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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. bdonovan

    Sick Constantly since on Rituxan

    A good question; CFCD has me doing regular blood work; but since there's been nothing alarming they've directed to me, I didn't think about it. Will check, thanks. I understand there is an expected reduction from rituxan, right?
  2. bdonovan

    Cannot handle long drives

    Do you believe this is related to chronic fatigue? Since having CFS, I cannot drive in a car for a long period. If I drive between San jose and San Francisco, a 1 hour drive, I am shot for the rest of the day. I have no energy. I lag a bit the next day (until afternoon). I've minimized my...
  3. bdonovan

    Sick Constantly since on Rituxan

    You can see my thread here on PR when I started Rituxan on Dec 18, 2017. Today is June 5, 2018; so it's coming up on 6 months. Very little change to my well-being, strength. Have had 3 infusions. However, one big change is I'm sick constantly. I began to get sick mid-March. Cough, yellow...
  4. bdonovan

    Started Rituximab at OMI/Center for Complex Diseases

    I have exertion intolerance; my body would react negatively when I would do anything with my arms, legs, any physical exertion. People would say "well thats normal after you exert yourself or lift". But I've been weight lifting for over 10 years before I got chronic fatigue. I know the...
  5. bdonovan

    Started Rituximab at OMI/Center for Complex Diseases

    Hey all, Regret the delay in updates. The main reason for no updates is I haven't noticed much change. I just had my 3rd infusion last week. My fatigue goes up and down (though overall fatigue is significant) just as it was before rituxan. I've been told that many don't feel much until 6...
  6. bdonovan

    Started Rituximab at OMI/Center for Complex Diseases

    I am just over a week in. So far, so major changes. I have however felt somewhat increased: *Sleepiness & grogginess (feel from wake till about 4 PM) *Some shortness of breath first few days; less now *Tension in muscles The tension in my muscles is more than usual. No idea if it's connected...
  7. bdonovan

    Started Rituximab at OMI/Center for Complex Diseases

    I'm not familiar with IVIG. I seem to recall reading a few accounts of it here but my doctor never brought it up. Thanks I hope so too!
  8. bdonovan

    Started Rituximab at OMI/Center for Complex Diseases

    Like many, I've had so many tests I lose track. I just record the ones I'm positive for, which were the ones I listed.
  9. bdonovan

    Started Rituximab at OMI/Center for Complex Diseases

    I don't have that particular symptom. And thanks, hoping for the best.
  10. bdonovan

    Started Rituximab at OMI/Center for Complex Diseases

    I didn't have my paraneoplastic autoantibodies tested? Did you find that test useful in your case? IVIG: it was never brought up. Not sure why. My symptoms are mainly exertion intolerance- whether physical or cognitive. Physically, I'm not able to walk more than a few blocks though I used...
  11. bdonovan

    Started Rituximab at OMI/Center for Complex Diseases

    Hi Gingergrrl, I got the standard 1000 mg infused in 500 ml of saline (and a total of 1.5 liters of saline). That's interesting; I'm not familiar with the body surface area option. Re: Antibodies- see above, I posted my results. Re: >I agree that there is a group of people who are...
  12. bdonovan

    Started Rituximab at OMI/Center for Complex Diseases

    Thanks. Here are some of my test results: anti-Muscarinic Cholinergic Receptor 4 - Antibodies 29.7 (>>7 = positive) Anti a1- adrenergic Antibodies 16.2 (>>7 = positive) More recently, regarding auto-immune, my Cunningham panel results showed elevated levels for: Anti-Tubulin...
  13. bdonovan

    Started Rituximab at OMI/Center for Complex Diseases

    Yesterday I had my first infusion and I take it again early January (about 2 weeks from my first dose). So far, it's gone fairly smoothly. No allergic response to the infusion. The only negative aspect was felt very cold from the saline infusion; was not prepared for how uncomfortable that...
  14. bdonovan

    Glutamine versus Glutamate

    A bit of confusion on this one. I had been ramping up the amount of glutamine from None to 10g/day and had been going fine. I was doing so because glutamine helps against leaky gut; repairs the gut's mucosal lining. I have had bad SIBO symptoms; and although anti-biotics and anti-parasitic...
  15. bdonovan

    Adding Vegetables and Herbs to Diet

    Thanks all for the feedback! Will make some adjustments and see how it goes.
  16. bdonovan

    Adding Vegetables and Herbs to Diet

    OMI had put me on Interfase Plus which has a bunch of different enzymes including some that help with plant digestion: cellulase (helps digest cellulose/fiber in fruits, vegetables, grains, and seeds), Hemicellulase (digesting Plant Fibers). Although I do wonder if I need extra dosage for these...
  17. bdonovan

    Adding Vegetables and Herbs to Diet

    I thought it was a useful appointment. I suspected nutrition would make a difference, but I didn't realize what a major effect it would have on the body. I'm trying to calibrate now what works for me and what perhaps is causing more of a reaction. I will get in touch with her and get her...
  18. bdonovan

    Adding Vegetables and Herbs to Diet

    Yes, from Dr. Reid.
  19. bdonovan

    Adding Vegetables and Herbs to Diet

    I have a question on how CFS'ers handle influx of vegetables to their diet. I'm being treated at Open Medicine Institute. Over the last few months, on courses of Rifaximin, taking Valtrex, and many other supplements, I've made progress and feel better. My SIBO symptoms have mostly gone away...
  20. bdonovan

    What is the Connection between SIBO and CFS

    I understand that many who have CFS also have SIBO. I read an article which describes a possible connection- exertion leading to more gut bacteria (SIBO) which spill over into the blood, leading to an immune response (CFS). But was hoping people might explain if this is the prevailing theory...