martiz

I cannot wear them in the summer. They trigger my POTS (but I am in Texas so maybe it is just more humid here). I also found that I am not an extremity pooler but instead a stomach pooler. I do better wearing something around my abdomen. I have posted links with research showing that most of the pooling is from the thoracic area to the abdomen first then pooling in extremities at about the same rate as normals. Going With the Flow – Blood Flow, That Is Speaker: Marvin Medow, PhD, New York Medical College Date: March 25, 2010 Recording of program: http://www.cfids.org/webinar/oi-march2010.wmv (introductory remarks did not record properly) Program slides: http://www.cfids.org/webinar/oi-slides-32510.pdf I am surprised that your doctor suggested knee high as usually thigh or waist high are more effective. Knee highs can cut off your circulation so make sure to move the top band during the day. Marti

Targs and Sue, I am like you - taking minimal D3 would make me very ill - almost flu-like or like a herxheimer reaction. I started at very low amounts every third day then every other day. I am now at 1000 IU D3 every day (after my biggest meal of the day - but that was by accident). I was at 12.5 in 2009 and am now at 48 (as of two weeks ago). I am very pleased as it has been hard to get to that level. Marti

Also, I am not suggesting that you don't use the articles but add some medical documentation to offer objective proof.

While articles may be helpful, I don't think they would be useful in approving your claim. What you need is proof that the articles apply to you and that can usually only be done by testing. I had a neuro psych evaluation done and felt that was important to my case. The other test that is sometimes done is a functional capacity test but this can be detrimental to some people so you would have to weigh that carefully. This test might work better for POTsies because you won't be able to put your hands over your head, your heart rate issues, fainting, etc. Unfortunately for ME/CFIDS or Fibromyalgia, the test doesn't measure functionality the next day or the day after, when symptoms appear, so the test is usually detrimental. Have you considered Allsup? I was planning on using them. They can only take the portion allowed by the government. And they don't take a portion of future earnings (that's robbery!) http://www.allsup.co...ation/fees.aspx Don't forget that there is a time limit for SSDI(used to be 5 years). So, don't let your appeals expire. Disclaimer: I didn't get my disability for POTS so hopefully others can give you advice. And I didn't go for LTD with my employer. I went for SSDI. Marti

I like her and her research. I am saving my money to see her either this year or next. She also works with an exercise physiologist who measure your personal VO2 max. The other side of the coin of HR and exercise is that you exercise and stay under your VO2 threshold. I am curious what my threshold is as I find that my post exertional malaise is so much worse when I let my HR get too high during exercise. Marti

Hi Kayla, I actually believe that my Psych eval was the deciding factor in my approval. I had had some testing done but not a lot of tests. My psych eval was a neuro psych eval which showed the problems I am having with hand weakness. It showed brain fog and cognitive dysfunction. The therapist had several manual hand tools which I was not able to use correctly (hand grip measurement tool, a button that you push as fast as you can (which I could not do without severe reaction). I think you will be surprised - if it is a neuro psych eval. Perhaps you can call and make sure that it will be that kind. Good luck. Marti

I have heard of her. I don't think she would steer you wrong. I can look up some information from people who see her and send them to you offline. I prefer Valtrex (valacyclovir) to acyclovir. The difference is an amino acid called valine. I have tried acyclovir with valine but haven't given it long enough to test the dose of valine needed - also reluctant to have a downturn and reactivate my viruses. I have not taken Famvir or Nexivir (although I have Famvir in a drawer). I can look these up for you if you need help researching them. I think I answered some of your questions about my POTS vs ME/CFIDS in my next post. let me know if you want more info. There are many natural substances that are anti-viral in nature. Olive Leaf Extract is probably the strongest as is Apple Cider Vinegar. As issie noted, even honey is anti-viral. Garlic. Valtrex/Acyclovir work by stopping the replication of the virus (not all of the viruses - just some of the Herpes viruses- EBV, HSV). I can't remember if it works on Cytomegalovirus - I would have to research this - I forget a lot). For this reason, you should not experience a herx reaction but I know of several people who have so be aware of that. If you are working, start on the weekend. Apple Cider vinegar works to break down the lipid layer surrounding the virus cell. This may cause a herx reaction. Olive Leaf Extract works on the protein coat so the action is more similar to ACV. Lysine slows down viral replication while Arginine is said to promote replication. Changing your diet to reduce sources of arginine is supposed to be helpful. I don't pay much attention as my diet is already too restrictive. I have found that some of the viruses replicate on an 8 hour schedule so dosing on an 8 hr schedule can be helpful. I have done this but it is very difficult for me to do due to the circadian rhythm problems that I have. HTH, Marti

