issie

They will store your results for a year or more depending on what you choose when you do your testing. It is confidential, unless you choose to allow someone else to have access to your info. They will also keep your DNA and test it when new things become available. I have one doctor that is sort of familiar with this. But, mostly it's us trying to sort it out on our own. But, the doctor that I referenced above and several other doctors whom you can find access to on the net are trying to explain this and help others to sort it out. I think this is something that is not mainstream and pretty new. That's why it is controversial. As for genetic testing - this lab is pretty well known and is referred to a good bit when you read anything related to genetics. You find much more out then just the methylation snps. You may find out things that could be upsetting to you to know that genetically you are pre-disposed to certain other illnesses. But, just because you have the genes for this - doesn't mean that you will actually "get or have" the problem. It's all whether or not something triggers it to "turn on" and then there is the problem. Some things you may be a carrier for and can pass this gene along - but you yourself won't get it. It is very complex and deep. It takes an awful lot of research, digging, reading to understand it all. And even more to try to figure out how to apply it. There are some people that you can hire to help you sort out the information. There is no charge for accessing your info on-line. It is a lot of information that you can download into your computer. But, there is a lot of raw data that will not make sense to you - but, will to someone who understands it. Some of it is broken out and that you will understand. Certain things that are looked for specifically and you will know where you fall as your odds of having that problem. There are two sites that most of us have downloaded our raw data into ---one is Genetic Genie to get our methylation mutations the other is Promethease. That has given me lots of information about myself. There are markers that can indicate if a person has EDS. There are some that "might" indicate issues with MCAS. Markers that can tell about diabetes, heart disease, some other rare diseases, even possible neurological illnesses. I try to warn that it is hard to understand and very complex. But, for me it was one of the most insightful tests I've done. Issie

http://www.dramyyasko.com/resources/autism-pathways-to-recovery/chapter-6/ This one will be a bit overwhelming. But, once you have your mutations, you can start to figure out what to do about them. This is some of the info you can use to determine what is what and what it all means and how it presents. She started out working with autistic children and now lots of other people are on-board with this and finding that it is helping things like ME/CFS and some with POTS are finding good results with it. I have been slowly addressing my mutations and for what I've done so-far, I think it is making a difference for me. There are others that are also doing this - here on the forum. Maybe, they will chime in with their experience with what they've discovered so far. Hope this info will help. Issie

http://snpedia.com/index.php/Yasko_Methylation This is a list of the different things used in Methylation pathways and what each thing could potentially cause if there is a mutation or dysfunction in this pathway. This doctor is doing most of the work in regards to this. She and another doctor are trying to help people figure out and learn what to do if there are mutations found in this pathway. (There is a lot of controversy about this. Some don't believe it and others swear by it.) 23&me does not test all these genes - but, it test enough that you can figure out where your issues are and then with a lot of study figure out how to address this. There is a certain order that you address it in and there is a diet change and supplements are added to get these pathways to flowing properly. Lots of info on the net about this. If you click on the links under each snp you will see what it means and what to do if you have mutations with each of these things. Most of the sites that you'd want to visit and read are listed in this article. I noticed the gene that is complete opposite to COMT is VDR - from looking at this. I need to do some more searching myself. I'm still trying to learn all this and it is very deep and can be confusing. (VDR has to do with metabolizing Vit D and blood sugar regulation.) Issie

Potluck, Yes, it covers that and other things. Then you have to figure out what to do in regards to it. If I mis-understood the reference on the "diet" ---sorry, about that. As I do feel it is probably one of the most important things we can do for ourselves. Issie

I just found this info on the Protomyxzoa Rheumatica (FL1953) protozoa. Has some interesting info and advice on what to use and not use. http://lookingatlyme.blogspot.com/2012/07/protomyxzoa-rheumatica-implicated-in.html

The "diet" addresses your immune system. I personally think - it's THE most important thing anyone can do. If we address what we can and change those things that may be causing problems ---then what's left over ---maybe doctors will be able to help us with. But, addressing the immune system ---may be the key to better quality of life. I think inflammation runs a close second. Issie

The testing that I did was with 23&me. It takes a whole lot of research, testing, reading and learning to figure it all out. Once you get your genetic testing you download your info into Genetic Genie and that sorts out your methylation pathways and that figures out for you if you have any mutations. Then you have to sort out what to do about the mutations. There is a certain order that you address the mutations to get the pathways to working properly. There are a couple of doctors that are working with this "theory" and getting good results. I think this is one thing that is really helping me - in addition to my vegan - low fat diet and the protocol that I'm using for the protozoa and Lyme co-infections that I have. Issie

