martiz

I think he thinks that it may be POTS but there are some things that I do that don't relate to POTS. So, he is thinking some form of dysautonomia or POTS and something else. He won't say till Thursday (well, I saw him for one test but no office visit - he just did the Patent Foramen Ovale test). He did say I am on the cusp of hypermobility but he did not say "EDS". Tomorrow should be a little easier. I hope! I was so tired that I didn't even care about the tornados! Marti

forgot to add... I had no time ask my questions - hopefully I will have time to ask on Thursday. I wrote them down - thanks everyone! Marti

Forgot to add - long intake appt. - went back to childhood issues. Very patient doc. SUCH A GOOD LISTENER! Doubtful that I'll have bloodwork as I had a complete endocrine workup in mid-Feb. Marti

I had three tests today and more through Thursday. Then my final appt with Dr. S. at 1pm on Thursday for results. This is the list of tests. I came in to his office with a POTS diagnosis and confirmation (2 separate TTT's). He is not sure that I have POTS but one thing he is certain - it's not the only thing going on. I have a Beighton score of 4. Not sure what that means-I guess hypermobility or EDS. Not sure. He is definitely all about finding the cause - which is why I cancelled my Levine appt. Very nice staff. Marti Metabolic Stress Test Balance Test VNG - for dizziness - Visual Nystagmus Graphing? Not sure. I haven't researched these yet. Tilt c TCD/PCO2 Ansar PFO SA Echo Stress Echo QSweat QST Hokanson Gastric Emptying test Holter ABM Loop EEG NCV Carotid TCD AAA Segmental Pressures

Hi there, This is my first visit to Dr. Suleman. I have been diagnosed with POTS by a cardiologist & TTT but she didn't know about medication. Then I saw an autonomic doc who confirmed my diagnosis but wasn't too interested in finding out what is causing my POTS. Looking forward to some answers. I sent my records in (by mail then most recent bloodwork by fax). Plus, I have my records in a binder that I will take with me. It is organized so I can find results quickly. Dr. S. also had me fill out an onlline questionnaire. Are you going to see Dr. Suleman or another doc? Thanks for the good wishes. Marti

Hi group, I am traveling to see Dr. Suleman in Dallas tomorrow. I have 3 autonomic books that I didn't read (just scanned). I was planning on having a list of questions but have been busy getting ready and mostly procrastinating. I don't have any major questions for him that are specific to me. I did purchase a digital voice recorder based on advice. Does anyone have any questions they want me to ask him? Angiotensin II antibodies? genetic markers for POTS? Let me know if you have a burning question. Marti

Hi Dana, My thoughts at the ***. regarding researchers, Rich, etc.: ***No problem. I do understand your points - there are many facets of both illnesses (POTS, ME/CFIDS). I have seen Rich switch directions and I think, compared to most researchers, he is very humble and open minded. I am sorry you had bad experiences. I am thankful for any researcher who is willing to find out the cause of these types of illnesses. I know some of them have other agendas and big egos and convinced that their theory is the only correct one. Many researchers will be wrong when any one of these illnesses is understood. There are so many directions for even one of these invisible illnesses. But I do think that even the wrong theories will be helpful in some way. Look at all of the advances in science that were accidental - the goal was to invent something completely different - think White-out and the sticky note adhesive! 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... ***I am sure it is the same one you have found. Unfortunately, my spreadsheet is data for my son who does not have POTS, ME/CFIDS or Austism. He does show some significant issues that point to dysautonomia but not full blown. Or full blown ME/CFIDS. Or even full blown autism (Aspbergers) He definitely has a methylation defect and has done well on a simplified version of the protocol. He could be doing better and now that we have his 23andme data, we are going to revise his protocol when he is home from college. Let me know if you want me to send this to you now (and how). I won't be around for a week or so until I get back from my trip and recover but I would very much love to review this data and see how we can track symptoms to gene defects. (by the way, we see a Yasko doc in Texas and she doesn't run the Yasko test anymore as she has found that just because a gene show a variation, it doesn't always translate to the bloodwork. I think this is a short-sighted attitude. Researching the 23andme data/Yasko SNP's was a snapshot of my son's health. No surprises for the genes that showed a SNP polymorphism. ***The only genetic tests I have done so far are two of the SNP's for the MTHFR gene. I am +- for C677T and +- for A1298C. The latter is what interests me as there is a chapter in Dr. Low's Autonomic Primer that talks about BH4 deficiency with which I have been diagnosed (due to the A1298C SNP). I haven't been on the protocol to fix this due to financial constraints. Are there specific genes that you have researched that I could ask Dr. Suleman about? I have been exhausted getting ready for the trip that I don't really have a list of questions. The ACE deletion seems to be related to POTS but 23andme doesn't seem to do this one. Good luck to you and I hope this doctor helps you! ***Thank you so much. Look forward to working with you!