Hi Jangle, Yes, oxidative stress is a big deal. Yes, I do take antioxidants. High dose vitamin C, E, alpha lipoic acid, superoxide dismutase. In the past, glutathione supplementation (by injection not oral) has been effective. Caffeine cleanses to help remove toxins which relieves some oxidative stress if used with high dose vitamin C. Activated charcoal to help bind toxins - blood purifiers, etc. I have gotten away from some of this so it has been helpful to remind myself to do these things. I have had a few genetic tests done and my body cannot remove ammonia - Tetrahydrobiopterin deficiency. There is a chapter on this (BH4 deficiency) in a chapter of Clinical Autonomic Disorders by Phillip Low but I haven't read that far yet. Inflammation is a big deal. The immune system defects are well documented in the ME/CFIDS world. It's not new. What is new - (4 years) is the methylation defects that can occur in ME/CFIDS which are similar to the autistic population and as I am seeing - in POTS (I think). I have two books by Dr. Low and trying to get through them so I can tie the bits together. Unfortunately, ME/CFIDS docs don't pay much attention to Orthostatic Intolerance (Cheney has probably been the most active in this area). Just add salt and increase water. I feel that as I get older, POTS is more of an issue. Sometimes, I feel that I have been misdiagnosed and POTS is my true diagnosis. I don't think I have EDS (pretty sure) but feel some Mast Cell disorder may be the next thing to focus on. When I get off my antiviral protocol, my POTS is so much worse. I have near-faints while laying horizontally. I also experience adrenal fatigue more readily so it seems the endocrine system is an issue for me. On my anti-viral protocol, I can be upright much, much longer. I can attend church. I can drive with more confidence (I am still homebound though). I can go to the grocery store (using one of their carts). My brain fog is lessened.I can remember to pay bills, take care of paperwork (in small amounts). I can exercise (in small amounts). Recently, due to my insurance change, I was given a different generic Valtrex which does not have the same emulsifiers and suspension agents and I was so, so ill. Sore throat, feverish, body aches, joint aches, feeling like there was a balloon in my head, Within two days of switching back to my regular generic, I was so much better, I wanted to cry in relief. There are 3 manufacturers of generic Valtrex that do not use these emulsifiers and I believe they do not work well. They are not in the bloodstream long enough. It seems that the blue, coated generic Valtrex have the emulsifiers and suspension agents while the white, non-coated pills do not. Also, if you read the valtrex.pdf, two substances prolong the half-life. One is Cimetidine and the other is baclofen (I think). I can look this up if anyone wants it. That's why I wonder so much about viral issues with POTsies - when I am sensing is that a subset of POTS patients have reactivated viruses while most do not. Maybe I should create a poll? Still trying to figure out if there are two illness or if one is the subset of the other. Marti

Wish I had seen this before Dr. Levine called me. I would have spoken up. Phooey. I guess I can send an email to his staff telling them how upset I am. I know there has been much discussion about whether the "grinch" name is damaging or not. I am deeply offended by it because of the damage that the name Chronic Fatigue Syndrome has done to that population. Using fatigue in such a way has caused the diagnosis criteria to be skewed to anxiety and depression resulting in ineffective and harmful treatments (GET and CBT - Graded Exercise Therapy and Cognitive Behavioral Therapy). The proper term is ME - Myalgic Encephalomyelitis which scientifically explains most of what is going on with that illness. Marti