Potluck, Tramadol has the same properties. Works on serotonin, dopamine and NMDA antagonist - and works on opiate receptors (but is not an opiate) - used off label for those that SSRI's and SNRI's not effective for. I've been questioning the possibility of high glutamate levels vs. Gaba balance for awhile now. There are also some with ME/CFS questioning this balance. There could also be a connection with mutations in COMT and/or BHMT pathways that could play a part in this. If there is a BHMT pathway problem - it is suggested to use methyl B12 and Yucca to help stop build up of ammonia from protein. Just a side note - if there is a BHMT problem and a mito issue - that could be a big problem because some of the aminos used to help with a mito problem could increase the dysfunction of the BHMT pathways. A problem with this could mimic a problem with COMT. Interesting articles - thanks for posting. Issie

Zap, Hope you get some answers! Issie

It can cause vasodilation and if you are sensitive to sulphur, it is high in sulphur. Here is an article describing some of the things Alpha Lipoic does: http://www.geronova.com/content/alpha-lipoic-acid

While I have read that grapefruit and it's juice should be avoided with certain medicines - there is conflicting opinion as to whether or not grapefruit seed ext. would work the same way and I commented to that above. __________________________________________________________________________________________________________________ http://www.nutriteam.com/faq "I'm taking medication for high blood-pressure. Will GSE interfere?" We have no reports of any drug interactions or contraindications of any kind. There is a danger in drinking fresh grapefruit juice or eating grapefruits when taking certain medications(consult your doctor). Grapefruit extract contains 0.1% or less of the compounds that increase absorption of certain medications. Consult your physician.]] _________________________________________________________________________________________________________________________ There are many that will find fault with what another person does and look for something to disclaim or scare off someone else from even trying something. My point is to comment on what I'm doing and what is seeming to work for me. Whether or not you want to try this is up to you. But, I've been on this for 3 weeks now and usually if something is going to stop working for me it does in either 10 days to 2 weeks. So far, the results are still working and I'm feeling better. ___________________________________________________________________________________________________________________ http://www.nutriteam.com/faq What about rumours of Chemicals in GSE? Newsgroups and email groups have received postings to the effect that GSE contains Triclosan, Benzelthonium Chloride, or Methyl Paraben. The source of this type of report comes from both Germany(Here is the PubMed reference to the German Report) and Japan, where Citricidal is not approved for human consumption. A more recent attack on GSE can be found at this link. The reason is that Citricidal is very similar in molecular weight to both Benzelthonium Chloride and Triclosan, both of which are effective disinfectants, but are toxic to human and animal life. In Germany their test(which is not well documented at all) for BC, Triclosan, and M.Paraben came up positive(which is more correctly called a "false positive") and in Japan, the same is happening for Triclosan. USDA found benzelthonium chloride in its 2001 test. Was this a simple error or a deliberate attempt to scare people away from Citricidal and Nutribiotic products? Meanwhile, Citricidal has been tested for the presence of these toxins by independent labs, and has been proven clean. (Ex: Weston Gulf Coast Laboratories, Inc., University Park, IL, test completed in March of 1992. Tested for heavy metals, Cyanides, Pesticides and PCBs and Benzelkonium Chloride. Results: None Detected.) In fact, the accusations about triclosan(used in many dish and hand soaps in the US) became so frequent a few years ago, that Citricidal began specifically testing each batch of GSE for its absense, and providing a Certificate of Analysis to that effect. The truth is, Citricidal is not only effective, it has been in use for decades and recommended by many high profile doctors and healthcare professionals. If these allegations had any validity, there certainly would be a history of complaints and judgements against the product, and it would have been removed from the market many years ago. Triclosan has recently been compared to "Agent Orange" in toxicity. The EPA rates triclosan as "highly toxic". The US FDA made inspections of the Nutribiotic manufacturing facility back in the 1990's and found no chemical preservatives; and the formula is the same today. Such rumours are false, and are not a threat to those armed with accurate information. The test reports from Germany and Japan and the USDA are certainly bothersome, but they have produced "false positives", not accurate profiles. The vast body of evidence from many years of use by thousands of satisfied consumers, doctors, manufacturers, and veterinarians, speaks most loudly against such reports. (The German report, linked above, does suggest that some suppliers of "GSE" may, in fact, be fraudulent. But Citricidal and NutriBiotic GSE are both proven, safe, and effective products.) More on 'quaternary ammonium compounds' here. Read the "Citricidal Story." ______________________________________________________________________________________________________________________ If we want to talk about synthetic substances and chemicals - let's talk about ---ummm --- most ALL the medicines that POTS people take. What are their possible side effects and what do they interfere with? What is going to happen to people's bodies long term and what is the quality of life that is being achieved with those meds? I think there are some good sources out there for most of the alternative sources and you have to do your research and locate the brand that you feel comfortable with. Then you can decide what your body will recognize and use as a food and possibly use as a benefit vs. doing God knows what to us. The closer to whole foods and natural that we can get the better our bodies will like it. But, this is seeming to help me to feel much better and you can just read this and ignore it or think about it and decide if it might help you too. Issie