Hi Dana, I have been involved with the Yahoo group of ME/CFIDS patients who have been trying this experimental protocol. I think people forget that it is a theory, is not being touted as a cure and it's the early stages with a long way to go to find out what works and what does not. Many people were guessing at the genetics (including me) but there have been 50-60 ME/CFIDS patients who were not guessing. They paid for Yasko's testing when it was closer to $800, all of the tests which are run regularly, the expensive supplements. I, for one, am thankful that there are people willing to pave the way. And I am thankful that Rich works so hard at helping the ME/CFIDS population - and he doesn't get paid for it. So, I was a little disturbed by your "send him packing statement". Even if he is dead wrong, he would not be sent packing. I have been on forums with him since 2004 and he is very compassionate and very helpful. Sorry if I sound very protective but I have seen him help people day in and day out for YEARS. He readily admits he is wrong when he is and has been instrumental in bridging gaps between ME/CFIDS researchers. Anyway, I have created a spreadsheet from 23andme data and converted it to Yasko (I think!). I would be happy to share that with you when I have looked it over one last time. I am heading to Dallas to see Dr. Suleman so it may be a while before I can get that to you. Thanks for the tip on glutathione. I plan on restarting that after I am stable on Dr. Suleman's suggestions. Reading your signature, I am impressed that you are fast food free for 5 years. That is quite a feat in today's world. I try but eat out once every 2 weeks. Take care, Marti

Yes it certainly is! And one of my son's favorite foods! When he was little (3 or so), he would open the fridge and pour the parmesan cheese into his mouth! Other than being unsanitary - I hated that habit and tried to get him to stop. He was addicted to the stuff! Now that we know that it is a high source of glutamates - it's off the menu. He is off of it now (mostly). I have never been able to eat the stuff. Marti

I believe that ME is the same as CFIDS but not the same as chronic fatigue. Many illnesses have chronic fatigue. Myalgic encephalomyelitis: International Consensus Criteria published 8/11 in Journal of Internal Medicine: "The label ‘chronic fatigue syndrome’ (CFS) has persisted for many years because of the lack of knowledge of the aetiological agents and the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term ‘myalgic encephalomyelitis’ (ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3). Consequently, an International Consensus Panel consisting of clinicians, researchers, teaching faculty and an independent patient advocate was formed with the purpose of developing criteria based on current knowledge. Thirteen countries and a wide range of specialties were represented." This is the short version. Then the link to the long version (from the original publication). Marti Myalgic encephalomyelitis is an acquired neurological disease with complex global dysfunctions. Pathological dysregulation of the nervous, immune and endocrine systems, cardiovascular abnormalities, impaired cellular energy metabolism and ion transport. A patient will meet the criteria for postexertional neuroimmune exhaustion -Category A, at least one symptom from three neurological impairment categories, -Category B at least one symptom from three immune/gastro-intestinal/genitourinary impairment categories -Category C and at least one symptom from energy metabolism/transport impairments -Category D. Myalgic encephalomyelitis: international consensus criteria Postexertional neuroimmune exhaustion, Neurological impairments {pain, sleep disturbances, A. Postexertional neuroimmune exhaustion (PENE pen’-e) Marked, rapid physical and/or cognitive fatigability in response to exertion Postexertional symptom exacerbation Postexertional exhaustion -immediate or delayed by hours or days Recovery period is prolonged Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level B. Neurological impairments Neurocognitive impairments Pain Sleep disturbance Neurosensory, perceptual and motor disturbances C. Immune, gastro-intestinal and genitourinary Impairments Flu-like symptoms may be recurrent or chronic and activate or worsen with exertion Susceptibility to viral infections with prolonged recovery periods Gastro-intestinal tract Genitourinary Sensitivities to food, medications, odours or chemicals D. Energy production/transportation impairments: Cardiovascular - Orthostatic Intolerance, Neurally Mediated Hypotension, Postural Orthostatic Tachycardia Syndrome, Palpitation with or without arrhythmias Respiratory Loss of thermostatic stability Intolerance of extremes of temperature Link to the original document: http://onlinelibrary...2428.x/abstract