I was approved in just under 60 days. But I had not been officially diagnosed with POTS yet. I was approved for ME/CFIDS and one other illness but I was so sick at the time that I never pushed to find out what the other illness was called. I am pretty sure it wasn't depression because I fought tooth and nail not to have that in my record and during the testing for disability (the psych evaluation, etc). Depression is real and valid and I have no problem with people getting help or disability for this reason but I don't feel that I am depressed and I didn't want to receive disability for an illness I don't have. I waited 4.5 years to apply because I kept thinking I would get better and be able to work again. I was in such brain fog that all I could do was fill out the application and I was just attempting to open a file. I was expecting a two year fight. If I had waited another 6 months, I would not have qualified. Yikes! I hate to think of where I would be. I was in disbelief when I got the letter. I also have Home Health care. It works differently that yours but I get the same type of help. I also hope and pray that I can get some POTS help so I can be more independent. Marti

First a disclaimer: I have ME/CFIDS. I have gotten little to no help from doctors in my area. Switched my insurance. Fixing the POTS first (or at least making it better) so I can travel to one of the ME/CFIDS Infectious Disease people out of state- Klimas, Lerner, Chia, Montoya- there are several. I am not telling anyone what to do - but I hope that I am not burned for telling you what I am doing - what I have chosen as right for me (after weighing the risks). All that to say - I am on Valtrex 500mg per day. I have been on Valtrex valacyclovir) for 3 years and acyclovir for 3 years prior. Every day. Without it, I wouldn't be here. When I stop taking it, the viruses reactivate and I feel like death warmed over. Cannot function. Period. Valtrex is one of the supplements/medications I would take if I were stuck on a desert island. Yes, I know all about the danger to my liver. Yes, my liver enzymes are monitored by my doc. I have no choice - yet. I have taken other anti-viral supplements as well as Valtrex. Olive Leaf Extract, Coconut Oil, garlic, Apple Cider Vinegar, Lysine. Several homeopathics, lemon juice/olive oil drink, Immunpro undenatured whey. Over the past 12 years, I have only tried many natural anti-virals. My preferred cocktail (what I am currently taking)- 500 mg Valtrex, 3000 mg Lysine, 2 oz raw, unpasturized Apple Cider Vinegar (in two doses). These work consistently for me without building a tolerance. Other supplements seems to stop working so I sometimes pulse them - for example, Olive Leaf Extract. Liz: I have never tried Red Marine Algae - I will research this - thanks! There are other antivirals as well but I have not tried them - Famvir, Valcyte, Ampligen. The current thought is that retrovirals are more effective but this is too early to say yay or nay. There are a slew of retrovirals. I haven't tried any of them. I have other reactivated viruses beyond EBV. I have tested positive for mycoplasma (a bacteria), parvovirus B19, cpxsackie virus, cytomegalovirus, and HHV6. HHV7 was negative. All of these tests were done (over the years and with much hassle) using PCR which I believe to be more accurate. My NK cells are extremely low. Nothing I have ever done has brought them up except for one thing - glutathione injections. Considering adding this to my protocol again but in the nebulizing form but my levels never came up very high. There are quite a few things I haven't tried yet - funds are my biggest issue. I have never tried Transfer Factors. There are several methylation steps I haven't taken - lots of room for improvement here. Rama - I agree with you that it's not the viruses or infections per se but malfunctioning immune system. I am pursuing Methylation cycle defects to switch from TH2 to TH1 - something I have been chasing for 12 years. Any tips on accomplishing that (TH2 to TH1) would be welcome. This is an old article and Dr. Cheney (an ME/CFIDS specialist) may have changed his stance on these TH2 to TH1 shifters. Proceed after doing your own due diligence. http://www.anapsid.org/cnd/diagnosis/cheneyis.html While I would never advocate taking long term antibiotics to get rid of an infection (there are several ME/CFIDS docs that recommend this), I do think taking anti-virals helps take the load off my immune system. It makes me well enough to do research, to live a reasonable life, to continue trying things to get better. While antibiotics destroy the gut bacteria, anti-virals do not. So, I have accepted this level of risk. And there is risk taking any medications - I have many family members with liver issues. My sister has cirrhossis and 3 of my uncles died of Non-Alcoholic cirhossis. So, I take medications very seriously. I also take Low dose naltrexone. Started it about 2 years ago to replace my narcotic pain meds as I was building a tolerance to them. This is another of my "desert island" supplements. As long as I am not too physically active - it handles all of my joint pain, muscle pain. It is also a boost to the immune system but I don't have bloodwork to quantify that. Marti

