Positive Tilt Table Test for Dysautonomia

Discussion in 'Fibromyalgia Main Forum' started by Risk, Feb 10, 2009.

  1. Risk

    Risk New Member

    Hi. Haven't posted in awhile. Many life changes. However, I've been dealing with inappropriate sinus tachycardia while standing, shaking, feeling anxious, b/p all over the place and being extremely nauseated with weight loss.

    I did the tilt table test on Monday using the nitro. Well, I flunked! My b/p went down to 40 (has that ever happened to anyone else???) and my pulse went up to 130 and passed out. So due to the fact that I don't do well with meds, my cardio (EP) suggested adding salt either via salt tabs or gatorade or Perrier. Originally he was thinking of putting me on 2.5 mg of Pindolol, a beta blocker. I probably need to go back on an antidepressant, but for some reason, I can no longer tolerate them. I do have both fibro and cfs.

    I get chest pains and get scared to death. Then I think how good could it have been for them to take my pressure down so low!???

    My symptoms are mainly extreme fatigue, exercise intolerance, feeling shakey and cold all the time, with the exception being having night sweats. Sometimes my b/p is low and others especially if I do anything the least bit strenuous, will bring my pressure up and then the palps kick in. It's a catch 22. Exercise is supposed to be good for this condition, but I'm so out of condition that I don't know where to start. It's like being in a constant state of limbo. At times I'm afraid to drive and I don't even enjoy going out anymore for fear of an "attack".

    Does anyone else feel this way and how do they cope? I'm seeing a new therapist today. Perhaps she will have some insight. For now I'm just so scared and I always think it's something to do with my heart. All tests were fine, I even had the calcium scoring done and I have zero calcium in my arteries.

    I have been under a tremendous amt. of stress - divorce, moving by myself and feeling utterly displaced. I take .5mg of klonopin 3 times a day. I was on zoloft for about 8 years, switched to lexapro and had one bout of non sustained ventricular tachycardia. Back to the zoloft which did nothing. This took place in Sept. I was also on bio-indentical hormones and they took me off of them as well. I tried to start up again on the lex about 1 month ago, and had the worst palps and then about two weeks ago tried again with the zoloft with the same results.

    Sorry that this is long. I'm just so frustrated. Seems the only time I feel "normal" is when I'm laying in bed.

    Thank you all for reading this and your upcoming responses.

  2. ulala

    ulala New Member

    I'mm sorry that you're having all of these problems! I've been through everything you just descrribed so I know how difficult it is.

    frankie78 recently posted a good thread about this and her recovery. See if you can go to this address http://www.prohealth.com/me-cfs/blog/boardDetail.cfm?id=1320702 or do a search on her user name frankie78 and look for the thread that she started on 10/17/08. There's lots of good info on this site about this problem.

    One thing that really helps me is if I drink 3-8 oz. glasses of water first thing in the morning, before I have coffee. The more water you drink the better. I don't like water, but it really does help because it increases your blood volume. You can also take the mito supplements recommended by Dr. Myhill and read about Dr. Paul Cheney's work with heart dysfunction.

    Best wishes!
  3. Smurfette17

    Smurfette17 New Member

    Hi Renee,

    Really sorry to hear that. I'm not sure if the following information will help, but I'll share my experience with this.

    I've had CFS for 1 year. Pre-CFS I always had low-ish blood pressure but nothing that interfered with my life.

    About 3 months ago, my bp started going down, especially in the morning. My systolic is usually in the 80s and 90s (sometimes in the 70s). I don't know if it's medication side effects or the progression of CFS itself. Associated with the numbers, I also have symptoms like feeling nauseous, light-headed, often more fatigued in the morning, cold extremeties. Kind of like you.

    I have always eaten a lot of salt. I continue to do that and suggest that. I also drink a couple of glasses of Vitalyte (electrolyte solution) in the morning. I don't know yet if it helps but it doesn't seem to be hurting!

    I take 25 mg of atenolol (beta blocker) for tachycardia. You have to be careful bc while beta blockers will help tachycardia, they will lower your bp even more, so if you do start on it, start on a *small* dose. I don't think my current low bp is due to that, since the low bp started 6 weeks after I was already on the atenolol.