Most all of my spots are mirrored. But, when I first started getting them - it took time for it to go to the other side of my body. I have the spots all over and they are not small spots - but, rather large. I'm so fair skinned that it is barely noticeable ---THANK GOODNESS. Or I'd be really self conscious. I have some lovely streaks of silver showing up now in my hair - since, it can also go to your scalp and the hair there will not have pigment color in it. But, it's a lovely shade. I like it. I even thought about intentionally trying to have some more streaks put in the same color. But, my stylist didn't think she could match it close enough. I guess they have to bleach it out and then put toner on to get the right shade of silver. Oh well, it will do it on it's own. So, will just be happy with the streaks I have. Issie

It made me think about the antibodies that others are having with AAG and AChr. Wonder if there is a connection between/with these. I'm hoping that my dad's doctor will do some more testing and maybe figure some more out about this. Issie

Zap, that's interesting the connection with cortisol and the immune system. Years ago, I had low cortisol and had to take meds for awhile for that. (I also have IV cortisol with any surgeries that I have to support my adrenal function and prevent crashing during the surgery.) But, I didn't really find that taking the oral meds helped that much. I remember pulling myself out of that with massive doses of colostrum. I didn't realize it was because of working on the immune system that it was doing this. But, I guess it was. Most of the blood testing that I had back then showed cortisol levels at normal - but, the alternative, saliva testing showed very abnormal low levels. Issie

Another thing to think about --there are sites on the NET showing that Lyme disease is also causing these type tremors and issues with the autonomic system in this regard. We've seen some having good results with Alpha Lipoic Acid and many of us have found that curcumin is good for pain and inflammation. So, these seem to be helpful for some of us. Issie

WOW, Nicole. Guess you will have to stick to the Lyme protocol longer. I think it will take awhile for us to get this under control. Also, since it is addressing our immune system - it may be that it will be longer then we like to think. But, since I'm also feeling pretty good these days - I'm determined to keep it this way. I'm still not well - but, have so many other issues then just protozoa and co-infections. But, I really appreciate the improvements I'm finding. Thanks for chimming in. I want to hear what you find with your next lab. Issie

http://circ.ahajournals.org/content/117/21/2814.full " Patients with hyperadrenergic POTS often complain of significant tremor, anxiety, and cold sweaty extremities while upright. Over half of these patients experience migraine headaches as well as a significant increase in urinary output after being upright for only a short period of time. A characteristic of this form of POTS is that patients will often display orthostatic hypertension in addition to orthostatic tachycardia." I found this article from Dr. Grubb about HyperPOTS people and them having "significant tremor". I'm hyperPOTS and do have this sort of tremor. It's not all the time, but when I'm having a "spell" - I get the tremors. Some of my symptoms I think may be from too much NE with upright posture - but, some of them are from MCAS. When lying down, for me - I think those things are from MCAS. It's sometimes hard to distinguish between the symptoms of the two. Issie

Janet, I'm glad the alpha lipoic is working for you. I have some, but haven't started it. I've read some really good reports about it. I'm not sure I'll be able to use it since it is high in sulphur and I have mutations in assimilating sulphates. I've asked a few people who are supposed to know about the CBS mutation in the methylation pathways and they seem to think that if there is an issue with this - that alpha lipoic may not be the best thing to try to take. So, holding off on that right now. I think Vit C and Vit E (full spectrum) are both good. I take those too, (just not daily - with my new diet. Not feeling I need as many supplements - these days). I think Sprouts has it. I got the GSE liquid brand. It's pretty bitter - but, not so horrible for me to not drink it. It's also supposed to be good for washing your veggies and fruits in too Issie

