Hoosierfan

Yes, we are talking poop. 😜. Specifically transplanting a healthy donors poop into your system (either via enemas or pills). Has anyone tried it? I’m strongly considering it, after years of ABX, antiparasitics, binders etc for “Lyme” and “mold” have destroyed my gut and no amount of supplements and probiotics have done any good. There have been more and more studies and antectodal case reports coming out on its use in ME / CFS, depression, autism, Parkinson’s and other diseases. Big trials ongoing right now for depression (Canada), ME / CFS (Norway) and Autism (US / Australia / China) Searching the forums turned up some conversations about it 10 years ago, but nothing since then. Thoughts? Experiences?

Ugh! I am so sorry you have the same feeling! It’s awful and so far nothing touches it. i will let you know how it goes. According to my pain doc, he’s SURE it will help with my anxiety and depression, 50/50 whether it will help with the burning, and not sure if it will help with the dizziness. He said he’s had the most success with folks who have PTSD and / or severe anxiety (he said it shuts that down well) and lesser, but still significant success with it for pain conditions like CRPS. Once my neuro clears it, I’ll let you know if he has any input on it as well.

I’m having this done by an experienced pain practitioner in about 3 weeks. I have borderline POTS and syncopal events about once a month. I have other comorbid conditions (24/7 dizziness not related to my BP / POTs) and a sunburn pain all over my body. And, as many of us do, significant anxiety. I am checking in with my neuro to make sure this is ok to do; and also my immunologist. The doc I’m seeing is very experienced with stellate blocks, so I know I am in good hands. i will keep everyone posted. 👍🏻

Thanks all! Yes, it is alpha lipoic acid (darn autocorrect!!). LOL. He recommended the four I listed (riboflavin, CoQ10, ALA and creatine monohydrate) and also, and the most important thing, to start getting deep restful sleep (which I don't). So for that he has me on melatonin and benadryl. I am in the process of ELIMINATING meds, so I didn't like the idea of starting the melatonin and benadryl, but he seemed to think I would not break the migraine cycle without getting good sleep. So far so good on the melatonin and benadryl. I seem to be having a reaction to the riboflavin (yellow diarreha) at 250 mg, but I am going to give it a few more days to be sure. If so, I'll probably cut it down to 100 mg.

The title should read "supplement" recommendations. Darn auto correct!!

Hey all! I've been on the forum awhile but only recently gotten into a dysautonomic doc (thanks for all the suggestions)! I met w dr chelimsky on monday and was diagnosed with a mild form of POTS (full autonomic testing coming in june) and chronic vestibular migraine. I am 21 months off of benzos (yeah!) And currently taperinf effexor (since it started all this mess!!). Dr. C recommended a few supplements and after searching the forum, I cant get a handle on two of them -- coq10 and creatine monohydrate. Anyone have any thoughts? I think he is using them to try and get my energy levels up and also reduce the migraines (he also asked me to start riboflavin and alpha limbic acid). Thoughts or feedback??

I have a very mild form of POTs (my Hr goes up about 20 bpm after 5 minutes) and it is most likely caused by the tapering of the anti-depressant I am on (which started this whole business), but that said Dr. Chelimsky wanted me to get good, deep sleep for both the POTS, but especially, the vestibular migraines. So yes for some POTSies it may not be good, I don't know. I have heard his wife is really good too, so if it is her you are seeing (or both of them), I am sure you will get some help for your daughter!!! xoxox

June, I just saw Dr. Chelimsky as a new patient on monday. Dx of POTs (mild) and chronic vestibular migraine. He is VERY good, very personable and VERY knowledgeable. For the POTs he has me on a reconditioning program and some supplements to increase my energy levels, and for the migraines....for now just trying to get good, solid sleep through melatonin and benadryl.