    It's really great that you got a tilt table test. I've heard that meds such as Florinef help with this issue, but I don't know much about it.

  4. Sophiaz

    Sophiaz New Member


    Never posted here before. I had "CFS" from 1985, disabled since 1990. Never had a TTTest until 1998.

    Those of us with dysautonomia aka orthostatic intolerance have different issues than those with CFS and no autonomic problems. I learned this the hard way seeing a "CFS EXPERT" CLUELESS about tilt table tests, even after Johns Hopkins had articles on this in the CFIDS chronicle.

    You may want to check out a foundation, DINET.org or NDRF.org.

    I have also recently done a free Internet radio show about this and am doing one next Monday night at 10pm EST.

    I AM NOT SELLING ANYTHING or "cures" just real life patient dealing with this stuff...have learned to be my own advocate, found a good doctor and INFORMING MYSELF WITH LEGITIMATE websites (that don't sell cures)

    I welcome you to check out either website above though DINET.org is better moderated than NDRF these days.


    My next show is on the page blogtalkradio.com/Sophiasplace

    I am DETERMINED to get LIVE MEDIA attention to this illness.

    Since 1998 there have only been three shows addressing this: 1998 episode of "DATELINE" where they actually USED the word Dysautonomia, and then 20/20 where they called it "CFS" and mentioned a scary CONTROVERSIAL chiari surgery "cure".

    Then recently, the founder of NDRF.org, Linda Smith was featured on "Mystery Diagnoses" as the woman who kept falling down. They focused too much on her migraine headaches (I know her real story) but it was a powerful show.

    You can find her show in excerpts on youtube.

    The reason you feel NORMAL lying down is your body is fighting gravity.

    Please feel free to contact me for some more sites for you to check out.

    Can you send PM's here? I have not been here in years and new to posting.
  5. Sophiaz

    Sophiaz New Member

    can't find a way to send a PM on this site. Oh, I am also major cat mom and a few years older than you. :)

    I use this seldom used email for my show and for twitter. Please contact me as I have some links about Dysautonomia I could send to you. If you need them.

    Or if you use Twitter, I am Sophias_Place on there.

    Hang in there. YOU WILL get through these changes. LIE DOWN A LOT! Elevate your feet and eat salty snacks.

    If you can find a flavor you like (no easy feat!!) Gatorade can be your friend, lol.

    [This Message was Edited on 02/11/2009]
  6. richvank

    richvank New Member

    Hi, Rene and the group.

    Many people with CFS have difficulties on the tilt table test. I think there are three factors that contribute to this. One is that the total volume of blood is less than normal in many people with CFS (PWCs). A second problem is that many have diastolic dysfunction in their heart muscle. A third is that the HPA (hypothalamus-pituitary-adrenal) axis is blunted.

    I believe that the root causes of all three of these factors are well-explained by the Glutathione Depletion--Methylation Cycle Block hypothesis for CFS. You can find a reference to it in my bio.

    The treatments that involve drinking a lot of fluids, increasing salt intake, and Florinef are all directed at trying to increase the total blood volume. They do work to some degree, but they don't get at the root causes. So they are only temporary fixes, and if you stop them, you are back where you were before.

    There is a treatment based on the above hypothesis that is described in my post of July 18, 2007 to this board. Some of the PWCs who are reporting the best results from this treatment are those with diagnoses of dysautonomia. Recovery often starts almost immediately, but it typically seems to take times of the order of a year or more on the treatment for PWCs to get near complete recovery. A small number have been on the treatment for a year or more, and three or four of them have reporting that they are 100% well or at least that they have been able to return to work. There may be more who I haven't heard from. When people recover, they understandably want to go out and live their lives, rather than continuing to post to CFS boards and groups.

    I would encourage you, together with your physician, to look into this treatment. If you want to know whether the hypothesis fits your case, you can ask your physician to order the Vitamin Diagnostics methylation pathways panel. I've posted about this several times in the past. It costs $300, and it will tell you if you have a methylation cycle block and glutathione depletion. If you do, the treatment that is designed to correct these conditions may help you. It costs less than $3.00 per day and does not require a prescription, but needs to be done under the care of a physician to guard against adverse effects that have been reported by a small fraction of those who have tried this treatment. We are planning to present a poster paper on a clinical research study of this treatment at the IACFS/ME conference next month in Reno, Nevada. The results look very good.