Bebe that is true of a lot of meds with grapefruit. But ,I've read conflicting information as to whether or not grapefruit seed extract interferes with meds or not. I think if you are concerned that it may - it's better to err on the side of caution. But, right now ---I'm not believing how good I feel. I'm doing some major changes and this one really seems to make a difference. I've read that it can be an antibacterial, anti parasitic, and natural antibiotic. It also works on the immune system and possibly can help in blood flow issues (according to some of these reports on blood re-perfusion). So, thinking for me ---it should be a good thing. I've been on it for 3 weeks now. Issie

I remembered reading recently on Regional Pain Syndrome, here’s the link: http://www.rsds.org/pdfsall/Systemic-Complications-of-CRPS.pdf Seems others are connecting reperfusion issues as a possibility and the connections to the autonomic nervous system – showing likely. I have been recently using grapefruit seed extract and having some pretty amazing results with it. I found an article of a study done with this to help in pancreatic reperfusion issues. Here is the link. Thinking if it helps the organs that much – maybe, it will help the muscles and skin with those type of issues too. Since I do have POTS and FMS along with EDS – this is a big concern for me because I have PEM and lots of pain from EDS and autonomic nervous system disorders. The results seem very significant and may be of help to others. I’m using 5 drops in water in the a.m. Would like to hear if it helps others too. http://jpp.krakow.pl/journal/archive/12_04/pdf/811_12_04_article.pdf There was another article saying that Alpha Lipoic Acid helps in liver reperfusion issues. This is also known to help with neuropathies. Makes you wonder if reperfusion is part of the issue with the neuropathies that we have with POTS too. http://www.ncbi.nlm.nih.gov/pubmed/17259747 Issie

Did an experiment while flying. For me wearing the abdominal binder is more helpful. I didn't wear leg compression and only the abdominal binder going on trip (and did great) and wore both on return. I was much more uncomfortable with both on and because I tend to have higher bp's - seemed like I felt way worse. Guessing it caused my bp to be even higher - but, not sure of that. When I travel again - will just go with the abdominal binder and/or lighter strength leg compression. Guess we don't all need the compression on the legs. Issie

Yes, vitiligo and alopecia. Not sure if there is connection - but, do have both. I'm thinking autoimmune is my key to getting better from all this. I also have hypogammaglobulinemia. Issie

So, we address our immune systems ourselves --with what WE can do. Diet and supplements. Here's something someone sent me that I thought was very interesting. I don't have reference sources - but, I found it interesting. When I tried colostrum --years ago - it made a huge difference. So maybe, will go that route again. I do have the Symbiotics Immune Formula of Colostrum and seems like that would be a good thing to try. Something I'm thinking of trying again - anyways. Issie Colostrum contains IgA, IgG, and IgM - which may be why it proves helpful. It could be used similarly to IVIg - but whether or not the large molecules absorb into the bloodstream is questionable, as well as if the stomach acid damages them. MCAD) likely result from one of two scenarios - Infection or Immune malfunction. IgD activates basophils and mast cells to produce antimicrobial factors. IgE triggers histamine release from mast cells and protects against parasitic worms AND some microscopic parasites. Reducing these parasitic infections reverses the immune system suppression that they can cause. This immune suppression can be the cause of various maladies. Some of the research is showing that some autoimmune issues may actually be the result of reduced immune function. ________________________________