Issie, I sent you two PM on the topics we discussed. I will probably be off the list for the most part for the next 2 weeks as I am preparing for my appt with Dr. Suleman (reading two autonomic books which I should have done earlier!). Hopefully, I will be recovered from the trip quickly so I can report on his ideas. Thanks Marti

AAACK! This statement is incorrect! Sorry- I guess I was more brain fogged yesterday than I thought! Glutathione does not leach out mercury - chelation does do this and so before starting chelation, you must have your amalgams removed. Separate topic that does not apply here. Sorry! Glutathione will help the body remove toxins (that part of my quote was correct). BUT if your elimination pathways are sluggish or not very efficient, the glutathione will help the liver's Phase I work better (collecting the toxins) but it does not help Phase II as much (removing the toxins through bowels) so you end up with re-distributed toxins and feeling much worse than before. Usually people take doses that are too high and they haven't learned how to control detox. (thanks for the chicken info - I know that's true and probably non organic beef liver isn't that great either. I just can't afford organic. I used to raise chickens for the eggs and the meat but I named them so I couldn't eat them. I had chickens, ducks, goats and pigeons. I was going to put in a pond so I could stock it with fish. But animals require a lot of work and I am just not well enough. This year, I put in a mini garden so maybe some of what I eat will be healthy! Marti

I watched the video. Very interesting. I am a long way from her diet though. I am gluten free, casein free, reduced glutamates. Food as it's grown BUT I don't do organic. I still eat meat - no beef or pork - just chicken breast and beef liver. Can't process anything else. I do eat some sulfur vegetables but the only fruit I can eat is apples or berries. BUT I do still eat potatoes. For some reason, I can digest those. No boxed foods or canned foods unless I am really, really ill. I used to juice. May try Kale chips. I love sprouted beans. Most of my diet sort of fits within her guidelines but I would still consider myself a long way off.

Issie, This is what I have found out. Still waiting for some additional information from others nebulizing. What I have gotten so far is that nebulizing does provide some energy for some people but didn't seem to move much glutathione out of the lungs. Same problem with oral glutathione - can't move much out of the cells of the gut. Your friend took it orally because his gut needed healing. So, the people I have heard from so far showed continued oxidative stress (as shown by blood test) even after a year of nebulizing GSH - disappointing. Other are using liposomal glutathione in oil on the soles of their feet for absorption. Others are taking oral liposomal glutathione and feeling the same effects, increased energy as long as they keep their dose below the level for increased detoxification. Which brings me to a caveat I should have mentioned before. It is best if you do not have sources of mercury in your mouth (amalgams, crowns) as the glutathione can pull mercury out of your tissues and leach it out of fillings. Seems that people are using liposomal cream to ramp up to taking oral liposomal products to ease into this. Just a reminder, the methylation protocol I mentioned above are all about increasing the body's normal production of glutathione naturally by correcting any block in the pathway. Supplementing with glutathione goes against that and can be harmful if you have a high toxic load. And speaking of the immune system, in one of Rich's responses, he had found research has shown that T cells need a certain level of glutathione - too much or too little and they do not function properly so it's best to let the body do this naturallly. I will write more when I get more information but I hope you will do more research before forging ahead. Let me know if you need additional resources. Marti