    Best regards,

    [This Message was Edited on 02/11/2009]
  7. Sophiaz

    Sophiaz New Member


    Any doctor well versed in Dysautonomia (aka autonomic problems or Orthostatic Intolerance or P.O.T.S. Postural Orthostatic Tachycardia syndrome,or NMH,!! no wonder folks get confused, variations on a theme) can treat patients.

    I see an endocrinologist who is VERY smart as many diabetics have autonomic dysfunction.

    I saw a CFS "Specialist" for years who consulted with Dr. Cheney and when I said "I FEEL BETTER when I Lie down" still was stubborn to get me a Tilt table test. CFIDS journal had an article on it. *Sigh* Back then, they thought a patient had to faint on TTT. THEN racing heart issues were discovered, i.e. POTS, especially those of us with too much adrenalin in systems when we are UPRIGHT.

    So I did a letter writing campaign to find a NEW doctor to investigate my "CFS". The egos have fought for years to change the name of CFS but no progress..but at least Dysautonomia can be CONFIRMED on PAPER...if a doctor knows how to interpret things. (Interpretation to TTT is EVERYTHING..just like reading MRI, CT Scan, etc)

    On the FIRST VISIT, this Endocrinologist did a Poor Man's Tilt table test (Had me lie flat, sit up and stand as the DOCTOR HIMSELF took the BP and HR check) Immediately checked me for adrenal/endocrine/kidney issues to rule out many things. But he could not order the TTT due to freaking insurance. I just saw the cardio a few times since my endo was savvy enough. AND my endo knows I need very low doses of meds.

    The top specialists in Dysautonomia are mostly Cardiologist. NOT because there is damage to the heart but hypovolemia issues that make the heart not push blood where it needs to GO. THUS our issue with gravity. One of the top caring docs in the country I saw, Blair Grubb is a cardiologist.

    So, that quibble aside, no fool :), I have also NEVER heard of muscle damage that needs expensive testing or supplements, that FIXES things. I have dealt with Grubb, communicated with Vanderbilt's Autonomic doctors and spoken with the head of a Dysautonomia foundation. Never read REAL CONFIRMATIONS of any one med or 'supplement' helping people.

    Though we all suffer many symptoms under the same umbrella of generic terms like CFS for me in early years and now to keep it simple "Autonomic Dysfunction", after being disabled since 1990, and reading articles GALORE, the issue is GRAVITY. THEN END. Unless a patient has a temporary form of autonomic dysfunction (blood sugar issues, post oopherectomy (removal of both ovaries, or a virus or even MEDICATION or supplement INDUCED autonomic problems) few "cures".

    Just meds and things we can do to stay comfortable (exercise when we can, eat more protein and salt..many of us STRUGGLE to have an appetite and eat well)

    Catecholamines seem to be the problem with myself and others and the NET Transporter deficiency is a problem in many as Dr Robertson from vanderbilt discovered.

    So, color me stupid but I do not personally believe some supplements will fix anybody. There are variations on a theme, but MOSTLY we are all individual in our body's chemistry. Thus what helps one, may not help another.

    Ok, semi rant over. But again, GRAVITY and circulating blood volume is the issue. Though some meds like midodrine can help that, it's only temporary. And expensive.

    MOST ALL PATIENTS I KNOW do best with compression garments (Waist high stockings or abdominal binders) PROOF the issue is in keeping blood pushed up back to the heart and brain.

    some of those patients are still able to work with these garments, others can not but can get around better. me, I can't wear stockings as they are most difficult to put ON. Have weak/sore hands, no can do.

    But in cooler weather I CAN be helped with abdominal binder. I only used it when I need to leave the house. But when I take it off, I feel lightheaded IMMEDIATELY!! So that proves gravity.

    Thus, no offense, but I see no way how a supplement could fix Orthostatic intolerance.

    P.S. Any doctor without a "God complex" an open mind, willing to learn and trusting a patient to bring LEGIT articles from internet on Dysautonomia, can be helpful in treating autonomic dysfunction. REAL SPECIALISTS are few and far between and many of us cannot travel.

