Birdlady

I asked my husband and this is the website he used. http://www.parasitetesting.com/ Let me paraphrase everything my husband just told me. Like everything though testing is not 100% accurate. There is DNA and culture tests. The one he had done was a culture test and this lab checks for a large number of things. Some of labs test for only 10 things which may not be helpful at all. However if the bacteria is fragile then it may die before reaching the lab and thus not culture. With DNA tests my husband said they are also good, but the lab has to have the DNA on file to find it. Basically if the DNA has mutated, then the lab won't be able to identify the bacteria or parasite in the stool. You can order the test yourself, but the results have to be sent to a doctor or nurse practitioner. It can be any doctor, so he had to sent to one of our natural doctors. He got the Comprehensive Stool Analysis Test and Swab Culture Test done. I hear you on the medical bills. Lots of ppl are mad at me right now for not paying them. It's either eat or pay medical bills and I think you know which is higher priority.

Obviously I'm not a doctor. Have you ever looked into porphyria? I'm not sure of your history and symptoms but just something I've come across over the years of my research. Your reaction to sunlight made me think of it. I know a woman on another forum I post on that has this disease and she cannot be in the sun for long periods of time. Hers is very severe and has to eat a high calorie diet with lots of carbohydrates or she suffers from the acute attacks. Your spots and itchiness after scratching could be dermatographia too. It's hard to tell because the pics are blurry, but the shaving issues could be from keratosis pilaris on the legs. Just some things to look into!!

My brain isn't working real well today either Sue. I'm worried about other things, so having a hard time focusing on this. I agree with you that our guts is where a lot of our issues begin or even perpetuate itself. Interestingly as far as gut issues go, mine are not nearly as bad as some on here. I have regular bowel movements, but sometimes too regular. I am on the looser side of normal and have undigested food in my stools at times. (Sorry TMI) If the undigested food wasn't there, then I'd think I was ok. However I still wonder because I am lactose intolerant and I have a hard time assimilating iron and B vitamins from my food. My vitamin and nutrient levels are terrible even though my diet is very rich of vitamins. I will be very interested to see what your tests show. Please post those when the results are in if you don't mind. I think we can learn a lot from each others lab results. As I said in the other thread, my husband has a very hard to kill bacteria in his gut, citrobacter freundii. If you look into this bacteria it is nearly impossible to get rid of because it feeds off of everything and can switch from anaerobic to aerobic. The only antibiotic that has been shown to actually work to kill it is not approved in the US. (This is what my husband has told me and just passing this info along) It still makes me wonder how did the body ever let something like this replicate in the body in the first place. It is probably an opportunistic infection of some sort. Chicken or egg? lol I keep asking myself that.

Sue if you haven't already made a new post, I think it's a good idea. My husband has a bacterial infection (citrobacter freundii) in his gut confirmed with stool testing. I can ask him the lab where he got the tests done if anyone is interested. This particular infection he has is extremely difficult to eliminate. Simply taking antibiotics doesn't mean you actually get rid of it and in some case I think people get worse after they come off of the antibiotics. Then I am forced to ask WHY? Why did the immune system let a bacteria float around in the system in the first place? That leads me to my theory of general immune suppression which can be from heavy metals or other environmental toxins.

wow 1000mg of niacin!? That is something. I'd look like a lobster if I took that much and likely in severe pain.

I don't have chronic fatigue, but I think I'm the odd one here. I am a bit high strung/hyper most days with simply too much energy at times. At this point in my life after everything I've tried to get myself healthy, all I have left is POTS. If I could just control my heart rates while standing, I'd feel pretty good. Unfortunately that's a huge uphill battle...haha Those who have the fatigue I really feel for you because my husband has that and it can be debilitating all by itself. Then add in POTS and other symptoms and it is a living **** at times.

Polls are really good on here. I think we should have more of them to be honest! I'd love to be a guinea pig and let a researcher test me for whatever they wanted. I have already told my husband I may donate my body to science if I still have POTS at death. Maybe it could help them figure all of this out. Maybe that sounds way too morbid? haha

Physiological doses of steroids do not make my POTS any worse, but pharmacological or immunosuppressive doses are awful for my POTS. My standing heart rates were very scary while I was taking prednisone for an allergic reaction and I will do whatever I can to avoid going on prednisone again. I was also given a large injection of dexamethasone in addition to the prednisone.

I see the original post is sort of old, but I'll chime in. My albumin has never been elevated, even before my AI diagnosis when my labs were really messed up at times. Only recently I've started taking zinc because it used to make me vomit. ugh

Same here CMRuls! I used to get migraines all the time and once I stopped ingesting aspartame (diet soda mostly) and all other forms of artificial sweeteners, I no longer get them at all.