I am now on my third functional medicine doc!!! They have all been really good, trying to put the pieces together, but none has gotten it yet. They do look at the whole body -- hormones, vitamins / minerals, detoxification pathways, nutrition, etc. so that is a much better approach than a normal doc. But also don't forget that they are still generalists, so I find myself still researching and bringing stuff to them, as opposed to the other way around. Case in point my first functional medicine doc was a pediatric hematologist -- and even HE didn't catch the ferritin thing. He just wasn't aware of the connection with syncope / dizziness at "normal" levels of ferritin. I am now going to consult a functional doc who specializes in thyroid, b/c my thyroid may be going bad. So, I think they are good for an overall assessment of health, and helping you in quirky areas that a normal family physician might not get, but in the end if you have a particular disease (POTS, thyroid, a certain cancer, etc) they are not going to be helpful with that -- I think the specialists are better there.

Now I just need the study that says, "hey, we treated those 200+ kids with NCS with iron injections and their symptoms improved!" Does anyone know if this is being looked at?

Sue, yes that is the article I was thinking of. I will forward this one to my doc as well. Just an integrative doctor for now, but I am in the works to see Chelimsky in Milwaukee in a couple of months. I am hoping he can make the connection to my low iron, and if that is it (and I haven't started them yet), get me started on injections. Unfortunately the supplements just are not raising my ferritin very much, probably a malabsorption issue.

Hey chaos. My b12 levels are good. Mcv is at 93 percent but my rbc and hemoglobin are on the very low end of normal. My mthfr is fine altho I do have a COMT defect. The more I read on iron, the more I think it is it for me. It is the one test where my labs have gotten worse the last two years. And these studies suggest it is a major mechanism for NCS.

All, After dealing w/ lots of fainting spells over the years, and after becoming largely nonfunctional the last two years, I FINALLY had a TTT yesterday - -and I failed, spectacularly -- 7 min in and I passed out w/ low bp and a low HR -- so diagnosis of NMH / NCS. On a separate note, we moved about 6 mos ago and I started seeing a new functional medicine doc who ran some labs about 2 mos ago and noted that my ferritin was "a little" low at 11 (I know better now!), so we started to supplement w/ iron and it has creeped up, only to 13.5. After yesterday's test, I started to wonder, could the two be connected, so I did a quick search here and on google and found studies suggesting that my fatigue, jitters, dizziness, constant lightheaded feeling and NCS could be low ferritin -- imagine my shock!!! My ferritin was 24 two years ago and no one said anything! But these studies: http://www.ncbi.nlm.nih.gov/pubmed/18571533 http://www.ncbi.nlm.nih.gov/pubmed/23275108 Seem to suggest that anything lower than the 30s or 40s can be a cause of NCS. And I have read for a menstruating woman that IDEALLY you want ferritin in the 70s!! OMG. My understanding is that low ferritin means that the body does not break down nitric oxide = vasodialation = low bp and NCS. My question is, am I understanding this right? All the science and the mechanisms? I ask because my doctor is reluctant to put me on iron infusions or injections, seemingly ok w the idea of letting my ferritin creep up. But at this rate I would not see a reduction in my symptoms for 2 more years! Ack! And has anyone seen improvement in their symptoms w/ iron supplementation? How much and how were you taking it? Thanks for reading all, I just need some ammo to take into my doc to say "hey, enough is enough. I need the injections to get me functional." HF

Thanks you guys!! I am going to discuss Dr. C with my doc at our next appointment and see what can be done to get into see him and have the full workup done. It would be nice to know exactly "what" is going on; instead of the random treating of symptoms that has happened in the past, and just resulted in me getting more ill. I was recently diagnosed as iron anemic, which could be a large part of this. But again, it was something my doc "caught" only after I pushed to have vitamin testing done. So I really want someone who knows everything to look for, and what to test for, instead of "happening" on things that are wrong b/c I bring a testing idea to my doc. I'm not a doctor!!!