    [This Message was Edited on 02/12/2009]
  8. richvank

    richvank New Member

    Hi, sophiaz.

    You are correct that in the past there has not been an effective treatment for what has often been diagnosed as dysautonomia, and most of the experts in the field still don't know of one.

    What I'm suggesting is that this may be about to change. The first dysautonomia patient to try this treatment started on it over a year ago now. She has been reporting considerable symptomatic improvement, and both her repeated 24-hour saliva cortisol panel and repeated methylation pathways panel have shown objective improvements. I think a second dysautonomic patient has also started this treatment, and maybe some more by now. Their physician is aware of what's going on.

    If you want to find out more about this, join the cfs-yasko group and ask about dysautonomia over there.

  9. simonedb

    simonedb Member

    wow thanks for the eloquently put info.
    my nmh is flaring up again, had the tilt in 96. never found one med supp to be magic bullet, but watching blood sugar helps alittle.
    but do you know a med that regulates heart that isnt too dangerous that might be worth a try? i have tried betas, make me too depleted, yuck and florinef, awful heart race headache, midodrine can't tolerate, but arent there specific heart meds that just regulate beat so wont go too high or low? forget. my heart racier for unknown reasons lately,that effects my b/p to drop, guess thats the mechanism.
  10. Sophiaz

    Sophiaz New Member


    Do you live in a cold climate? I do and it's TERRIBLY difficult to drink as much as I should...water or gatorade is the best..the latter diluted with a pinch of salt in it or a salty snack. I get much more tachycardic when dehydrated!! Vanderbilt docs found out 10 years ago about that in "SOME PEOPLE" not all, that quickly drinking two cups of water can help raise BP a bit. I would try this with room temp or slightly cool water, not cold. Sometimes that helps me, sometimes it does not. BUT our body chemistry changes with each heartbeat..so that could be the theory behind the study rich posted about..but I am leery of supplements due to fillers in them and expense. I am on small income and not married so 90.00 a month for me in this economy!? I need food instead. But if it truly helps some with CFS that's great..but I highly doubt those have SEVERE DEBILITATING gravity issues. Some have this and can still work or work part time...so I need to leave slack for the less sick. :) and not be a total cynical wench.

    I often am nauseated and think drinking is going to make me barf but it usually does not! ha. So really push the fluids for the next 24 hours and check your HR to see if you might just be really dry inside...so to speak.

    Midodrine is B/P specific..Florinef, ugh...miracle to some literal headache to others. Nasty long term effects. BUT if any med GREATLY IMPROVES QUALITY and FUNCTIONALITY, then one needs to try it. Risk vs reward ratio and all that jazz.

    I have a great doctor that gives me access to .25 xanax (lowest dose they make) and I will take this when I need to be upright a few hours...or want to get in a short workout of bone building stuff for lower body. This med helps calm the adrenalin surges..granted, many docs will scream addiction issues yada, yada..but I just take it as needed and not daily. And docs that push SSRI's need to learn about how the brain and body 'gets addicted to THOSE MEDS' but I digress. . .

    Other than that, elevate your feet whenever possible and drink fluids. Set a timer if need be for every hour to drink!!

    Too many carbohydrates work as a vasodilator...horrible for most of us...we need vasoconstrictors. Learning the glycemic index of food helps, too. But SMALL frequent meals are key (excuse me if you already know this) as big meals, especially high in carbs are notorious for causing post prandial hypotension due to excess splanchnic shunting (too much of our low blood volume blood working on digestion, AFTER a meal.)

    Oddly enough, I can have a small glass of very cold beer or tiny glass of wine to help me get an APPETITE to eat as it helps my stomach muscles relax..but I recline while drinking or at least elevate feet. But I must follow up with protein based meal, chicken or beef patty as opposed to pasta based meal. But even Vanderbilt has told some folks 3-4 oz of wine can help digest food as well. But that's a small amount. I used a small glass and a foodscale to be sure I was not drinking too much. On a really GOOD DAY I might have a second glass ! Ha.

