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Everything posted by Chaos

  1. Hi! Sorry you are having to deal with all this. I started having esophageal spasms early in my disease process and when I became super ill with all this, I too noticed that every morning would be horrible and by evening I would frequently think I had turned the corner and was better, only to have it all start over again the next day. It reminded me of the movie Groundhog Day and was totally frustrating. I also experienced the challenges of trying to fall asleep when my heart would be pounding so hard and fast that it felt like it was actually rocking my body on my bed. One thing you might consider is that if you have had a viral illness preceding all this, some antivirals might be a consideration. Whether or not you can get your docs to prescribe them would be a whole 'nother issue. There was some research out of Columbia University a few years ago that showed that people who were sick with ME/CFS for three years or less had a different immune profile from those who were sick for longer periods of time. The theory was that your body fights whatever it is that the viruses are doing to us for about 3 years and then the immune system gets burned out and quits working as well. At the time the study authors suggested that early access to treatment (like antivirals) might help prevent long term onset of ME/CFS. (I bring this up because there is a significant overlap between people with dysautonomia and ME/CFS.) It is hard sometimes to know what is anxiety and what is your autonomic system being so out of whack that it is making you feel anxious. The same neurotransmitters are involved with anxiety as are involved with dysautonomia. While I know that anxiety is real and certainly doesn't help anyone's situation, don't be too quick to assume that it is anxiety that is the cause of your symptoms. I remember being told I was having panic attacks when I would wake up with tachycardia, palpitations and sweating a ton, even though now I think it was the dysautonomia all along. I never felt panicked particularly when those events happened, they just happened out of the blue when I was sleeping. I didn't dream for years so that wasn't the cause of it either. Good luck sorting this out. Hope you can get in to see some qualified providers who actually know what they are talking about.
  2. Yes, I've noticed the same thing with aerobic type activities. My HR will stay up for hours, sometimes days. It also seems to trigger a cascade of other symptoms including immune dysfunction and further autonomic issues, so I largely avoid any type of aerobic activity now to avoid PEM.
  3. Hi! Sorry you are having to go thru all this. I used to have IV saline infusions 3x/week. I found them to be helpful in restoring my energy and helping keep HR down (although ironically they also lower my BP). Unfortunately for me the effects last about 24-36 hours so it eventually didn't seem to be worth the time and money involved to keep doing it. I was also worried about my veins being poked so many times but my doc didn't want to risk an infection with a port because of my immune deficiency. I found them to be most helpful when they could be infused slowly (1 l over 3 hours) and the saline warmed before being infused. It was less likely to trigger other problems. Hope you find something that helps!
  4. Hi! I have been seeing Dr David L Kaufman MD at Center for Complex Diseases in Mountain View. His partner Dr Chedda is also very good. Unfortunately they don't take insurance so I have to pay out of pocket for appointments and then submit it to my insurance for reimbursement as an out-of-network provider. The lab tests they order are generally covered by my insurance so that usually is not an issue as long as you tell them which lab to use. He is knowledgeable about POTS, MCAS and ME/CFS as well as many other issues. I fly from out of state to see him and think it is well worth the effort and expense.
  5. Sorry to hear your Cellcept trial did not work well for you, It is always so disappointing when you have high hopes for a treatment and it doesn't work out. Doing high dose IVIG and Rituxan currently for this diagnosis. Hopeful that it is working as I am feeling better than I have in a decade. But also know there is a waxing/waning pattern to my symptoms so hoping this improvement is due to the treatment and not the normal disease fluctuations. My doc says it can take 4-8 months for the Rituxan to start having beneficial effects. I'm at 3 months now, but he was also hopeful that the high dose IVIG being done in conjunction with the Rituxan might make the benefits apparent sooner. Really hoping the Imuran provides you with further relief! Hugs!
