dsdmom

1. With POTS, do you think you will be able to do a long hike without making your symptoms worse? At one point during my illness I was very in shape and if this was not pushing it for you then your body was ready for it. 2. With POTS, does Xanax-type medication make your symptoms get a lot better or even go away? No, Xanax does not make symptoms go away. ussually makes them more pronounced. 3. With POTS, is it possible to work out 1-2 hours a day and feel fine during the workout? Feel fine while working out. It's after that i feel horrible. 4. With POTS, on days where you feel bad even when sitting or lying down, does standing up and walking around make it even worse? Yes, being still is difficult. Moving makes the blood move so you feel better. Although lying down is best! 5. With POTS, do stressful events or situations make your symptoms worse? Yes!

I think we have to remember that both POTS and CFS are syndromes - just names for a collection of symptoms. Technically they could be the exact same thing just labeled differently by different doctors. Fibro is also just a set of symptoms, not a disease. Without a known etiology you can label it 'purple syndrome' and it wouldn't matter. Without an underlying disease it's just symptoms... Now that said, there are some people who have dys for genetic reasons and would not fall into the same category.

Mary P YOu mention you were on a low dose of mestinon - what was the dose? It could be that you need to start even lower and build up. I take the pediatric version which is a liquid so I can do very small dose changes. I am currently almost at 24mg 3/day but I started at 10mg/day.

Erik, I think they are still trying to figure out causation - so do not know of any studies showing that infecting an animal with xmrv gives them cfs. Don't know how you would measure that really... But that being said, I did come across something that said that "What's more, some characteristics of the virus match up with the syndrome's symptoms, she says. Viruses related to XMRV can cause blood vessels around the body to leak, a common symptom of CFS. Mikovits also notes that in mice, a protein that coats the shell of the virus causes the animals' nerves to degenerate. A class of immune cells called natural killer cells, which are thought to go wrong in CFS, are known to be susceptible to infection by the virus." Maybe the nerves degenerating is akin to neuropathy?

What happened when your daughter first became ill? Was it following an illness of some sort? It's very probable that an infection caused her neuropathy. If she falls into the post-viral group, most likely she won't be getting worse and hopefully over time will get better.

The idea is that they can start studies now with current anti-retrovirals that are currently used on HIV patients. However, XMRV is a less complicated virus than HIV and there's hope that different, less toxic drugs could be devloped. Cat lady, as far as the VIPdx test goes - I also am awaiting my test kit but I also spoke with the woman there for a while and found out that in a few months they will also be testing serology (antibodies) which will be important. It may pay off to wait a bit before being tested since you wouldn't want to pay $ twice. And really no treatment is going to be available right now unless your doc is going to throw you on AZT which I doubt.

I've read a ton on this as well and am always so put out by any conspiracy theories about vaccines. That is just ridiculous. No doubt drug companies are in business for profit but before vaccines can emerge treatment options will be developed first. And isn't that what's important here? Does anybody think HIV patients are worse off because drug companies got involved and are developing vaccines? I don't think so. They are being treated and that's what's important.

Welcome! Here's my stab @ your questions... 1. Do cold and the flu et cetera make your symptoms worse? Especially the tachycardia? Yes, yes and more yes! Any virus can do this - not fun! 2. Have any of you had recovery and relapses in POTS (I feel like I have)? I don't think I've ever totally recovered and relapsed. But I have done much better with some symptoms for a while and worse with others. It can wax and wane. But overall I'd say I"m better than I was 3 years ago. Still not functional enough to work but it's progress nonetheless. 3. Without getting to personal, Do any of you take the birth control pill without any problems? I personally can not take the pill but for medical reasons unrelated to dysautonomia. OThers on here do well with the pill to supress their periods because a lot of us feel worse around our period. 4. I have read quite a few of you say you have Ehlers-Danlos syndrome. Is this a concurrent disease with POTS (I have never had it mentioned to me)? I don't have EDS but yes, I have heard and read that there is some connection. You'd have to do a search on this site - there are many people here who could give more info. 5. Do any of your have problems with maintaining your blood sugar? Or, have your tachycardia exacerbated by eating to much sugar? I definitely have had weird hypoglycemia issues since developing dysautonomia. Sugar can make my symptoms much worse. I have since cut out grains and sugars and eat high protein, high veggie diet. I can't remember the last time I felt hypoglycemic. 6. Any good drink recipes for keep up your blood volume (I am getting so sick of gatorade!)? I drink V8. That always helps me.

I'm interested in knowing how others have fared with antivirals, too. I think I have shingles - seeing the doc in the morning - and if so, will be put on antivirals. very nervous how my body will react.

Wow, thanks for the info melissa. I'm in MA so we don't have medical marijuana available but I really did not know about all the different strains, so that's just good info to have. I hope you continue to feel well on it.

I have tried craniosacral therapy and it has not yet helped. It has made me have terrible ans flares each time I have had it done - they tell me this is good. But since I was bedridden because of it, I can only think I am super super sensitive and it may take me a long time to see any benefit from this. Since I don't ahve tons of $, this is out for now!