Christy, thanks so much! I looked him up and he looks unbelievable!! Can I ask about your experience with him -- does he tend to push meds or will he look at things more holistically? I got in this mess because docs pushed me onto medications that have just made my health worse, not better. And trying to get off these meds; now my CNS is so sensitive that I have so many other symptoms compared to what I started off with!!! So I really need a physician who will give me the full once over, and then try and resolve this in a holistic manner (even if it is a "wait and the symptoms will resolve" approach). Do you think Chelimsky is a good fit? Many thanks!!

We just moved from PA to Wisconsin (Madison) and am wondering whether anyone on here has a good dysautonomia specialist to recommend. I have had issues w/ OI, not POTS, and my new integrative doc suggested the other day that I have a full POTS / OI workup since I never have really had one (former PCPs just threw psych meds at the problem -- don't ask!! -- which have made my health so much worse). Maybe an autonomic neurologist? Or another type of practitioner? Would love somebody in Madison but would be more than willing to travel to Milwaukee or Chicago if necessary! Thanks!!!!!

All, Haven't posted here in awhile; hope everyone is doing well and healing. I am still in the throes of the nasty ativan w/d....realize I am probably in for a 2-3 year recovery time. Ugh. BUT, I am seeing a new functional medicine doc here at the U of Wisconsin (we just moved) and I have thoroughly stumped her on what is going on with me (whether my hypotension is really and underlying condition or just a symptom of ssri / benzo w/d that will resolve itself in time). So, I need your thoughts on what tests I should ask her to run, in order to get to the bottom of exactly what is causing the dizziness / jitters / low bp / headaches / etc and if there is anything we can do for it (or what treatments will be effective). I have had: thyroid, CBC, genetic detoxification profile (showing I do have a COMT and GSTM defect), cortisol tests, full hormone panels. I am going to ask her to run: full nutrient panel, urine and blood tests to show kidney and liver function. Anything else I can ask her to run....for instance, is there a way to test my blood volume, or my renin activity, or anything else that might clue her in to the sources of the hypotension? I am still on florinef and effexor, which I am sure is slowing the healing from the benzo w/d; but I can't seem to kick either at this point. My bp is running in the low 90s / mid 50s even w/ the florinef, water, compression stockings so I don't know if I should ask her to up my dose of that or do further testing to find the source of the whole thing. Any thoughts and suggestions would be greatly appreciated!! xoxox, HF

Naomi, I'm sorry you went through benzo w/d. I know everyone is different, but how long did it take you to recover?? I was put on a baby dose of Klonopin for about 6 months and then Ativan (stupidly....docs don't get it), so I kindled and am now in a long w/d process. 7 months in for me and I'll probably be pretty sick for a year, maybe 2 by the time it is all done. Ugh. But, I know it will get better. Thanks for the feedback everybody, keep it coming!!

Hi all -- haven't posted here in awhile b/c I've been going through a particularly nasty case of w/d from Ativan -- oh lord. I'm in for the long haul (probably another 6 to 12 months) with it. So, I've been hanging out on a website called "benzobuddies" for folks who are tapering and off of benzos and dealing with withdrawal like me. So this question is not for me but for one of my "buddies." She has developed POTs after tapering off of several years use of Xanax. She is pretty much bedbound -- any movement or stress causes tachycardia, and she even can have it laying down. She also gets a "jolt" first thing in the morning. She never had any tachycardia before being on the benzos, so it is assumed that it will resolve with time as her withdrawal resolves, but that may take awhile (if you didn't know typical benzo w/d can last 6 to 18 months and for some folks up to 3 yrs). So the question is this: first, is the tachycardia harmful (meaning, does she NEED a med to manage it until her w/d is over). And second, assuming that question is "no, it just feels horrible", do you have any suggestions for how she might manage it? She's reluctant to start a med if it isn't needed b/c she is sensitive to side effects, so any "natural" suggestions would be helpful. I've sent her the "what helps" link already. I recall there was a POTsie on here awhile back who mentioned she was going to manage hers "naturally" but I can't recall who it was. And, if anyone has experienced something similar (i.e. drug w/d induced POTs) would love to hear it. Thanks!!!! Hoosierfan