  6. Have had the skin biopsies for SFN. Did not seem like a big deal. Basically like any other skin biopsy at a dermatologist (for example). A bit of local anesthetic and then they do a punch biopsy. Leaves a small round hole that you cover with a bandaid. This doc sounds like he is being thorough so hopefully he will get some answers for you. If not, at least you will have more data to take with you if you have to move on to someone else. While all scans may be similar, the docs who read and interpret them are definitely not all equal. He may trust the docs he works with to be thorough in their interpretations of the results. I had a friend who died of a brain tumor. The local docs said the scan was clear. The specialists who looked at the same scan a year later said they saw the tumor beginning in that first scan. Had treatment started then, she may have survived. So, assuming you trust the ordering physician, it might be a good idea to go with the docs he recommends. Having worked in healthcare for over 30 years, I have seen that a lot of the good docs tend to hang together, and likewise with the less than stellar ones. Good luck with your testing. Hope it is worthwhile in helping you get some answers, and more importantly, some ideas for treatment that helps you.
  7. I have 6 of 9 of the autoantiboides Cell Trend tested for, and am "at risk" for a 7th. I have tried several of the options you have listed above and while some of them helped somewhat they were not enough to keep me working or able to function above a housebound/sometimes bed bound level. I have many of your same symptoms as well as positive tilt table tests for POTS/ NMH/OI. While my POTS symptoms started after a hysterectomy, my ME/CFS symptoms started after a viral type illness. Did you have viral titers checked? Antivirals did help me in several ways although high dose IVIG and Rituxan seem to be helping me more right now.
  8. So sorry to hear you are back in the throws of this disease Firewatcher. So frustrating! FWIW- My POTS started after a hysterectomy so I am sure there is a hormonal factor to all of this. HRT helped a bit. If nothing else it helped stabilize my mood. I used topomax for the 20 migraines/mo I had for several years when I first became ill. It helped cut the number down to about 10-12 and not nearly as severe. Then I started taking anitivirals and my headaches went away almost completely. I maybe get one every 6 months now. I have tried stopping the anitvirals and each time my headaches came back at a nearly-daily rate. I had labs showing that I was positive for auto-antibodies to 6 out of 9 (and "at risk " for a 7th) when they tested for alpha-adrenergic, beta-adrenergic and muscarinic receptor antibodies. With this, and some other test results, my doc got me approved for high dose IVIG and Rituxan. Am cautiously optimistic that I am finally on the right track as I am seeing positive results. However, after being sick for 10 years with this, I also know that I have this waxing/waning pattern so am hoping this good spell is actually the result of the treatment and not just the natural ebb and flow of the disease. Am always hopeful when people disappear from the forum that they are back to having a good life. Sorry to hear that is not the case for you. Sending hugs!
  9. I have definitely noted a correlation with worsening POTS symptoms during my spring and fall allergy seasons. Treatment for MCAS helped some but did not eliminate it.
  10. I tested positive for 6 of the 9 antibodies as well as "at risk" for 1 other one. I agree with you that it is really nice to have a "cause" finally for all these symptoms. Thanks again for all the research. I'll try to answer your survey questions on your other thread.
  11. Same thing here. Any exercise, but especially cardio type exercise like walking or swimming definitely results in PEM for me. With the IOM report, this is now a cardinal symptom of ME/CFS. I love to exercise so this being sedentary is killing me. But when I fell better, I immediately want to start exercising again and as soon as I do, I am back to square one. NIH is starting to look at this symptom so hopefully they will get some studies designed soon to figure it out.
  12. Thanks for posting this. Was also tested thru this lab and found to have positive results. Hope this leads to some more treatment options.
