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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. toyfoof

    Jarisch–Herxheimer reaction

    Honestly the only ones that I feel do anything are the lysine (I’ve been taking it for years to prevent cold sores) and the valtrex, which limits the flu-like symptoms of PEM. But my doc wants me to stay on the other two for antiviral properties, I may not feel anything but theoretically I’d be...
  2. toyfoof

    Migraine can be responsible for distressing symptoms throughout the body. This is interesting!

    It’s now Sunday and I got the nerve blocks on Wednesday. I crashed Thursday, but since then have been feeling pretty good — a bit above my baseline. On Friday I did my PT exercises using the next step up bands — so more resistance on all the exercises. I prepared for a crash, but none came...
  3. toyfoof

    Chronic fatigue syndrome a possible long-term effect of Covid-19, experts say—CNN, Ryan Prior

    Alyssa Milano was on Cuomo Primetime this week talking with him (and a doctor) about how they both had COVID at the same time and they both have lingering symptoms and don’t know what to do. The doctor said to check in regularly with her doctor, but they ran out of time and didn’t really get...
  4. toyfoof

    Will you have a 'flu vaccine this year?

    I get the flu vaccine every year. Never an issue. I will, however, wait on the COVID vaccine. I don’t trust the way everything is being rushed and feel there is significant political influence driving the rush. I follow a lot of virologists and immunologists that don’t have a financial or...
  5. toyfoof

    Migraine can be responsible for distressing symptoms throughout the body. This is interesting!

    Yes, she’s a neurologist who specializes in migraine. She’s young, I think fresh out of fellowship, so maybe there’s hope that the new generation of doctors will be a little more holistic and open minded. She was so pleased when I told her my IBS was better and we laughed about how it took a...
  6. toyfoof

    Migraine can be responsible for distressing symptoms throughout the body. This is interesting!

    I just started seeing a new migraine specialist who is actually treating my whole body. She diagnosed my IBS-D as MCAS and put me on cromolyn sodium (it’s helping), plus she diagnosed me with POTS and EDS. We’re attacking the migraines with a number of treatments, because I’ve been overusing...
  7. toyfoof

    Jarisch–Herxheimer reaction

    My doc has me on monolaurin, olive leaf extract, and l-lysine in addition to valtrex for antiviral.
  8. toyfoof

    Jarisch–Herxheimer reaction

    Are there any plans to up your dose? I think you want to be on at least 2g, possibly up to 4g to get your infection under control. You may not be noticing anything because your dose is too low.
  9. toyfoof

    Jarisch–Herxheimer reaction

    I just checked my latest titers -- EBV EA = 35.5. My numbers have been about the same for the past couple years.
  10. toyfoof

    Jarisch–Herxheimer reaction

    Honestly my doctor is mostly interested in managing symptoms. We test for EA titers every few months to make sure there hasn’t been a big spike (or a surprising but welcome drop) but there is direct correlation between amount of Valtrex I take and severity of flu-like symptoms. On 1g per day I...
  11. toyfoof

    Jarisch–Herxheimer reaction

    I’ve been on it for nearly 3 years now. I’m currently at 2 grams a day, but have been as high as 5. My EBV titers tend to be pretty consistent, I can’t remember off-hand now what they were (I just had them done recently and doc said they were high but not alarmingly so). If I remember tomorrow...
  12. toyfoof

    Jarisch–Herxheimer reaction

    I never herxed from Valtex. The only thing that ever caused me to herx was olive leaf extract. It’s good that you’re aware of the possibility, though, so you’ll hang in there if it happens.
  13. toyfoof

    "Women who survived coronavirus angry after persistent symptoms dismissed as ‘anxiety’ by doctors." Doesn't this sound familiar?

    This stuff goes so far back. I remember learning in 6th grade biology class about psychosomatic symptoms. The example the teacher gave was, say you have a big test and you’re worried about it, and you wish you could somehow miss school, and your body takes over and gives you a headache that you...
  14. toyfoof

    Narrowed Small Blood Vessels Linked to Fatigue in ME/CFS - HealthRising

    @andyguitar and @Learner1 thank you! This is all good info for me to dig into before my next appointment, and then go over with my doctor. I do have chronic, active EBV infection (I just had my titers done and they were high) and have had HHV (I can’t remember which one) active in the past as...
  15. toyfoof

    Narrowed Small Blood Vessels Linked to Fatigue in ME/CFS - HealthRising

    Interesting. I've never really looked into Rituximab for me. Forgive me if this is obvious, but would Rituximab be an option for this particular issue? Or are you just using it as an example of a similar intervention?
  16. toyfoof