Issie, thanks for the info. I checked with my holistic doc and he said that my CBS and MTHFR pathways were checked and were normal (phew!!). Actually, I got a 2 page explanation of methylation pathways, complete with a powerpoint presentation from him....he he he. So, I should be good on the methylguard and the cruci's. On day #5 of the pill and so far it seems to be bumping up my pressure by about 10 points (whoo hoo), but it also seems to be making some of my symptoms worse (depression, jitters, anxiety) but I'm going to wait that out and see if it evens out. I should note that I'm going through a particularly nasty case of withdrawal from Ativan (stopped it 10 weeks ago), so its hard to know what is what.

Abby, I have been on Effexor XR for years. I have NMH, not POTs. Effexor definetly has an adjustment period for a few weeks (jitters, etc are not uncommon), and it has a horrible w/d syndrome. So much so that I tried to go off a few years ago, gave it 6 months to subside, and it never did (ick). Also, last year I got switched to the generic (long story) without me knowing and I was very sick for 7 months.....ugh. BUT, it has helped my NMH when we get the dose right. I do well on 75 mg....more than that and it zones me out and makes me tired and suceptible to depression. It's important to note that I know I have a COMT enzyme deficiency that we found this year, and COMT is responsible for breaking down neurotransmitters.....so for me, a smaller dose of SNRIs will always give me more effect than a "normal" person because I don't break down and process out the meds as I would if I didn't have this defect. If you can stick with the regular release, and not the XR, please do it. The problem folks have with the w/d syndrome from Effexor is almost always the XR, because it only comes in a few types of doses (37.5 being the least) and it can't be compounded or the capsules broken into smaller doses. So when you are trying to taper off of it (and most docs know you need to do this), your brain has to deal with big jumps. And a lot of our brains / CNS are so sensitive they just can't take those jumps. The regular release comes in smaller doses I think, and I know you can split pills. All that's to say you have an exit strategy for this med if it doesn't work -- and that's important whenever trying any med that messes with the CNS.

Issie, I don't have POTs, just NMH....and now my docs are pretty universal in that for me, it is some combination of a neurotransmitter issue and also a hormone issue. I don't know what you mean by a "CBS or a ***** mutation?" Can you explain?

Issie, you are right about the detox and getting out the "nasties." I'll check out the EstroSense, but for now I'm going to cruci veges / whey protein / methylguard route to hopefully get the nasty estrogens out. Started the pill two days ago so we'll see how that goes. Fingers crossed that taking out the fluctuations will get me feeling better! Lyn, the detoxification profile I had done was done by Genova Diagnostics. I don't know all the genes involved in the detox of estrogens, but at least for me, they listed the CYP1B1 (detoxes the 4-hydroxylation of estrogen) gene. As for the enzymes, I'm deficient in the gene COMT which produces catchol-o-methyl transferase. COMT detoxifies catechol estrogens, as well as neurotransmitters. The methylguard that I take is supposed to help produce the COMT enzyme.

Go Issie! I'm waiting for you to open up your own supplement / natural foods store! It would be helpful too if people listed doses that they found effective. I just started trying supplementing w/ licorice, 450 mg 1 x day and haven't found any difference so I wonder if I'm using too little.

Ooops, forgot to mention, Issie, that you are right about the breaking down, etc. One of the tests my integrative doc did to begin with was a detoxification profile....it showed that genetically, I lack certain enzymes that break down estrogens (so I get all the nasty oxygenated estrogens running around my body). And I think its CRUCIAL that I have that information prior to starting any hormone therapy because we know that IF I decide to add any estrogens, I need to up the things that help me dextoxify them (cruci veges, whey protein, B vitamins).