    I really need to do a show about diet and ANS issues. I used to do a music show on blogtalkradio (fun NOLA based music) But got annoyed when some CFS/FM shows or articles online, knew very little about ANS based forms of CFS/FM..and a doctor "interviewed for fatigue" simply hawked stuff he sells from his website. *sigh*

    My show has no magic bullets, NO SPONSORS!, no hype,no promises; just want to put a voice to the folks with Autonomic dysfunction (which includes any ANS problem!!) There is so much people can do to HELP themselves based on how they eat and drink and resting tips.

    And no one size fits all but some things fit most.

    I have no problems mentioning meds or supplements that may help but don't believe in false hopes. In mid 90's I was part of govnt study for FM 'cure' with GHB...miraculous for a few, did not do squat for me. THAT SAID i was grateful to get the chance to try. and the OPPOSITE of what the media said about GHB (date rate drug) it's quite safe when you use the real drug as opposed to stuff made in somebody's basement! My sleep doc at the time had me try it and was even featured on 60 minutes for it..also helped improved lives of Narcolepsy...so ya never know.

    One man's garbage, another man's gold....be hopeful, stay as positive as possible between the ears, and stay INFORMED.

    But compression garments help the most..one person with money was going to buy an anti gravity suit from ebay..like the Blue Angel's pilots wear!! I would love one if it came in a size 7 !! And somebody got it for me. Real deal is pricey.

    Sorry to digress.

    please check out my show sometime. I have heard others from immunesupport on BTR.

    can hear my archive of my first ANS show in the archive.

    I'd love to hear from you.
  11. Sophiaz

    Sophiaz New Member

    thanks but I don't want to join a group to read about stuff i can't afford to take or be tested for...i am curious about it but not to join up....i like to read things at my leisure.

    that said, you may be onto something with supplements after reading about your mitochondria comments elsewhere.
    BUT I HIGHLY DOUBT the pts with 'dysautonomia' have the severity that I and others do.

    So you might be on to a missing like in mito disorders that might be of benefit to many, just not sure for those of us with gravity issues.

    I had a boatload of blood work for potential further mito testing but stopped..the Cleve Clinic doc some email buddies went to had WAY too many tests. My local autonomic doc humored me with about 12 vials worth..but mercy, there are so many things to check.

    I am low for instance in VitaD and CoQ 10..but both supplements, even individually at low doses make me sick. *sigh* So it's another vicious cycle. But from what I know of mito problems and lack of energy, thus the ATP and Krebs cycle does not work in some individuals, your theory on methylation might be a small part of the missing puzzle in a subset of CFS pts.

    And in all honesty since many of us severe dysatuonomiacs have similar symptoms, we most all have UNKNOWN etiology. Unlike some, I do not fit into the TYPE A person SUDDENLY stricken ill. 80 per cent have sudden onset of dysautonomia: and 20 percent of us (like me) had gradual onset. OR upon further examination realize I was born with autonomic problems.

    But I will still need to see TTT results in person, before and after to see if methylation "Fixed things". (after 19 years, did I mention I am cyncial? )

    I mentioned elsewhere I was part of FM 'potential cure" GHB study in the 90's at a sleep clinic. One lady walked without a cane for first time in 7 years! Me, i still could not even get to sleep let alone get the benefits of restorative sleep and growth hormones that occur in delta sleep.

    I try not to be a cynical wench but I don't believe in false hopes until the huge numbers are in for larger studies. I read the CFIDS Chronicle for years and remember studies on kutapressin and ampligen. . .i also used to be helped by giving myself gamma globulin injections, then they stopped working...back in early 90's. then my ability to stand up for long gradually kept declining..as did my appetite and weight.

    Hope this makes sense..been posting too much and brain fog...even with this old laptop and lying flat.
  12. simonedb

    simonedb Member

    thx again!
    ghb= xyrem, correct?
    I have heard a lot of what you said but I love hearing it again because I forget etc and need knowledgeable support to try to get back on track!
    more later, will try to check out the show
  13. redhummingbird

    redhummingbird New Member


    I'm so glad to see this thread and to see someone with so much expertise on it as well.

    I've wondered off and on over the past 2 years that I've been sick whether or not I have dysautonomia.

    Are there other tests I can ask for?

    I'd like to find out if this is an issue for me. I went to the websites you mentioned and thought they were really helpful. I'd like to find a doctor who specializes in this but none were listed in my area on the websites.

