Birdlady

Yes my hands shake. That's when I know it's a really bad norepinephrine day or at least that's what I call it. Mine is not related to BP, but neither is my POTS. I still drink 1-2 cups of coffee a day because I'm a junkie and can't help myself...lol

I could sense you were not happy with my post. I'm sorry for upsetting you with my "send him packing" remark, but scientists do need to be open minded and be willing to adapt or even completely abandon a hypothesis if enough data contradicts previous findings. In general I'm a highly skeptical person until someone can show me reproducible results or show me what they are doing has merit and some logical sense behind it. I have had Rich look at some of my tests and when my results did not fit his mold or paradigm he told me that I still needed to take all of the supplements. So in a sense, it did not matter what my tests said at all. To me when a researcher or theorist does that, then in my logical view point, that makes me question everything else they have presented as "truth". We will see how things go now that a larger sample of CFS/POTS patients are getting tested through 23andme and Dr. Amy's panel. I never had any interest or means of testing when it was that expensive. I haven't been able to work for over 6 years now due to POTS, so I have to spend my money wisely. Also Rich does make at least some money off of this though by offering consultations. He contacted me about doing it with him and if I recall the cost was open ended, depending upon how many hours he spent on you. We are talking $1000+ here. I try to find people who have been helped by any theory whether that is Rich's methylation theory or something else out there. We can theorycraft on paper what might help someone, but does that translate into real world results? I'll have to start looking again to see how many more are actually getting better, but when I checked 1-2 years ago it was a very small amount. That's why I posted here. I'm encouraged by seeing many people are testing for these genetic mutations and I want to compare results with people. If we can find those who got better with Rich's methylation protocol and find out which SNPs were comparable in those people, it may help give us a better understanding. If there is anyone else who would want to compare with me, I'd be delighted to share. You can PM me on here. I figure we might as well get together and see what we have in common especially since we have POTS. I'm seeing I have some mutations in a few SNP's on the COL1A1 gene, which is assocated with collagen and EDS (I don't have it though). I'm particularly interested in those with HyperPOTS symptoms. I have double mutations on 2 of the COMT genes that Dr. Amy tests for (so does 23andme) which may give some more understanding as to why I have elevated NE levels. Or all of this may mean nothing...HAHA. Genetics are not well understood. I have translated all of my 23andme results into Dr. Amy's notation method, so I can easily compare to anyone. Thank you for offering the spreadsheet. It may be the one I used to help me understand all of this. Genetics are not easy to grasp at all... Good luck to you and I hope this doctor helps you!

I found this thread while searching for "23andme". I have to admit I'm pretty skeptical of Rich v's work. For me I like to look at results of these theories. I just don't think enough people are being cured by all of these supplements...Now that people are actually getting these things tested, I think it will either confirm his theory or send him packing or revising his theory. A few years ago when no one could afford to get this run, they were just guesing what methylation supplements we needed. I am pretty sure Iv'e read liposomal glutathione is just as good as IV's. My husband started taking a different form of glutathione. Can't remember off the top of my head. Any way, I'd be happy to compare the results of the Yasko snp's to you or anyone else that is interested. In fact I'd be happy to compare other stuff too if you are interested. I'm waiting for the sale to buy my husband a kit. It was well worth the $$ to me.

I don't get sick often either, but I think that's part of our problem. Our immune systems are dysregulated. I had strep in December (first time I had been sick in 6 years or so) and my body did not mount a fever to get rid of it.

Hey Issie. Well it's been a warm spring, so I remember just how sick I actually am...I'm sure others are feeling it too with the unseasonable temps. I've also been dealing with a lingering strep infection that lead to post-streptococcal complications. It ended up being a pretty miserable winter as far as health goes, but thankfully we didn't get much snow. I used to inject 5mg of methylB12 on a daily basis and never had any issues whatsoever with it. I don't get any energy, jitters or revving from B12. I think I have high NO as opposed to low NO. This is just my theory and it is not based upon any testing though. One thing to consider is that when you take B12 it can lower potassium levels. I think it also increases RBC production, so anemia may rear its head too. I'm trying to recall from memory what was on the insert included in my B12 injections. I could be remembering wrong so don't quote me! haha. I tried B1 in multiple forms and didn't find anything good happened to me. I tried again just recently because I saw one user on here has been doing fantastic lately since adding it in. Unfortunately it took only 3 days (1 pill a day) for the PVC's to start up. I used to keep going, but after this has happened so many times, I'm afraid to keep going..lol Have you tried the B1 cream applied to the skin? I think it's called Authia Cream. It's really stinky and pricey, but might be something to consider if the B1 is helping so much. I took a quick look at my vitamins and they all say yeast free, so I don't think that's it. The folinic acid was Source Naturals MegaFolinic. The P5P was Now Foods and it also says yeast free. I used to be on a yeast free diet for a year or 2 and didn't find it helped me, so I stopped it awhile back. It restricted so many foods and decided it wasn't worth continuing since I didn't feel any different on it. Turmeric (curcumin) was really bad for me. It made my anxiety worse and I felt manic at times. It modulates the immune system and I decided whatever it was doing it was not a good thing for me. I've had similar reactions to other immune modulating supplements. 1,3 Beta glucans were terrible...Those are yeast based though.