I have not been successful with Levine's protocol (even starting with Pre-Month 1 & 2). I joined the YMCA but haven't been able to keep going. So this is my NEW solution which seems to be working (I am bedbound right now). I had purchased one of those portable bicycle contraptions ($20 at WalMart or Academy). The kind that you could put on a table to exercise your arms. Well, I attached it vertically to a wall stud using 2 screws and 2 hose clamps (the silver kind you use a screwdriver to tighten. This lets me slide it in and out as needed (if I want to use it on the floor for my legs or on a table for my arms). Anyway, I lay on my back on my bed and cycle. I can read a book or watch a movie on my laptop. In the beginning, I set the tension to be very light and just did a few minutes.. Now, I cycle for 10 minutes using very light tension then do 2 minutes on a higher tension then cool down with another 10 minutes on light tension. This took me 2 weeks to get here - it may take you longer. Doesn't matter My heart rate goes up but not as much as if I were sitting or standing and exercising. I feel just enough muscle "soreness" to feel good the next day. It does seem to help me with blood pressure and HR control the next day (this may not be happening - it may be placebo effect). I try to do it in the evenings. If I do it during the day, I am too fatigued to make use of my day. ________________________________________ When I first got sick (with ME/CFIDS or POTS, who knows!) in 1999, all I could do was 3 leg lifts while lying on the floor on my side. Then I would rest and do 3 more leg lifts on the other side. That was all I could do for weeks. Once I stabilized, I was able to do 3 more leg lifts each week. Sometimes, I was not able to add more. I just tried not to slide. Before long, I was doing 100 on each side. Then soon after, I was walking a mile a day in the Texas heat. Starting with one minute would not mean anything to a healthy person, but one minute makes a big difference to us. My endocrinologist wants me to do this every day not every other day (as most exercise programs suggest) and I think that is the advice I have read here. That has been true for my experience. I have to do it every day or the benefit disappears and it feels like I am starting over again and again. Perhaps when I am more fit, the benefit will last a little longer and I could skip a day. Not sure.

What a great line!

This was very helpful. Thanks for posting. Marti

Hi Sue, I am pretty sure he did not say that there were other causes of POTS. What he said was that he was aware that people could have more than one thing going on including the POTS. I feel certain that he was not changing his position which is that POTS is caused by deconditioning. I will check my post and make sure that I correct the language - I didn't mean to give the impression that he has changed his position. Marti

I have done loom knitting. no counting, that's too hard! I have made some beautiful things not just hats. I use the fun fur and interesting yarns with regular yarn. Relaxing.

correction: some of the vitamins are bioavailable versions.

I use the formula used by autistic children who are a very sensitive population. it is very clean and some of the supplements are bioavailable. I take the iron-free and copper-free but there is a formula with iron. PM if I am not allowed to post the brand.

Well, as nice as he was, I am going to see Dr. Suleman for the following reasons: 1. Dr. S. does extensive testing. I believe that it is important to have a snapshot of what my body is doing and what is not working. In addition to medication choices, there are other possible beneficial practices/lifestyle changes based on what is not working. 2. Dr. S. doesn't seem to focus quite so heavily on exercise. I am exercising but I am not willing to push my body into a relapse (which I have done twice with ME/CFIDS). Each relapse left me with less functionality than before. 3. Dr. S. seems to treat patients ongoing not just making a diagnosis which I think would be helpful. I got the feeling that Dr. L. would want to work with a doctor here and I only have an endocrinologist who is POTS friendly. But Dr. L. may be someone I will see in the future if I can't make progress with Dr. S. He may catch something that has been missed. But I will give Dr. S. two or three years before moving on. It does make me forgive the Grinch remarks. Although I do fit his deconditioning theory, it seems unrealistic to state that deconditioning is THE cause. But I do think he has helped people and I think his staff is top-notch.

Forgot to add that I usually eat some carbs before I lay down which helps to make me drowsy.