  13. Sorry for the slow reply. Are you using HyQvia for your sub-q infusions? That is the brand I use and it has a pre-infusion dose of Hyaluronic acid that is supposed to help soften up the tissue so that it accepts the infusion better. I inject that over about 30 minutes and then begin the infusions. Do you have something like that which you are using? I am infusing 60 gms (600 ml) every three weeks. I do it in two doses of 30 and 30 on sequential days. I've not had the knot that you describe but I do feel like I have a water balloon under my skin for several days after each infusion. It is a little disconcerting feeling but not painful. Not sure I understand when you say you had 3 sites going into your abdomen? I just have one needle attached to the IV tubing that infuses the full amount on a given day. Then I choose another site on the other side of my abdomen for the next day's infusion. I infuse my 300 ml dose over about 2 hours and then leave the needle in for another hour or so to keep it from leaking out a bunch of fluid. Have you had any better luck with your subsequent infusions?
  14. HI! Good luck with the sub-Q IVIG. I have been using it since May of 2015 and love it!!! It has been a huge help and I've had next to NO side effects. A few headaches sometimes but for the first year, it went really smoothly. I have been able to do the infusions myself at home and do them every three weeks. In May of 2016, my doc doubled my dose and since then I've been having more side effects. May not be totally due to the higher dose of HyQvia as he also made changes to other meds, but I have been "crashing" more for 2-3 days after the infusions since the increased dose started. Hope your treatment goes well and you notice lots of improvement with them.
  15. Hi! I too have had a real challenge with exercise intolerance which is no end of frustrating since I was always very fit and exercised regularly before becoming ill. I spent three years and built up to walking 4 miles every day at a pretty fast pace when my POTS neuro kept pushing exercise. But then I couldn't do anything else for the rest of the day and I would get a ton of migraines and just generally felt terrible. It also, never got easier or made me feel better. Then I started reading the research by these folks http://www.workwellfoundation.org/ Specifically this articlehttp://ptjournal.apta.org/content/early/2013/06/26/ptj.20110368.short This data has been confirmed with other studies at different locations. I went out to CA and had them do their 2 day CPET (cardio-pulmonary exercise testing) and found that while I did fine the first day, the second day everything they look at on the test dropped from 20-43%. I simply could not generate the same effort the second day that I did the first despite trying my hardest. (And after doing the test I was stuck in bed for 10 days with a ton of symptoms). I also learned that my anaerobic threshold (the HR at which you switch from aerobic to anaerobic metabolism) was extremely low, meaning that any time my HR went over 96, I went into anaerobic metabolism. With POTS, my HR was higher than that just by standing up most days. So, the idea with exercise now is to do as much as I can do with functional activities but always keep my HR below the anaerobic threshold. That means no "cardio" type exercises (walking fast, bike riding, swimming) and only very gentle other exercise, preferably supine. Anything more than that will put me back in bed for several days and cause a huge flare in symptoms. Unfortunately, for some of us that have ME/CFS along with POTS, exercise (as most of us thought about it pre-illness) is not a magic bullet and may actually make you worse. That has been really hard to accept as I am a physical therapist and exercise is ALWAYS supposed to help you. And it still does help me as long as I am super careful about how much I do. Hope this gives you some new ideas if you are struggling with never-ending exercise intolerance.
  16. My doc tested me for the two most common mutations. He said that while he was taught in med school that it is not a significant mutation because ~ 20% of the population has it, he has found that 98% of his patients in his current ME/CFS specialty clinic have these mutations. They are starting to do a big study on the topic. He says he doesn't think it is the cause of our illness but seems to play a role in it.
  17. I think a lot of the ME/CFS docs have been realizing just how prevalent dysautonomia is with their patients and therefore are starting to get more research going related to that aspect of the disease. I know my ME/CFS doc has said he suspects that latent viral infections are affecting the baro-receptors and causing a lot of the tachy/BP issues. My ME/CFS docs are big believers in MCAD but also think mitochondria are involved somehow as well.