I cannot take any active forms of B vitamins except for L-methylfolate(metafolin), B12 (methyl) and B3 (niacinimide). For whatever reason those 3 don't bother me in any dose. I have taken megadoses of B12 before without any issues and it helps with the numbness and tingling in my legs and feet. However Benfotiamine (B1), P5P(B6), folinic acid and a few others I'm forgetting at the moment, give me PVC's within a day or two of taking them.They start off slow and then proceed to occur at least 5-10 times a minute. It is usually immediately following a breath and becomes extremely uncomfortable. I don't get the jittery, revving symptoms many associate with B vitamins.

There is lots of science on the use of chelators in people who are exposed to heavy metals in workplaces or in kids who are exposed to lead in their homes. When it comes to a chronic poisoning, I agree there is not much out there. I have taken a leap of faith because we have a syndrome (which means a collection of symptoms only) that has no known cure, the cause is unknown and the long term quality of life is pathetic at best. I'm only 27 and have been sick for 11 years. I will be ticked if I end up dying with POTS. That's the attitude and determination I have to get better. When I mean better, I mean normal. I have confirmed testing that show I have very high levels of mercury, lead and tin in my body. Regardless if they are causing POTS, they need to come out of my body. All of those metals are highly toxic and studied in medical journals. As I said before even Dr. Grubb cites heavy metal toxicity as a secondary cause for POTS, so that seems like a good thing for me to rule out. I have continued on chelating. The good news is that I no longer get hives, so I am already seeing improvements. One day I will cure POTS. It may take a long time, but I will get to the bottom of it. Good luck to you...

Not recommended. PM if interested.

Yep I just push through it everyday. I don't let anyone see me on bad days and I never talk about it to my friends or family. There is no reason to discuss it with them as they would get bored and I don't want to think about it any more than I have to. Time with friends is to be enjoyed, not sitting there dissecting a chronic health issue that has no easy solution. It's not like my friends are going to be able to relate to it or give me advice. Overall, I hate talking about my health and avoid it at all costs. "How are you doing". I'm doing all right. That's what I always say. Even if my HR is 150 and I'm dying. Thank goodness I don't have kids. POTS is the reason why I haven't started a family. I just can't do it.

Wow sounds like environmental toxins were both of your triggers. I think they use formaldehyde or some other toxic chemical in those treatments. I believe for many of us it's a toxic that triggers all of this in us, but not many want to look into this much here.

I'm sorry to hear what your daughter is going through. This sounds so scary! I guess wanted to throw in my own experience with anorexia... I had POTS before I became anorexic, but my doctors kept at me to get my weight up too. To be fair to these doctors, having a low weight really aggravates POTS and your body has such a tremendous strain placed on it. That is a fact. If your body is not getting enough nutrition, then normal people have POTS-like symptoms as it burns fats and eventually muscle for energy. Does your daughter frequently have ketones in her urine? I think getting her weight up is a good thing. I'm not sure why everyone is so against this idea on here. I think a lot of us are too thin with POTS and we tend to get used to this small frame and get scared when the scale starts to climb. I think at her height getting into the 110's is a good goal. You said she is 102 right now? That is definitely in the underweight side with a BMI of 18.1. Anything under 18.5 is considered underweight according to this website. http://www.nhlbisupport.com/bmi/ If the issue is the nausea, then they need to figure out why she is nauseous all the time which is keeping her from eating enough. If she takes Zofran (as someone else suggested) and she still does not gain weight even though she has increased her eating, then GI issues like Celiac and other food allergies need ruled out. How is her thyroid function? Blood sugar levels? You said Addison's has been ruled out... Have you seen the results and done your own research on the numbers? Often times if patients aren't completely flatlined doctors miss borderline cases. I have no other suggestions, but I really hope the doctors can figure this out. Keep an open mind about everything because if we knew everything, we wouldn't all be sick here...

When taking the catecholamines, did they place the IV in first and then wait to draw the blood? From what I understand, researchers say the venipuncture itself can raise catecholamine levels. The reason why I ask is 600 is a very high supine level. My epinephrine barely raised but I am on hydrocortisone for adrenal issues, so that was expected I suppose. Off the top of my head I cannot fully remember my epinephrine results but they were <10 while sitting, NE 125. My standing NE was 613. Can't remember the epinephrine. I think 22. So yes you can have high NE with lowish epinephrine.

