.

I love exercizing I think I've said that often enough. Still I know it isn't for everybody no matter how hard we try. There are some of us that really can't make it to work towards 50 minutes of jogging. I've been there myself and tried VERY hard. After I was on a well working combo of meds I could slowly build up but even now (1,5 years later) I def can't do 50 minutes of jogging. I'm perfectly fine with that, I'm happy I came this far and I keep trying cause exercizing makes me happy. But I do feel I need to say this as I remember how sad I felt when statements like yours were made in the past Jangle. No matter how happy I was/am for everyone who is doing better on exercizing I know it isn't for all of us. I'm sure you'll understand

Yes I understand, I don't want to incite frustration as I'm not sure I could even really tell the extent of pain that causes. But please don't feel like you're being left behind at the train station sort of speak. There are an infinite number of paths to a point and likewise there are many different ways to get to a state of wellness.

But I do want to help people begin and undergo their exercise regiments because there just isn't a lot of information out there on recovery. There's not a lot of information period, but certainly not a lot of information on recovery. TXPOTS is ultimately what convinced me that yes it is possible to get better and she no longer comes to these forums anymore and so it might be easy for people not to notice what she did. I'm not quite where she got to yet but certainly there needs to be role models to serve as information sources and inspiration for others.

Elfie ask your doctor about boosting your jogging periods. It wasn't until I got to about 50 minutes of continuous jogging that I noticed my dizziness and lightheadedness go down. TXPOTS mentioned to me that the stair master helped the her a lot and I intend to start that tomorrow.

Yes, I just want to reiterate the general sentiment to take it easy. Please don't try to do say 30 minutes of jogging your first go. I didn't do that, I took everything as according to the pace I could do at the time. I believe that is the best way to go, because that allows your body to acclimate and that is what you want, you want to get your body adapting its nervous system etc.

Also, fun note: exercise induces excretion of something known as brain derived neurotrophic factor, which contrary to its name actually has potent effects outside the brain in the peripheral nervous system - which might help in some way that I'm not sure of.