My husband has talked a lot about the hydrogen sulfide theory and it's caused by a bacterial or yeast overgrowth in the gut. This theory fits my husband's presentation of POTS much better than anything else out there. I find the link between our guts/intestines and POTS more interesting than really any other theories out there. We all have gut issues here. There was a study done on those who undergone bariatric surgery. They were normal before surgery and about 5 months later developed dysautonomia. That's pretty telling to me and is way more interesting than some of the other theories out there... http://www.ncbi.nlm.nih.gov/pubmed/18684286 Yes, the study that my son was in last summer is designed to prove that most POTS patients have too much NO. My son, who does not have enough NO, is considered to be in the minority - at least according to the medical team at Beth Isreal Deaconess Medical Center. Which is another reason why I don't see how exercise would be good at all for a subset of POTS patients. It would just increase free radicals even more. This is all theory of course, but so is everything else that is presented here.

Yep I nearly went into shock from the bright lights. I told my husband afterward it felt like I was being tortured and under interrogation. Really scary feelings.

Yes I experienced this too. I have no idea why, but after a while florinef doesn't do anything for me other than make me waste too much potassium. Then I have to take RX potassium pills and it's a vicious cycle for me. My aldosterone was low and I really do not feel any difference when I'm on it...It doesn't even raise my BP much, maybe 5 points. I take it mostly just in the summer because I sweat a lot more and lose more salt through perspiration. I figure it should help retain a little bit more sodium. Starting on .1mg all at once must have been terrible! I've had bad florinef headaches. You were smart to back off and titrate up again. That's what I do too and helps to keep the headaches and weird feelings to a minimum.

Yes high doses of niacin will make you flush. You can take the niacinamide form which won't make you flush and some say it is actually better for you. I'm not recommending the flushing niacin to anyone here who might have issues with that. However for me, there is something strangely pleasant about it. My husband thought I was crazy when I told him this! When I flushed you could see the weird circulation issues I have in my legs. I got very strange purple, red and white patterns on my calves and feet. It was almost like it was helping to open up those veins. I took pictures, but haven't any clue where those are now. I used to take just enough to make me flush, but I just kept forgetting to take the pills so I stopped after a few months. At the start, 50mg is all I needed to flush. Then about a week later I need to take 100mg. You start to build up a tolerance where you need more and more to flush. But if you miss just 1 day, the flushing can be quite intense and even painful at times! I don't get any vaccines these days either. It's been a good 7 years since my last one. I've only had 1 flu in that time frame.

@Sue That is a pretty good stim. I've been seeing more and more results like this in those of us with POTS and CFS. It's like our HPA does not properly signal the hormones under normal conditions, but the adrenals themselves are working great. I don't know what the answer is for this though. All you could do is try HC and see if the benefits outweigh the risks. We do this with all of the other medications taken for POTS. I personally won't touch a lot of the meds some people have no problems taking at all. Yet I took HC without a second thought. haha @Lovebug those are some interesting results. The high ACTH is quite high and is not normal at all! This is why it is all so confusing and the reason why I do not believe there is a single hormone as the cause for POTS. My serum cortisol results were high too, but my saliva results were dreadful. My natural doctor went with the saliva results. The endo was right. The dexamethasone test suppressed your HPA, so you don't have Cushings. It makes me wonder why we all have such messed up hormones though. It really does not make any sense at all. The ACTH that was <5, was that after you were given Dexamethasone? If not, then I suspect the special handling procedures were not followed and they actually left your sample out. ACTH degrades at room temperature, so the vial has to be placed on ice immediately after drawing it from your arm. If it isn't, then you get really low results like that. It makes me wonder how often this happens.

Did you ever see the actual results to your stimulation test? Endos are pretty well-known to say everything is normal even if it isn't. I'd recommend getting the results in your hand and post the results here or on an Addison's forum to see what they think. Also I'd get an ACTH checked first thing in the morning too. Just make sure the lab does it right because there are special handling protocols. If your ACTH is elevated, then that's a good clue something is off. Mine was! The idea that the adrenals get fatigued is a misnomer. The problem is HPA axis dysregulation. If adrenal fatigue was possible, then Cushing's Disease would not be possible. Like you said, even though Addison's patients suffer from some orthostatic intolerance it is no where near as severe as what we have. I post frequently on an Addison's forum and they kept telling me they felt better within days of starting HC. I also felt a lot better too, but unfortunately as I said the OI is not any better. I wish! Years ago I was convinced that adrenal fatigue was my issue and I'd be better with HC. Now I'm trying to tell others that it is not this miracle cure that it has been made out to be. There is something else going on with us that is quite complex. Since you've already had a stim test done, I'm not sure what to tell you. Find an endo that is more open-minded about the interpretation of those results and the use of saliva cortisol results. I realized that I answered the electrolyte question with what my electrolytes run nowadays. Before I started HC, my potassium was always 4.5 or so and my sodium below range. Now they are both low.

There are groups who think both (high NO is the cause, low NO is the cause). Sorry if I didn't make that clear enough in my post. Lots of theories that directly conflict with one another. I was given nitroglycerin and thought I was going to die on the table. My body started to go into crisis mode. It is interesting how we react so differently.