I thought this may be of interest to others since there is seeming to be so many of us finding connections with autoimmune issues and inflammation. Notice how this can show up after pregnancies and with other traumas, but is found equally in women and men. It was recently found that my dad has this. Makes me wonder if there is not a genetic component to it. My dad's neuropathy is so bad and he was like his dad and I'm more like my dad. My neuropathy seems lots better since I'm addressing my autoimmune system. Issie http://www.medlink.com/medlinkcontent.asp (I couldn't get this link to work - so here is some of the copied version of it. If you can get the full article it's very interesting.) Sensory ganglionitis Contributors Kyoko Saida MD, author. Dr. Saida of Kyoto Hakuaikai Hospital in Kyoto, Japan, has no relevant financial relationships to disclose. Raymond P Roos MD, editor. Dr. Roos of the University of Chicago owns stock in Amgen and Merck. Publication dates Originally released May 22, 2001; last updated June 13, 2012; expires June 13, 2015 Key points • Axonal degeneration in sensory ganglionitis warrants treatment as early as possible. Historical note and nomenclature In parenchymal peripheral nerve diseases, there are 2 major categories: (1) axonal and (2) neuronal neuropathy (Schroeder 1975). The former results from abnormalities in axons and is also called axonopathy; the latter, from abnormalities in neuronal cell bodies, and is also called neuronopathy (Spencer and Schaumburg 1976). As disease progresses, axonal neuropathy induces central chromatolysis of the neuronal cell body and neuronal neuropathy induces central-peripheral distal axonopathy of a dying back type (Spencer and Schaumburg 1976). In the peripheral nervous sensory system, sensory neurons are grouped in the dorsal root ganglia at the spinal level and gasserian (trigeminal) ganglia in the cranium. When inflammatory processes target the sensory ganglia, it is called sensory ganglionitis. Alternative descriptive terms are sensory (sensory ataxic or dorsal root) neuronitis or ganglioneuronitis. When it is uncertain if the disease is derived from inflammation, it is designated more vaguely as ganglionopathy or neuronopathy. There are 4 major forms of sensory ganglionitis: (1) paraneoplastic sensory neuronopathy (Horwich et al 1977); (2) subacute sensory neuronopathy associated with Sjögren syndrome (Malinow et al 1986); (3) chronic ataxic neuropathy associated with paraproteinemia or polyclonal gammopathy with or without known autoantibodies (Dalakas 1986; Sobue et al 1988); and (4) acute sensory neuronopathy syndrome (Sterman et al 1980; Smith et al 1993), which is variably called acute sensory neuropathy (Windebank et al 1990) or acute autonomic sensory neuropathy (Colan et al 1980). Sensory ganglionitis occurs mostly in postinfectious conditions and resembles a sensory variant of Guillain-Barré syndrome (Asbury 1981; Dawson et al 1988). Chronic immune sensory polyradiculopathy of unknown origin has been reported (Sinnreich et al 2004) in which demyelination of spinal roots is noticed. A focal sensory ganglionitis may occur in viral or bacterial infections such as Herpes zoster (Gilden et al 2003), (possibly) HIV, and Borrelia burgdorferi. The inflammatory changes in vessels, Schwann cells, myelin, or the interstitium of the ganglia or nearby structures secondarily induce a sensory ganglionitis. Table 1. Classification of Sensory (Autonomic) Neuronopathy or Ganglionopathy by Disease Onset Inflammatory or idiopathic (probably autoimmune) Acute Acute sensory neuronopathy Acute sensory autonomic neuronopathy Autoimmune autonomic ganglionopathy Subacute Carcinomatous neuronopathy Sensory neuronopathy associated with Sjögren syndrome Idiopathic sensory neuronopathy Chronic Paraproteinemic sensory neuronopathy Idiopathic sensory neuronopathy Autoimmune autonomic ganglionopathy Toxic, metabolic, hereditary Acute Toxic sensory neuronopathy Subacute Toxic sensory neuronopathy Sensory neuronopathy associated with vitamin E deficiency Chronic Toxic sensory neuronopathy Hereditary sensory neuronopathy associated with various ataxias Sensory neuronopathy associated with vitamin E deficiency Clinical manifestations In general, the key symptoms of sensory ganglionitis are a decrease or loss of kinesthetic and proprioceptive sensation. When large diameter ganglionic neurons are decreased or lost, the clinical signs seen include sensory ataxia exhibited by gait unsteadiness (“stamp and stick” type of walk), positive Romberg sign, reduced or absent deep tendon reflexes, poor coordination, and pseudo-athetoid movements in the hands with fingers assuming hyperextended positions (Smith et al 1993). When small-diameter neurons are affected as a non-length-dependent small fiber gangliopathy, symmetric or asymmetric sensory symptoms such as paresthesias, numbness, shooting pains, or burning dysesthesias of the feet and hands occur, often in a segmental fashion (hyperalgesic type) (Gorson et al 2008). When ganglionic neurons with short segmental roots or nerves are affected, symptoms proceed from distal to proximal parts of the body and occasionally involve the face and trunk. Although an ataxic picture is most commonly seen, both manifestations of the syndrome can be variably mixed depending on the pathophysiology. The symptoms of sensory ganglionitis are exclusively sensory by definition. However, in many instances of both carcinoma and paraproteinemia, motor weakness and muscle atrophy may appear during the course of disease. Less frequently, autonomic symptoms such as Adie pupils, loss of sinus arrhythmia, orthostatic hypotension, sudden hypertension, or segmental loss of sweating may appear. Demyelinative changes are not observed either in electrophysiological or pathological studies. Although the disease may remit when associated with Sjögren syndrome, it is almost always progressive; recovery is poor in cases related to paraproteinemia and toxic exposures. Sensory ganglionitis associated with carcinoma typically develops in middle-aged or older men and less frequently in women (Graus et al 2001). It has a subacute onset with hyperalgesic features and progresses in a few months. This type constitutes about 10% of paraneoplastic neuropathies, and most cases also have a sensory ataxia as well. It may rarely involve the trunk and face, possibly appearing in the face as the "numb-chin syndrome." In some cases, nystagmus, diplopia, memory loss, and dementia may accompany the disease as a consequence of paraneoplastic encephalomyelitis. The onset of neuropathy may often precede symptoms and signs of the primary cancer. Small-cell lung cancer is associated with most cases (Horwich et al 1977; McLeod 1993) of paraneoplastic sensory ganglionitis. Sensory ganglionitis associated with Sjögren syndrome (Mori et al 2005) mostly occurs in middle-aged women. It varies in onset from acute to indolent, progresses rapidly, and is usually a mixed type featuring numbness and sensory ataxia. The trigeminal nerve may be affected, manifesting as perioral numbness (Griffin et al 1990). In severe cases, the entire body may be numb. Sensory ganglionitis associated with paraproteinemia is usually seen in older males. It has an indolent onset in months, progresses slowly, and is usually ataxic in type. Cases with IgM paraproteinemia can be hyperalgesic. Patients often become wheelchair-bound after several years. There are also similar cases with polyclonal gammopathy. A coarse action tremor of hands may be present (Sobue et al 1988). Acute sensory ganglionitis or neuronopathy syndrome usually develops with rapidly progressing sensory ataxia and widespread sensory loss either as a postinfectious complication or following certain events such as child delivery. Both women and men aged between 30 to 70 years are typically affected. Symptoms stabilize in most cases but progress in some; however, improvement of symptoms is usually poor (Windebank et al 1990). Chronic immune sensory polyradiculopathy is a newly recognized condition in which patients develop an idiopathic chronic progressive sensory ataxia of the limbs. There is usually normal sensory nerve conduction and normal action potentials in the distal axons, but the sensory-evoked potentials and nerve root biopsy reveal abnormalities around the nerve roots (Sinnreich et al 2004). Inflammatory neuropathies of the enteric nervous system have been described. These are autonomic and, therefore, motor syndromes. This enteric ganglionitis is infectious or paraneoplastic in origin and produces acutely or slowly progressive segmental symptoms such as achalasia, gastroparesis, and pseudo-obstruction (De Giorgio et al 2004). There is also an autoimmune autonomic ganglionopathy in which IgG antibodies against the ganglionic acetylcholine receptors are found (Vernino et al 2008).