    By the way, I agree with you that there isn't a one size fits all approach. The methylation protocol has had some very positive outcomes for a few people. I've been on it for 7 months-no change. So now I'm on Valcyte also.

    Since being on Valcyte I've noticed an increase in feeling like my heart is racing at times, heart pounding, concern about fainting anytime I go anwhere (even though I haven't-knock on wood). I'm housebound. I feel best when I'm laying down.
  14. Sophiaz

    Sophiaz New Member

    YES! xyrem. Thanks.

    My brain was foggy too..funny how I FORGET what I know until a question triggers things, lol


    p.s. I am huge on lists and notes. I email myself a list every night (make a call, edit a photo, post something, answer folks) then if from the house and think of something, call my answering machine to REMIND myself to make a note..

    AND I use a dry erase marker on bathroom mirror for important notes, lol....lather, rinse, repeat!
  15. Sophiaz

    Sophiaz New Member


    First, why are you on a drug that makes you feel worse? It's an antiviral correct?

    Meds can worsen many forms of orthostatic aka autonomic problems. Can you discuss with your doctor or pharmacist about stopping or weaning off this med (MANY MEDS should not be stopped cold turkey so ask)

    There is a poor man's tilt table test but that works best for POTS. First, you lie on your back, quiet, NO TALKING for a few minutes. Check BP and HR. THEN, you stand up, immediately check both again.

    Then, you stand and check both again..and again in 5 minutes.

    But if you feel your heart racing, worth looking into. Sometimes just checking your pulse will help for POTS but I am not a doctor of course. But if your pulse JUMPS 30 Beats per minute or more, you need to get a TTT. Most cardiology units have them..but you need a doctor that can interpret the tests. Some docs think you need to faint to FLUNK a TTT. Not true.

    Do you have a BP/HR monitor at your home? If so you could do this poor man's tilt, yourself. Get some legit site info to arm yourself with and approach your doctor perhaps?

    I am curious and concerned about the Valcyte. I currently have a savvy doc and would never accept any and all drugs prescribed, without lots of questions.

    Also I NEVER take a medication that has only been on the market less than 5 years.

    I believe in meds but ONLY when one has done the homework. I am a bit of a detail freak about this. The fact you feel better when lying down is a huge, HUGE CLUE!!

    You should post on DINET.org to see if somebody in your part of the country has a doctor nearby. I suggest them over NDRF.org only because it's moderated and has more traffic nowadays. But NDRF in it's former message board format saved me years ago...now the site is a mess and lost TONS of information...but ASK at NDRF.org, too. ALSO NDRF.org sells some conference tapes with about 6 great Autonomic docs on them. POORLY edited but the information is fantastic..about 5 or 6 hours worth on 3 tapes.

    But if you have a good relationship with your doctor, most are open to learning from the articles of Drs. Blair Grubb, David Roberston, Julian Stewart, and other autonomic experts.

    If there is no PM system here and no way to post emails privately, please register at blogtalkradio and send me a message to me. Blog talk radio is FREE and many fun shows to listen to online if you have access to computer during the day. Something for everybody and no commercials! Well except for the adds on their pages and a pop up commercial before a show starts..but local talk radio I have is only 40 minutes, if that of talk. The rest, news, traffic, weather, commercials, station ID's.

    Or maybe i can post my blog here, but my bTR show used to be mostly music, but I am transitioning!

    On my blog is a youtube link that SOMEBODY made about P.O.T.S. that is simple but GREAT!!

    Please contact DINET.org or me so we can see if we can direct you to SOME KIND doctor..but I know in the NW or Montana areas, pickings are slim.

    [This Message was Edited on 02/12/2009]
    [This Message was Edited on 02/12/2009]
  16. richvank

    richvank New Member

    Hi, sophiaz.

    O.K., I can understand getting cynical after having one's hopes raised and dashed a few too many times, and I can understand not wanting to join groups.

    I hope you will keep your mind open, though. This methylation block--glutathione depletion combination is way bigger than just the mitochondrial thing, though that's an important part. We're talking about root causes of a whole lot of things.

    For example, low blood volume. In many cases that appears to be caused by low glutathione in the hypothalamus, which lowers the production of antidiuretic hormone. That causes the kidneys to dump more water from the blood into the urine than it should. That leads to the low blood volume. The person has a high daily urine volume and constant thirst. The way to fix this is to get the glutathione level back up, by lifting the partial methylation cycle block.