I have this too. For years. Very annoying. I always thought it was normal levels of oxygen reaching the brain once I was laying down as opposed to cerebral hypoperfusion. JenJen, I think you may be onto something. There has to be a hand-off between the two systems during the change of state called sleep. I find that if I don't lay completely flat but keep my head and legs elevated (like the zero gravity position), then I can minimize the symptoms but really, Benadryl is the best answer I have found so far. Also, I spray about 7 sprays of Bach's Rescue Sleep Homeopathic Spray. This helps to calm things down. If I am emotionally upset about something, I will spray a few sprays as well (Like the Rescue Remedy). Helps to calm down.

They also discuss the difference between Orthostatic Intolerance (POTS/OH) vs. CFS vs MVP. they are using the CDC's criteria (which included people with depression and no physical ailments). "POTS can be differentiated from CFS by the predominance of orthostatic symptoms...CFS is dominated by non-orthostatic symptoms and has many quasi-infectious symptoms.....We recommend that when the features of fatigue predominate, the condition should be designated as POTS associated with CFS. ......Similarly, orthostatic intolerance should not be considered an integral part of MVP. When orthostatic intolerance is a feature of MVP, the condition should be recognized as orthostatic intolerance or POTS associated with MVP." page 690 of Clinical Autonomic Disorders edited by Phillip Low of the Mayo Clinic. I guess they mean POTS secondary to CFS or MVP.

I am now reading Primer on the Autonomic Nervous System and Clinical Autonomic Disorders. The difference between POTS and Neurogenic Orthostatic Hypotension comparing 4 categories (Orthostatic Symptoms, Orthostatic Hypotension, Orthostatic Tachychardia, Standing Norepinephrine) POTS has Orthostatic Sympotoms of Dizziness, Tremulousness, Palpitations, Nausea, Skn Vasoconstriction, Hyperhidrosis, Chest Wall Pain) OH only has some dizziness POTS has some Orthostatic Hypotension OH has a lot of Orthostatic Hypotension POTS has Orthostatic Tachychardia OH does not POTS has increased or normal Standing Norepinephrine OH has reduced Standing Norepinephrne

{Moderators: Please delete or edit as needed.} What a nice guy! I had an appt with him for mid-March which I cancelled (I am already in his exercise registry but have not been able to get past pre-Month 2. He just wanted to make sure there was not an OFFICE miscommunication that resulted in my cancelling my appt. Wow, I am shocked at the follow-up. My neurologist wants me to see him as she is stuck. My endocrinologist doesn't want me to see him because she just ran extensive bloodwork and she feels a local doc might be able to get a little further than the neurologist; she doesn't feel I am strong enough to go out of town right now; and she doesn't feel the exercise program is suited for someone with ME/CFIDS due to the potential for a relapse. I agree with all of her reasons. When I explained all of these things to him, he was very understanding. In summary: He agrees that there aren't many specialists in Houston. He mentioned a name that I had not heard before but I didn't catch it. It was not Shabani or Nasir. He was just here yesterday teaching. He understands that most people are not POTS only - that this is a very complex illness and there are many facets. While he does focus on exercise, it is not his only focus. While he does do some testing, he has found that the extensive testing doesn't always contribute to the treatment plan. He used to do the very exhaustive testing. Now, he does testing based on what he feels the patient needs and some patients need the advanced autonomic tests, while others don't. He didn't seem to feel that medications were all that useful and that there were other non-medication methods of improving. I might be wrong here as it was a short conversation. He was very nice, and very understanding. He wished me well and if I needed to come and see him in the future, to feel free to make an appt. He said Dr. Nasir sends patients to him as well as the other doc (I didn't catch his name). He definitely understood chronic illness and was very nice. Not dismissive as most other docs. I was very impressed at his follow-through. Rare even with the good docs. Marti

Hi Group, For the last month or so, my chest pain has been much worse. I have been increasing my electrolytes with EmergenC packets (sometimes 2 a day). I have not been salt loading. Finally, last night, I took 1/4 tsp of Lo-Salt (66% Potassium Chloride and 33% Sodium Chloride) under my tongue with water and within 15 minutes, I felt relief. Chest pain is gone this morning - not even tightness. Taking another 1/4 tsp this morning with my tea, 1/4 tsp = 1.3 grams * 66% = 0.8grams of potassium - definitely more than 99mg that is a normal supplement serving. Am I onto something? Is this too much potassium? Waiting for my recent bloodwork but the results are not back yet. Marti