Hi Dizzy, I agree with the GF junk. These products are full of chemicals. I react to some of them as well - actually some of the trigger gastro issues that is worse than when I eat wheat! I noticed in your signature that you follow a paleo diet. I am finding this is best for me as well. Marti

Hi Hilbiligrl, I hope that the connection (if there is a connection and whatever the connection may be) would be beneficial. The ME/CFIDS population has gotten the most help initially from HIV/AIDS research. Now, many are being helped by autism research. Finding where the disorders are the same and where they are different helps to shed light on what we can do to resolve some symptoms or just feel a little better. I have never been able to afford Yasko's testing ($495) but I bought 23andme genetic test for my son ($99 plus $9/month for 12 months). I have read that they sometimes put this kit on sale for just the $9 for 12 months. I have gotten my son's results back and they tested for 26 out of 32 Yasko genes. Unfortunately the ACE deletion is not tested which I think could be illuminating for POTS. I am waiting for the sale and then I will order the kit for myself and my mom. But, honestly, I have gotten more help for my conditions (ME/CFIDS and POTS) by just following the dietary and supplement restrictions. My head is clearer so I can do more research (and pay my bills and other mundane chores). Not much in the way of energy though. I hope there is something in this information that is helpful to you. Marti

Adding this disclaimer here as well 1. I am not stating this as fact! Hopefully, everyone knows that I am thinking out loud, trying to tie pieces of the puzzle together. I hope that I did not make any statements on any thread that is put across as fact. 2. I willingly admit that I have an incomplete understanding of physiological mechanisms - that's why I'm here. Marti

My response to the first sentence is - I am not stating this as fact! Hopefully, everyone knows that I am thinking out loud, trying to tie pieces of the puzzle together. I hope that I did not make any statements on any thread that is put across as fact. My response to the second - I willingly admit that I have an incomplete understanding of physiological mechanisms - that's why I'm here. Marti

Hi Issie, Yes, I have the information but let me make sure that this is the latest and greatest info. It has been about a year and a half since I created a placeholder for the information. I will touch base with the CFS_Yasko group to make sure there aren't any updates. I should have it by tomorrow. Marti

I forgot about glutathione IV. I never did that. Seems like it would be hard for the body to handle. The injections were IM which dissipate slowly and that caused severe detox for the first couple of weeks. The nebulizing method is the most cost effective. The nebulizer will run about $45 and a special mask piece that closes when you are not inhaling is about $10. I can't remember how much the glutathione capsules are (a special kind that are buffered so the lungs don't get harmed - can't just use any GSH capsule.) I am thinking about $40 without shipping from specialty pharmacy. But after the initial outlay, you can control the amount that you are nebulizing, the mask does not let you waste what you are not inhaling so one bottle of capsules could last you a year! The cream is not as effective and it costs $45 for a small bottle. Shipping adds to the cost but I can get it locally. Marti

An easy to understand methylation diagram: http://www.dramyyasko.com/methylation-diagram/ A slightly harder but more informative diagram: http://www.dramyyasko.com/diagrams-listing/ The first part is the green and pink circle that look like gears. This is the methylation cycle which is part of the methylation pathway. the second part - a much more complex diagram - is the 5 cycles of the methylation pathway. Issie: as you can see the right hand circle - the methylation cycle leads to homocysteine at the 6:00 position. This leads to the formation of glutathione. I know that Dr. Yasko tests for the ACE gene (I don't think the ACE gene is part of 23andme data). Anyway, going past glutathione on the diagram, you get to Angiotensin I -> Angiotensin II which I have seen some of you discuss (but which I do not understand it's relation to POTS). I think I have seen posts about tests for antibodies to Angiotensin II? I haven't started looking at this but thought I would point it out for those of you who do research and can see if there is something to this connection. Marti