    Another example is the diastolic dysfunction in the heart. That's known to be caused by an insufficient rate of production of ATP by the mitochondria in the heart muscle cells. Low glutathione can explain that, too.

    Then there's the problem with the HPA axis, which is not functioning properly, which likely also plays a role in dysautonomia. I think it's likely that low glutathione in the pituitary is interfering with the proper regulation of ACTH secretion, and that is blunting the HPA axis response to various stressors, including tilting the body up.

    You mentioned costly stuff. The supplements in the methylation cycle block treatment cost less than $3.00 per day. I realize that that adds up over time, but there are quite a few people now who are finding that they're worth it.

    Well, I won't beat on you any more. I just hate to see someone remaining chronically ill when it looks like there's a good chance that they could become well, if they just knew what to do.

    Best regards,

  17. redhummingbird

    redhummingbird New Member

    Thanks for the info.

    My cfids doctor believes a virus is at the root of my illness. That's why the Valcyte. He's very good, has integrity, and I have a good relationship with him.

    I did do about a year's worth of research into Valcyte before starting it. I also tried just about everything.

    I'll have to ask him about POTS and whether Valcyte can exacerbate it. I did ask him lots of questions about Valcyte but not this one.

    Good idea to post about finding a doctor to test for it on dinet.

    Thanks for posting your blog. I'll contact you through there.

    Oh, the methylation protocol is a new treatment, I think in the past couple years. I think it's a worthy protocol and I believe it will help many people-just not everyone. I can't figure out why it's not helping me and can't seem to get an answer about it either.

    My belief is that my quality of life is so lousy I don't want to wait a long time before trying new things. I have a close friend who has HIV/AIDS. He wouldn't be around today if he didn't try the newer treatments. Lucky for him and those who know him, his doctor was aware of the latest research and got him to try it. The HIV virus in him has been suppressed because of the newer treatments he tried. He's an inspiration to me.
  18. Sophiaz

    Sophiaz New Member

    As long as folks are informed, and it sounds like you are, I totally support their choices for meds of course. Besides, it's none of my business anyway but just wondered about the worsening of the POTS. :)

    I am glad your friend who has HIV is doing well and could afford/or get a hold of the meds to help him. LOVE hearing inspirational stories.

    Also love your nikname. I take bird photos and have a few of hummingbirds..and many other birds..and squirrels and stuff. :)

    I hope we can figure something out for you, doctor wise. Keep in touch.
  19. redhummingbird

    redhummingbird New Member

    I completely agree with you about staying informed. I don't mind people questioning me about things. I find it helpful.

    I wonder if you might be onto something about Valcyte (maybe other antivirals too) and the worsening of POTS. In my research I noticed that there were quite a few patients on Valcyte who reported similar symptoms as I did (increased heart rate, heart pounding, etc).

    I wonder if they had underlying POTS. Most people said their symptoms eventually went away.

    But I've always been troubled by the fact that I feel almost normal when I lay down. There have been many times when I've thought if only they had beds everywhere, then I could function normally.

    I too love inspirational stories. They give me hope and provide me with a role model.

    That's neat that you take bird photos. I love birds. There is a story behind my name that involves my mom who died of cancer about 14 years ago (she was only 59). When she was sick (she died only 44 days after being diagnosed) I wanted to ask her for some sort of sign that she was okay after she died but she was so sick and I didn't want to impose my needs on her. She loved hummingbirds. I made her a stainedglass hummingbird one year for Christmass and put a piece of redglass in hummingbirds breast to replace a piece that had broken off. About a week after she died I was sitting on her front porch talking to a friend on the phone when suddenly a redbreasted hummingbird appeared and stayed in front of me for what seemed like a long time. There are no redbreasted hummingbird's where I was from.

    I will keep in touch. I'll most likely try to contact you tomorrow or Saturday. I will be talking to my doctor tomorrow.

    Thanks for your help.
  20. Sophiaz

    Sophiaz New Member

    WOW, sweet story about your mom.

    re: lying down you feel better. I have said similar things for YEARS. If they only had recliners in public places, I could go out more. Ha.

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