http://jcem.endojournals.org/content/91/12/5051.full Zap, is this the article you're referring to? I find this interesting and yet confusing at the same time. My allele is listed as CT on rs6387. So, not sure why it's not the CG variant that you list. I don't know if this is an old way of recording the allele or why (since my testing has been done awhile). I do however know that I have both low renin and aldosterone. What this article indicated is there would be low renin and high aldosterone and this causing high bp. I do have higher bp's - rather than lower ones. I don't do well on higher salt. I use salt at a normal level and do not salt load. It also mentioned an association with estrogen as to levels of THAIdo excretion, (although this didn't look confirmed). The association with salt/fluid balance and ACTH I haven't been able to figure out. Early in learning of my having POTS - I researched aldosterone since my levels are low and also low renin. Interestingly, the treatment for this is high dose diuretics. Which seems to be so wrong for a POTS person. And the doctors must have thought that also - because they didn't give them to me. I was advised not to salt load. With time, I did continue to have worsening kidney function and my GFR continued to get lower. Since I'm addressing my autoimmune issues with both diet and low dose antibiotics and anti-malarial herbals ---my kidney function has improved considerably - almost near normal now. I'm thinking my key to POTS and my genetic mutations lies in diet and autoimmune. Of course, you and I have talked, and working on the methylation dysfunctions that I've found do seem to make a big difference in how I feel. I think working around that and getting that function to work better - is helping too. Issie