    Narrowed Small Blood Vessels Linked to Fatigue in ME/CFS - HealthRising

    Well, it's good to have some hope, even if it costs $20k and will likely never happen. . . Do you know, are these autoantibodies present in all people, or would it be worth trying to test for them to see if I even have them?
  17. toyfoof

    Narrowed Small Blood Vessels Linked to Fatigue in ME/CFS - HealthRising

    I've never done any infusion treatments, but I imagine it's in line with those types of treatments. It's certainly much cheaper than the $80k+ spinal surgery I had last year (all covered by insurance, luckily). I have new insurance now (through my boyfriend) which is not as good as my prior...
  18. toyfoof

    Narrowed Small Blood Vessels Linked to Fatigue in ME/CFS - HealthRising

    Well, there goes that idea. :xeyes: Maybe this is at least a lead to other ideas for getting the same results . . . ? I think I am going to send this paper to my doctor and see what he thinks. All his efforts to improve mitochondrial function in me fail. Maybe because my case is vascular...
  19. toyfoof

    Narrowed Small Blood Vessels Linked to Fatigue in ME/CFS - HealthRising

    Exactly my thought!
  20. toyfoof

    Narrowed Small Blood Vessels Linked to Fatigue in ME/CFS - HealthRising

    The science of this paper is way over my head, but the descriptions of how their theory presents in ME/CFS symptoms — particularly as laid out in Table 5 — really resonate with me. Does anybody know if having the quoted procedure is a “one and done” type thing, where the autoantibodies removal...
  21. toyfoof

    Medications and Personalized Side Effects

    I am glad I checked in here, you all are helping me cheer up. Yes, there was a magical two weeks or so. I wish I knew what happened. The good news is, my neck is much stronger now, and while I still have some pain, it’s sloooooowly easing with the limited PT I can manage. @YippeeKi YOW !! I...
  22. toyfoof

    Looking for a ME doctor in Southeast Michigan

    @Gratefulheart yep!
  23. toyfoof

    Looking for a ME doctor in Southeast Michigan

    I haven’t read the other threads on Dr. Conley, but he’s my doctor, and while he isn’t perfect (perfect would be a cure which we know isnt possible), he is good at doing some deep dives and will prescribe antivirals, thyroid meds, and LDN (probably more, that’s just what he’s done for me). He...
  24. toyfoof

    CCI SURVEY – for all ME/CFS patients tested for CCI and related conditions (please answer whether tested positive or negative)

    I had ACDF on December 3. It's too soon to tell, but so far, so good. In a few weeks I'll post more thoroughly on my results.
  25. toyfoof

    CCI SURVEY – for all ME/CFS patients tested for CCI and related conditions (please answer whether tested positive or negative)

    In addition to ACDF, the other common stenosis surgery is ADR, artificial disc replacement (which replaces the discs but does not include a fusion).
  26. toyfoof

    Which Cervical collar OR traction to try and how to use?

    I rarely wear mine — just for car rides. It’s more of a safety measure to keep my neck from jostling. My main issue is cervical stenosis lower down on the neck and my surgeon recommended the soft collar for that. It does seem to keep the pain from spiking, a result of keeping my neck from moving...
  27. toyfoof

    Which Cervical collar OR traction to try and how to use?

    Hi @Tella I do have CCI and some other cervical neck stuff, but I only have a soft collar so I can’t provide any personal recommendations. However, I’m in a couple groups that discusses collars regularly, so I’ll share what I know. I believe the main neurosurgeons recommend either a Miami J...
  28. toyfoof

    Need some help with craniocervical imaging analysis!

    Hi @Scotty81 — just like your daughter, I did do the rotational views. On the CD I received, I could see the images, the ones that look like you’re looking at the head/neck from the side, and you can see up and down the neck. I believe these are called sagittal views. The views Dr G wants...
  29. toyfoof

    Need some help with craniocervical imaging analysis!

    This exact same thing happened to me, and Dr. G just did his report without the information. As Hip says, the rotational views are only needed for the AAI diagnosis (C1-C2), and from what my report says, he can still get an idea. He said that AAI was likely in my case based on what he could see...
  30. toyfoof

    EDS patients—have you ever had a physical therapist “tape you”?

    Oh interesting, mine was not cut round (she had done it the last times) when it burned me. Also FYI the little packets my PT gave me to prime the skin before getting taped are called Cavilon by 3M, no sting barrier film.