I am on HC(hydrocortisone) for adrenal insufficiency and I can say with 100% certainty it has done absolutely NOTHING for my POTS. My natural doctor was SOO sure I would see improvements and when I didn't he wanted nothing to do with me. Pretty much POTS is all I suffer from nowadays. I have tried messing around with dose and dosing schedule for over a year now. It does not matter what I do, I still have POTS. Going on HC (hydrocortisone) is probably not the answer for most people regardless of what their saliva results say. I would rather look at stim test and AM ACTH results. If you have weird varying AM cortisol readings, then get your CBG checked along side it to see if that is elevated especially in woman. Estrogen elevates CBG which can make your AM cortisol readings or stim results look OK when they are not. There have been studies done in those with CFS and there are minimal benefits when taking HC and the risk of adrenal suppression is high. http://www.nih.gov/news/pr/sept98/niaid-22.htm Those with adrenal fatigue don't get relief from HC either. Look at all of the adrenal forums and you see they take HC and either get worse or feel nothing at all. I made a huge rant about all of this on my blog recently. If you want to read that, let me know I will give you a link to it. Even though cortisol is low, taking cortisol does not fix the issue. Those with true Addison's take HC and immediately get their lives back. It is like night and day. Now I do get benefits from HC, but as far as my tolerance for standing, it is still as bad as ever. I've tried to come off the HC many times now and I cannot, so if I didn't have adrenal insufficiency before I went on HC, I do now.

Thank you for this link. There is a subset of those with CFS that believe elevated NO may be the problem, so I find this interesting. I haven't done much research on this to be honest, but I found this link and it is worth the short read. This theory suggest that chronic high levels of NO create free radicals in the body thus damaging it. I worry this is what's happening to us because we are always in tachycardia. Our free radicals must be through the roof and we are probably constantly in repair mode. Just theory though. http://www.chronicfatiguetreatments.com/wordpress/treatments/chronic-fatigue-nitric-oxide/

The NutrEval test said I needed even more B12, B6 and Folate than I was taking. I was completely floored by the B12 because I had been taking daily injections of B12. It looks like my body does not make the active form of B12 properly (other markers seem to confirm this on my test too). I'm guessing that even though I take large doses of B12 only a small amount of it is actually getting converted into adenosylcobalamin. There is such a thing where that enzyme can be deficient or inhibited, but as far as testing for that, I'm not sure how someone would go about doing it. I don't have pernicious anemia (tested those antibodies), so it really makes no sense to me. lol At one point I was considering getting the adenosylcobalamin compounded for injections. It is much more expensive though and right now don't have the $$ to make the switch from MethylB12. I like taking the active forms of the B's. P-5-P (B6) gives me heart palpitations within about 2 days of starting it. Folinic Acid has the exact same effect too, which I just cannot understand. I can take folate (metafolin), niacin and niacinimide, B1 and B2 with no issues. The problems start off slowly, but if I continue to take either P5P or folinic acid, it will escalate and become extremely uncomfortable. Once I stop taking them, it takes about 3-4 days for it to go back to normal. I've tried about 3 times now and it happened each and every time.

I really think vaccines have something to do with these acquired mito disorders and even MCAD which has been talked about A LOT on here lately. I think they cause an autoimmune response within our bodies and then we are messed up for life. I tell my husband we all got the "soft kill", but that's probably way beyond what most people can wrap their minds around on here. There are some very evil people in the world. I had a NutrEval test done and my body seems to have trouble assimilating B vitamins. However when I take them I get severe heart palpitations and sinus arrhythmia. I just cannot tolerate them at all. B12 and folate are the only ones I can take without any issue.

I used to have high eosinphils quite often and that's another one of those things that went away for me when I was finally diagnosed and treated for adrenal insufficiency (Addison's disease). It's literally been years now since they have been high on my blood work, so I assume at this point it was somehow related to that. I think they can also be elevated in those with seasonal allergies too. I'd also suspect food allergies too. Anything that makes the immune system react. Here's what Mayo has to say about it if you are interested. http://www.mayoclinic.com/health/eosinophilia/MY00399/DSECTION=causes

Chaos thank you for posting this. Of course deconditioning doesn't cause permanent, disabling POTS. Otherwise anyone in the hospital for longer than a few weeks would have POTS and never return to normal. Astronauts would never return to normal either. Stopping the exercise program shouldn't make anyone go back to square one. How many Americans do absolutely NO exercise at all and don't have POTS? I would guess millions of ppl. Temporary POTS is a completely different thing than the POTS we have. That's why defining a condition based upon symptoms is an awful way of labeling all of us. Even though a lot of us have "POTS", each person's seems unique to some degree. Every single extreme presents itself in the disabling type of POTS (low bp, high bp, low blood volume, normal blood volume, high NE, low NE etc etc etc).

I'm sorry to hear you have this problem. I've never had this before so definitely check with your doctor.

At 21 I had an echo that showed signs of MVP and I was told that's why I was getting dizzy upon standing. I now know that was a load of crap. I had another echo done ~2 years ago and there is no evidence of MVP, so if MVP was the cause of my symptoms, then they should have gone away and they have only gotten much worse over the years. I think MVP is benign in *most* people and I feel it's another one of those things blamed for symptoms it does not cause at all. My doctor was sooo very quick to blame MVP on my POTS symptoms, but when that echo came back clean he had nothing to say about it. Starting tomorrow I am going to start doing 5 minutes a day on my recumbent bike and see how it goes...