Hi Bren, You are so right! Even within the same population - there are many differences. Within the autistic population, each child is different from each other. Genetics, environmental assaults, biochemistry all play a part in making them better. I have noticed the same within the ME/CFIDS population. There are some subsets but even then, there are still differences. I like to have tests that show the deficiency or genetic defect before starting supplements now - in the past, I have spent thousands on trying different things. Now, I am waiting to save money some additional genetic testing to give me the whole picture. I have gotten more testing for my son but he is in college and needs more urgent help. Yes, like you and your son, my son and I share the allergy thing. That is common. Other than that, my son (who is not autistic nor does he have ME/CFIDS or POTS but shows predisposition to my illness) don't share much in the way of traits. We do obviously share genetics. Supplements that help me do not affect him and he can take other supplements that I cannot. In addition to our genes being a little different, I have had some environmental assaults that he has not. I have high levels of mercury, I had pesticide exposure as a child that kept me hospitalized for a short while when I was young. The testing that my son has had done are MTHFR C677T and A1298C through Labcorp (this is one of the Yasko tests). I have never had the funds for Dr. Yasko's full genetic test but I did purchase the 23andme genetic test which came back recently and it tests for 26 out of 32 Yasko tests. When he comes home in May from school, we are going to sit down and change his protocol. He also had the Genova Diagnostics ONE test which shows the organic acids, gut dysbiosis, etc. Then he had a specialty test for methylation and glutathione (I think this was through Doctors Data). Anyway, between the 4 tests, we have a good starting point to make him better which has happened to an extent. He has sleep apnea and staying up late at school - he could be better. Good points, Marti

Hi Issie, Actually, it depends on your genetics. NAC is useful only if your methylation pathway is not working correctly to make you low in cysteine. That is not as common as the methylation not working and having excess cysteine (think cardiovascular health). I personally cannot take NAC without feeling worse which means that my methylation pathway must be broken in that cysteine is excess. Oral glutathione is not effective. It does not get absorbed by the body. In 1999, I was a patient of Dr. Patricia Salvato, and she had me inject glutathione daily. After a couple of weeks of detox, I started improving. The current preferred method of getting gutathione is by nebulizing. The next, less effective method is the transdermal cream used by autistic kids made by Kirkmans'. I have been unable to get the injectable glutathione anymore. Not sure if the local compounding pharmacies in Texas can't get it or if it is not available anywhere. I have wanted to get back on the injections but have not been able to. Hopefully, I can start nebulizing in May. I have always wanted to try colostrum as many with ME/CFIDS have had improvements on it. I even had a herd of goats to get my own but I was never well enough to milk them and they were a little too active for me to catch! Marti

Thanks Issie! I thought I would move the subject to a new thread so we don't hijack Rich's initial post. Marti

I plan on getting back on glutathione to see if that will help my POTS. I hope to do this by May. April will be my appt with Dr. Suleman in Dallas and then purchasing the glutathione and nebulizer (although I do have transdermal glutathione which I can try first). I also find interesting that in the book "Primer on the Autonomic Nervous System", there is a chapter on tetrahydrobiopterin Deficiency (BH4) pg 201 by Keith Hyland. Here is some of the info from Chapter 38: "BH4 is the cofactor for tyrosine hydroxylase and tryptophan, the rate-limiting enzymes required for the synthesis of the catecholamines (dopamine, norepinephrine and epinephrine) and serotonin. .... The various defects of BH4 metabolism that occur within the CNS lead to a deficiency of serotonin and the catecholamines.....hence, defects in BH4 leads to hyperphenylalaninemia......Changes are thought to occur as a result of insidious folate deficiency...." I know that I have this deficiency as tested for methylation pathway defect (same test as for autistic children). The gene MTHFR A1298C is where I am heterozygous ( + -) which affects the removal of ammonia and use of BH4. So I should be supplementing with BH4. MTHFR C677T which deals with folate metabolism is also heterzygous (+ -) which means that my body has a difficult time converting folic acid to bio-available forms, first folinic acid then folate (5 methyltetrahydrofolate) causing a folate deficiency. Also, I know from Organic Acids tests (urine, plasma)that my phenylalanines are elevated. I doubt that my levels qualify me for a diagnosis of hyperphenylalaninemia but perhaps this is contributing to my POTS. After the glutathione trial, I plan on starting the treatment for BH4 deficiency and am hopeful that this will make my POTS more manageable. Marti