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Chaos

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About Chaos

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    Advanced Member
  • Birthday February 24

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  • Gender
    Female
  • Location
    New Mexico, USA
  • Interests
    When I'm "healthy": spending time with my family, reading, yoga, cooking and baking, hiking, mountain biking, swimming.

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  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.
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