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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. P

    Does anyone else share my "up and down" response to antibiotics?

    I've been sick for upteen years so I'm sure I have posted on this somewhere before but I never gotten much help with it. As one who was diagnosed with lyme disease (but clearly seem to fit into a cfs profile even more than lyme) I have taken many antibiotics. I always get the same response...
  2. P

    Dr Boomershine Vanderbilt TN

    I would appreciate it if anyone can report any experience or knows anything about Dr. Boomershine or any other docs in east or central Tennessee. Thanks.
  3. P

    Phentermine

    Thanks for your support. I agree with what you said. I never imagined I would be asking about stimulants as it is obvious our bodies cannot support the energy use and a stimulant will cause some level of PEM and possibly longtime worsening. But here I am after 15 years of trying seemingly...
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    Phentermine

    Thanks, this is kind of what I expected to hear. Curious if anyone is able to take any stimulant once or twice a week to get a couple of decent days without big crashes (assuming you don't way overdo)?
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    Phentermine

    I know stimulants are not an everyday solution but I've been ill for 15 years trying literally hundreds of different things. I've taken phentermine on a random handful of (not consecutive) and always feel vastly better mentally And physically. Knowing I can't take this everyday I am just...
  6. P

    Talking / mental fatigue

    I know this is not a new topic. Too mentally fatigued/overstimulated to do search. Does anyone else feel most worse just when trying to talk (especially while sitting upright), process images, compose a paragraph than doing menial physical tasks? It is not just the brain fog but complete...
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    Scared to start abx

    My opinion, based only on my personal experience and reading others stories--not real science or any actual knowledge of medicine--is that if your ONLY reaction to abx is skin related it is probably not a herx but drug reaction. I attribute my abx reactions to herx, which are commonly...
  8. P

    quercetin as anti-TNF?

    Of the dozens and dozens of things I've tried quercetin is the only supplement that can make me feel a little better. nothing miraculous but takes the edge of sometimes and can help sleep.
  9. P

    Scared to start abx

    Can't say abx were a big success story but did come out feeling better eventually-- can't stay on them forever. Never got rid of lyme or whatever other chronic infections I have. The herxing was very difficult for me and never ended--some symptoms improved but it was slow and nothing close to...
  10. P

    valtrex

    Yes, thanks, I drink plenty of fluids--this low dose of valtrex just kicks my butt, which has surprised and mystified me.
  11. P

    valtrex

    I started valtrex about a month ago and started a thread: http://forums.phoenixrising.me/index.php?threads/strong-and-quick-reaction-to-valtrex.19057/ After starting at really high dose, I've been taking .5 g per day for 3 weeks and still am functioning below baseline: tachycardia, out of...
  12. P

    Strong and quick reaction to Valtrex

    Reduced dosage down to .5 g x 1 daily. Still have additional fatigue, tachycardia, out of breath with minor exertion, forgetting everyone's name, muscle fatigue. Have all these symptoms normally but worse on valtrex. Symptoms not nearly as bad as original dose, and I think after 10+ days at...
  13. P

    Strong and quick reaction to Valtrex

    Did this reaction happen within the first few days? And did you later see any improvement? Thanks all, this is very helpful,and yes, I am drinking a lot of fluids.
  14. P

    Strong and quick reaction to Valtrex

    Helpful, thanks for the response. I knew this about antivirals not really killing, which is one reason I was concerned. Yes, i went straight to the high dose. I wasn't told otherwise. Ebv titre was as high as could be listed. Hhv6 was also high but not as high as could be listed (i am...
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    Strong and quick reaction to Valtrex

    Started valtrex two days ago 1.5 g x 3 daily, rxed by Dr. Lapp. Now have enhaced fatigue, agitation, depression, flu feeling--really laying me down. No gi problems. Although i did have off the chart igg titres for ebv I wasn't expecting anything from this drug, esp within day or two. I...
  16. P

    Antibiotics cause these symptoms....why?

