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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Ruthie24

    Thymosin Alpha 1 injections?

    I noticed help with my joint pain (and radicular symptoms) with the TA-1 injections. Seems to be hard to get now. I had stopped using it for a couple months and really noticed the difference. Haven't tested NK cells to see if those have improved from the almost non-existant levels they were...
  2. Ruthie24

    Poll: Do you have an exaggerated startle reflex or response?

    So happy to hear that this is yet another one of the improvements you have noticed with the Ig and Rituxan! Wish mine would be consistently decreased.
  3. Ruthie24

    Poll: Do you have an exaggerated startle reflex or response?

    This is all very interesting. My GAD-65 was very high when we tested it on three different occasions 2 years ago. My cortisol is also low and my aldosterone was "undetectable" when tested at our doctor's office in Mar. This is after about 4 years on SCIg and 2 years on Rituxan. My startle...
  4. Ruthie24

    Poll: Mestinon Trial

    I tried Mestonin several years ago. I found it helped with my high HR but it didn't help with the hand tremor and some other symptoms that the low dose beta blocker helped with so my doc and I decided to go back to the beta blocker.
  5. Ruthie24

    Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

    @Janet Dafoe (Rose49)- These pictures of the whole group that you have posted bring tears to my eyes (literally) as I see all the phenomenal intellectual talent that Ron has collected to help all of us. I can never express my gratitude enough. BIG thank you to all of them!! I would send hugs...
  6. Ruthie24

    Janet Dafoe in hospital

    Oh dear! So sorry to hear this Janet. Best wishes as you recover from this surgery!
  7. Ruthie24

    In Memory of Bob: A tribute from his friends

    What an incredible loss for all.
  8. Ruthie24

    Dealing with disbelieving doctor

    I have had the same experience. I used to do those muscle tests on patients and when my neuro did one on me, I told him I had 90 year-olds who exerted more pressure than he did during my supposed strength test. Those muscle tests are usually used on a person with a neurological or...
  9. Ruthie24

    Rituximab Phase III - Negative result

    Thanks! Me too. :):):) It has been slower than @Gingergrrl 's response to Rituxan but has definitely been a big improvement. I was able to dance at my sister's wedding last month. My daughter said she hadn't seen me move like that in years. And, best of all, I didn't end up in bed for days...
  10. Ruthie24

    Rituximab Phase III - Negative result

    My understanding from my ME/CFS doctor who talked to the CellTrends doctors was that participants did have the antibody tests done as part of the Mella/Fluge study. I am curious to see what the actual study papers say when they get them in print. No, I do not have the calcium channelopathies...
  11. Ruthie24

    Rituximab Phase III - Negative result

    Disappointing results obviously but I have a question. I have read that the placebo effect in studies can be as high as 30% in some studies. I also heard (trying to remember the source, but think it was my ME/CFS doc who talked to the folks at Cell Trend) that about 25-30% of patients in the...
  12. Ruthie24

    Bad CFS crash triggered by severe hypogycemic episode?!

    I have had severe crashes triggered by hypoglycemic episodes (documented by blood tests) as well as being triggered by severe reactions on tilt table tests. I have come to the conclusion that anything that stresses my "system"' (autonomic issues, hormonal, illness etc) can cause me to have a...
  13. Ruthie24

    Does CFS cause inconsistent blood sugar issues?

    I have noticed that my episodes of hypoglycemia seem to occur in clusters. I can go for weeks or months with no episodes and then suddenly start having lots of issues for several days or weeks. They also seem to occur during flares in my ME/CFS and dysautonomia. I think Ron Davis mentioned...
  14. Ruthie24

    Famvir- my story

    @darroo- Sorry for the delayed response. Just traveled to see my doc and have been recovering from the trip. I still think the Famvir and Valcyte are helpful. Have recently cut back on my doses and not doing as well. However, my doc had me doing some antibiotics for a few months as well and...
  15. Ruthie24

    Famvir- my story

    I have been on Famvir for over 3 years now and still taking it. I don't remember the Famvir helping with inflammation but I also take LDN, colchicine and anti-inflammatories which help with my joint pain, arthritis and body aches. As far as improving mentally with the Famvir, my daughter told...
  16. Ruthie24

    Does Midodrine often raise only diastolic blood pressure?

    I have noticed the same thing...that my diastolic frequently rises without much change in my systolic pressure when I'm taking midodrine.
  17. Ruthie24

    Anyone with diagnosed/suspected Mast cell activation had 23andme (or another genetic test) done ?

    I have "suspected" MCAD but my doctor is treating me for it with a whole cocktail of meds. I am heterozygous for the initial 4 which you mentioned.
  18. Ruthie24

    Finally! A good local doc and IVIG

    Glad to hear you are doing ok with the IVIG so far. I've had 2 of the "ramp-up" doses of the SCIG and will have my first full dose tomorrow. So far, so good. Keeping my fingers crossed for both of us. :hug:
  19. Ruthie24

    Supplements do not have any real effect on symptoms

    For me, I have found some supplements to be a huge help (seemingly) although I am also on antivirals and now SubQ IG infusions. I tried some of these same supplements at other times without success so I don't know if it's just the timing of when I added them in again, or if it was that I needed...
  20. Ruthie24

    Immune test results

    So...best laid plans and all that.... Just got an email from my doc suggesting I hold off starting the SCIG until after my son's wedding the end of June. He's worried side effects will be problematic. SOC- sounds like you'll likely be getting it first. :thumbsup:
  21. Ruthie24

    Immune test results

    :rofl: I would be happy to but since I'm starting SCIG next week myself, not sure it would be a good trade for ya.:oops:;) .
  22. Ruthie24

    Immune test results

    I find myself having NK Cell Function Envy. ;)
  23. Ruthie24

    Night Sweats

    I had a lot of night sweats in the first couple years of my disease process. At the time I was only diagnosed with POTS/OI but my POTS doc thought that the sweats were very common with that diagnosis and related to the dysautonomia. I had stopped having them but now am getting them again...
  24. Ruthie24

    Cause of Death among Patients with Chronic Fatigue Syndrome

    I've had melanoma, basal cell and several that are moderate-atypia...on their way toward cancer. Once I was found with the melanoma my derm has had a very low threshold for removing whatever she thinks is the least bit suspicious looking. Ironically the one that was melanoma didn't look that bad.
  25. Ruthie24

    Finally! A good local doc and IVIG

    Ha ha ha.:lol: Yeah....don't think that's gonna happen any time soon. :rolleyes: Not only would we have to be insane, we'd have to be telepathic as well. At least in my case, I didn't start researching ME/CFS until I had a whole slew of symptoms and was trying to figure out the cause. Not...
  26. Ruthie24

    Holy crap -- IgM deficiency

    My ME/CFS doc says his patients tend to run about half and half....those who "never get sick" and "those who get pneumonia if he sneezes around them". I'll just be happy when they have enough of an understanding that we can laugh about it all. :)
  27. Ruthie24

    Finally! A good local doc and IVIG

    I ran fevers ALL the time as a kid. Caught every thing that came around and missed a lot of school. But like you, never ran a fever for decades as an adult...long before ME/CFS. Makes me wonder if there were some problems already developing in the immune system that set up the ME/CFS later in...
  28. Ruthie24

    Finally! A good local doc and IVIG

    I will be curious to hear about your experience with the IVIG. I was just approved for sub-Q IG based on my labs. I am on the other end of the spectrum where I rarely get any illnesses that everyone else in the family gets but when I do....it really knocks me down for months. And even when I...