Just an fyi, align has milk protein in it. It does not contain lactose, but if you are DAIRY intolerant, I don't know that I would use this.

Personally I'm a little skeptical that a vit D deficiency is THE cause of all your problems. I think a deficiency can definitely contribute to your symptoms but it seems to me like she is over simplifying things and not listening to your issue with even TAKING the supplement. I empathize with you there - ccan't take any vitamins/supplements because of severe GI issues. People think I'm nuts but they aren't the ones dealing with the pain, etc! Of course it is important to keep your levels up so I would try to do what you can, but I'd bring this to the attention of your neuro if you have one.

Have you been diagnosed with autonomic neuropathy? My guess is he meant that diabetes can cause autonomic neuropathy, which in turn can cause POTS symptoms.

Lenna, I don't remember if I posted this to you before or not, but America's Comounding Pharmacy in Newton has a great resource available. Irena is their 'nutraceutical' specialist and is actually a pharmacist from Germany (I think Germany). Anyway, she helped me with licorice a couple years ago (I couldn't tolerate it) but she has a TON of knowledge of this sort of stuff and may be worth meeting with. Their number is 617-527-1563

That's very interesting. Thank you for sharing. My doctor does not want me getting the shot because there seems to be still so much unknown about it and with my possible autoimmune issues he doesn't think it's smart. But I guess only time will tell how people react to it!

Thanks for the update. I wish it were going to be available before 18 months. I was supposed to be evaluated to be in the study but they closed it early so I wasn't able to make it. But, they hadn't mentioned anything about coming off Wellbutrin which is something I definitely would not have been able to do so I guess I wouldn't have been able to do it anyways. Is wellbutrin contraindicated or is it just that it may skew the study results?

Welcome - I am so very sorry for what you and your wife are going through - my heart truly breaks for you. It sounds horrible. As someone else who has been through all the big hospitals in Boston I am sorry to say I think you may need to go to to some place like Mayo for a team approach. Yes, Boston has great hospitals and doctors - but my experience is that they do not approach things in a way that may help your wife the most since she clearly is a very complicated case and needs a team of doctors who are communicating about her case. Dr. Grubb is supposed to be great but his specialty is clearly dysautonomia/POTS - if your wife has other things going on they need to be uncovered/investigated as well. I wish you the best of luck and hope you find some answers/relief soon.

I've experienced higher BP from being in pain and was told that was a normal physiologic response.

Good question - looking back, I really don't know! My family (immediate and in-laws) and friends certainly were not the driving factor. I think they all thought that after the ordeal I had been through I should have been 'fine' and that I was just making a big deal out of nothing. I guess I just wanted answers because I knew I was not right. I'd have to echo what someone else on here said - my psychiatrist was really the one person who truly believed that I had something physical going on. Maybe just having that one person believe you makes a difference... And when I did finally get to the right specialist, I dragged my husband because I wanted him to hear the diagnosis - that I WAS right. (People, him included, were sick of my 'research' online). I wanted to yell it to the world that I was right, I was right, I was right. And by that time, nobody really cared...

I had life-threatening complications following the birth of my daughter in 2006. Following several surgeries, and ultimately a hysterectomy, I started having the tachycardia, low bp, etc. Over the next 10 months I developed all of the other wonderful symptoms (fatigue, gi, etc) and went from dr to dr - pcp and several specialists, including cardiologist and neurologists. PCP thought I had anxiety and needed to 'work through it.' I researched everything I could online and was brought to dinet.org. I found a dr listed on the site and that's how I FINALLY got help. If I had left it up to doctors it wouldn't have happened.

Do you have more information about what, specifically, the 5 antibodies are? Other than AChR? Or could you find out for us? Thanks!

I was just prescribed a very low dose of doxycycline for rosacea. I took it 2/day on Saturday and only once yesterday because my reflux was really starting to act up. My GI system is a mess and I thought i would let things settle down before trying again. Well this morning I had breakfast as usual and then got excruciating stomach pain. Wasn't sure if I was going to go to the bathroom or vomit - I ended up doing neither but just lying down in pain. Took some tums and that seems to help a little but I guess I'm wondering why this is happening if I stopped taking the drug yesterday morning. Could it be that it was just starting to affect me? I ate dinner fine last night... Is this something I need to call my dr about today (holiday) or just hope it goes away. I'm nervous about taking my prednisone right now since that is tough on my stomach as it is but HAVE to take that or I'll be in a whole other boatload of problems. Anybody have any experience with antibiotics causing pain AFTER you stopped taking them? How long before your tummy felt better?

That doctor was completely out of line. Like it or not, this is her JOB and part of it includes being on call at times. That's part of the territory and it sounds like she needs a new job. I hate when doctors pull that kind of crap.

I'm going to second yogini's post about autonomic neuropathy and blood pooling. Have you ever been tested for this with a nerve biopsy? Because if you have autonomic neuropathy, you're going to have blood pooling - and it wouldn't be because you were 'deconditioned.'