    Sounds just like a herx to me. Tachycardia and the flu symptoms--classic herx.
  17. P

    need to verify 50% = mild ME before I post this on FB

    These kinds of scales are not really useful for me. For example there is a huge difference for me in "lying" and "sitting down" because of orthostatic issues. "Light activity" sitting upright is very different that "light activity" in recliner. Also, for those of us with more severe mental...
  18. P

    The benefits of early diagnosis

    The CDC used to have a similar statement regarding the critical importance of getting an early diagnosis, at the same time mentioning there is really no treatment for CFS (I don't know if the CDC still has this statement). Considering the near total ignorance of most doctors and CFS, I doubt...
  19. P

    Over active immune system and Imunovir

    Soxfan, I know where you are coming from. Although I also have POTS the brain overstimulation/mental fatigue can be torture, often the worst symptom. My body and mind and just wired up even when nothing in particular is making me stressful at that moment. Just won't calm down. Just curious...
  20. P

    Preserving the male essence/seed

    Doesn't make any difference for me. Sex or abstain, equally ill. This is another one of those attention getting suggestions that belittles the magnitude of illness IMO.
  21. P

    Dr Lapp's Stepwise Approach

    Yes, I basically agree this is the way many of us not bedridden already try to function anyway. I don't think the idea is so novel. I think maybe his time periods of activity/rest (3-5 min) are shorter than it takes to do some actual tasks or find stopping point. I get the impression that...
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    Americans on Disability - milking the system

    There is definitely an increasing inclination in the US to blame anyone that is struggling or not a "job producer" as a second class citizen without any regard to how they may have gotten into that situation, disability included. At the same time, there is an inclination for extremism over...
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    Dr Lapp's Stepwise Approach

    I can certainly appreciate the frustration expressed here, esp if one can hardly get out of bed. The one thing Dr. Lapp tries to emphasize is that doing activities in small chunks with repeated rests works better than larger chunks with larger rests. He has a very conservative approach and...
  24. P

    List of low-energy activities appropriate for PWMEs

    Just goes to show how symptoms are vastly different. A jigsaw puzzle would be agonizing torture, one of the least relaxing and most damaging activities I can think of--with the mental fatigue, agitation, overstimulation. Would make me physically ill with weak legs, fatigue, achy. Just...
  25. P

    Describe your PEM

    It would make me feel ill just trying to answer all seven of these questions properly. I just wanted to add that the worst PEM/PENE symptom I have is PENE related. Mental activity, simple things like talking, reading or doing what I am right now can really make me feel ill. PENE can spring...
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    Jason and Evans: To PEM or not to PEM? That is the question for case definition

    I don't have the mental stamina to read all this, so my point may be off topic or something old. I just wanted to add that I just now read about PENE and the ICC. Wow, this really describes my illness so much better than all other definitions I have read. For me, the "PENE" problems are...
  27. P

    My doc recommended IV Silver Hydrosol for CFS...has anyone tried it or know about it?

    Why would it depend on symptoms? Silver is used to kill infectious agents. The OP said they tested + for EBV, CMV, Parvo so clearly has some serious chronic infections going. Isn't the proper question to ask is whether IV silver effectively kills these chronic infections either in lab setting...
  28. P

    My doc recommended IV Silver Hydrosol for CFS...has anyone tried it or know about it?

    I have been diagnosed with lyme. I definitely have chronic bacterial infections. I did a number of IV silver treatments (Argentyn 23). I got the same response that I got with antibiotics (IV and oral)--strong herx reaction but no real long term resolution. I've never heard of anyone's CFS...
  29. P

    CFS is a Bacterial Infection

    Just to address the title of this thread I think it is a clear consensus that CFS does not equal bacterial infrections. Many of us would have been cured or close to it. However, bacterial infections often play a role in CFS and many of us have those infections as part of our chronic illness...
  30. P

    Anyone else face "Notice of Continuing Disability Review"? Let's talk!

    As I am not a regular poster, I did not know this about hubcap_halo but just did a search and found the very sad thread. It does make you cry. Whatever the exact reason, as a fellow sufferer it is sure easy to sympathize. I wouldn't want to speculate either about the circumstances in his...