Definitely a sign of yeast,candida, fungal or some issue in the gut. This is fairly common in those with chronic health issues. My husband has this and we haven't been able to figure it out yet. I don't have this, but then again I don't really have the typical gut issues most have.

Have you ever been evaluated for Addison's disease? Almost sounds like an adrenal crisis in my opinion. Perhaps you are ok from day to day, but when you are under stress your body cannot put out enough cortisol for the stress.

Hmmmm I did not get that impression from what I linked. They insist NCS is a separate condition. ..."but blood pressure does not fall as much as 20/10 mmHg on assumption of upright posture"... The last sentence is saying OI and POTS is the same, yes. Their definitions are different than what we use here even on this forum/website. They include NO significant drop in BP, 30+BPM increase in HR and the elevated NE levels. Many here who have been DX'ed with POTS would not fit Vanderbilt's criteria because they have severe orthostatic hypotension. I'd say that's an appropriate response to an abnormal problem... If the BP was corrected or if the underlying cause was found for the low BP, would their POTS be "cured"?

To add to this though, Vanderbilt University's criteria includes a NE level of 600 for POTS or OI. Their criteria is MUCH more strict than any other facility out there I've seen to date. http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4788 "Orthostatic Intolerance/Tachycardia (POTS) Introduction When orthostatic symptoms occur in patients, but blood pressure does not fall as much as 20/10 mmHg on assumption of upright posture, the patient has orthostatic intolerance (OI). Additional criteria used for the diagnosis of OI at Vanderbilt’s Autonomic Dysfunction Center include an increase in heart rate of at least 30 beats per minute with standing, and a standing plasma norepinephrine level of at least 600 pg/ml. Because upright heart rate is usually greatly increased, the term Postural Tachycardia Syndrome (POTS) is also used." The information from the source you are referencing is from 2000 and is getting pretty aged in my opinion. Surely they have learned more since then.

I always wonder if I have 2 problems cancelling each other out at times. Perhaps I have something that is both lowering and raising my BP, so it just sort of stays in the middle. I know that probably sounds crazy, but I often wonder about it. I met the >600 NE standing criteria for Cleveland Clinic, but at Vanderbilt University you have to be >1000. I definitely don't meet that. I DO have the hyperPOTS feelings though and I tend to do better on beta blockers and have no improvements on what normally helps the PD POTS types (salt, midodrine was AWFUL!, florinef) I know this was brought up in another thread, but we also have to remember that our beta adrenergic receptors may be tuned differently too. Someone with a NE of 450 might have more HyperPOTS symptoms than someone with a 700 if the receptors are more sensitive. I don't think the number alone tells us anything. Beta adrenergic receptors change sensitivities according to our thyroid function (some studies are conflicting in this though). Those with hypothyroid tend to have higher levels of catecholamines. It is paradoxical. During my tilt I had the classical HyperPOTS symptoms (sweating, anxious, got very hot, butterflies in my stomach), but yet my BP did not climb high. It stayed very normal until the end, but I was due for my hydrcortisone dose.

It depends on the day, temperature and time of day for me. I always have a cup of coffee upon waking, but I think it does stimulate me too much at times. If I have it iced though, I usually have minimal issues as long as I take it easy. Usually what sets me off is the temperature of the drink itself. My heat intolerance is just soo awful and it extends to drinks, food etc.

Unfortunately salt and florinef does nothing for me even though my aldosterone is low.

No difference.

Looking through this post, it just sounds like most of us have CFS in addition to POTS. I guess I'm a lucky one and don't have CFS with my POTS...

The OP should call her doctor immediately about all of this. Something is not right. How's your thyroid? Adrenals? Pituitary? I have a crazy slow metabolism, but I have no idea of your history. I can put on 10 pounds in 4 days if I eat junk foods, so for this is not strange, but I know for others it may be... I agree with Sue and Issie. When I looked into MCAD meds, I don't think it's a good idea to stop the stomach from producing acid. I have NO doubt I could get diagnosed with MCAD right now due to chelation. The meds prescribed seem like it would cause lots of digestive and malabsorption issues long term. I take benedryl/zyrtec when I get really bad hives. It is necessary at times unfortunately. Although I avoid the H2's though because I do not like the idea of stopping my gut from working. UGH! Sue you will probably find this interesting. The meds for MCAD have anticholinergic properties (blocks acetylcholine!). You fix one thing to then create more issues. That's why I'm just so sick of the bandaids. This website lists a potential list of side effects for anticholinergic drugs. You trade one thing for another as you said.

Wow I could not agree with this more! My thoughts exactly.

There are thousands and thousands of studies that show mercury is toxic to the body. Just this year the US government is now saying they support the phasing out of amalgams. Seems like a good step forward to me.

11 years for me this summer actually. That's probably why I'm so bitter and full of angst.