  18. I have been using nadolol for a few years now and love it. My doc wanted me to get off it as he was concerned about the MCAS issue so I have decreased to 5 mg (1/4 pill) every day but I can not get off it without a significant return of POTS symptoms like tachycardia, tremulousness etc. I stopped it for a month and was so miserable he let me start up again with the idea of weaning down and eventually off it. I can get to 5 mg but not lower. Kris 4444- glad to hear you are finding more abnormalities this time with your testing. It was so frustrating after you trip to Mayo when nothing really showed up like you were hoping. Really hope this time you get more assistance. Sorry to hear you haven't been doing better.
  19. KJay- I also have POTS and ME/CFS diagnoses. Like you, exercise makes me worse. I have always been a fan of exercise and tried for many years after becoming sick to exercise my way back into being better. However, it never happened. A couple years ago, I did the 2 day CPET (cardio-pulmonary exercise test) and found that my VO2 max, watts produced, and several other markers all decreased 20-43% on day 2 of the test. Seeing it in black and white on paper made everything I had been experiencing in my body make sense, even though it never has made sense intellectually. I stopped trying to exercise like I used to and now pay more attention to trying to stay under my anaerobic threshold. I think the combo of pacing activity, along with some serious meds has helped my overall situation. I am much more functional than I was previously but I don't waste a lot of my limited energy on specifically trying to exercise now. However, I can cook dinner a lot of days now, get out to the store more often than once every two months, and don't have to spend so much time in bed so that is a big improvement in my mind. Firewatcher- Glad to hear you found this exercise program to be helpful. Are you still using TCM? Anything that gets improvement for someone is great in my book!
  20. Hi Sue, Hope you are feeling better by now. I found that even when I had pneumonia a couple years ago and was really sick, my temp never went over 99. In Sept this year, I had bronchitis and was really sick again but didn't get over 99.3 that time. Like others are saying, my normal temp runs in the 96.4-97.4 range Apparently, checking your labs is the reliable way to look for an infection when your temp doesn't do normal things. Or trying tylenol to see if it helps your symptoms.
  21. Ophelia- Thanks as always for the laughs. Have missed seeing you around here but glad it's because you've been doing relatively well. My EKGs get the abnormal label slapped on them by the computer as well. Mine frequently say I have had both an inferior and an anterior MI (heart attack) but all the cardiologists who have looked at them say "not so." Also get other various abnormalities reported pretty routinely but my POTS cardio always says "no change" "nothing to worry about". So I guess the computer programmers like to laugh as they imagine us freaking out and running around eating twizzlers. In the FWIW category, there are some ME/CFS docs who say inverted T waves are one of the diagnostic criteria they look for to diagnose ME/CFS. One of them (Dr Lerner I believe) says if you don't have inverted T waves then he doesn't believe you have ME/CFS. Getting the ME/CFS diagnosis by one of the leading researchers in the country was what allowed me to get on antivirals and Ig infusions which have helped me a lot. Best wishes!
  22. Sue- SCIg is Sub-cutaneous Ig. Rather than being infused via IV, it is infused under the skin and then absorbs slowly over the next couple days. The drug I am receiving is called HyQvia. Seems to have fewer side effects than IVIg and can be done at home by the patient once they have been trained to do it. You don't need ongoing home healthcare nurses to administer it so seems to be cheaper than IVIg. According to the home care nurse who trained me, it works great for some people and not so well for others. Seems like that is the same for IVIg as well. So far I am really happy with the improvement in overall energy and strength. POTS symptoms like tachy, SOB and palpitations don't seem to be impacted much by it but those are being controlled for the most part with other meds and supplements.
  23. Hey Rich, Wondering how you are doing with the IVIg these days? Started the SCIg myself and have been really excited by how much it has been helping. I am able to do things now that I haven't been able to do for years. Cautiously optimistic that this may be something that will help reset my system so I can get back to something like a life again. Hoping you are enjoying similar results!
  24. I really like Call the Midwives on Netflix. That's probably been my favorite although I watch a lot of the detective/mystery type shows as well. They have a fairly decent number of movies on their streaming although I don't watch many movies.
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