• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Search results

  1. KathySkes

    do your symptoms increase when sick with cold/flu?

    Thanks, Justy :). Sorry to hear you have been ill on top of the ME. I'm glad things are improving a bit for you too.
  2. KathySkes

    do your symptoms increase when sick with cold/flu?

    Inester, that is fascinating. I actually felt a little better than my baseline the day I was "coming down with" the cold/flu. Sorta like your experience, maybe? But last night I felt really miserable, one of those "my whole body hurts" kind of achiness that sent me to bed, so much for feeling...
  3. KathySkes

    do your symptoms increase when sick with cold/flu?

    SOC, I was wondering if it is the flu also, except that most people I have heard of who have it have higher fevers. I think a reactivation is also possible. Blech.
  4. KathySkes

    do your symptoms increase when sick with cold/flu?

    Hi all, I think I have a cold (came on gradually, congested, low-grade fever 99.1, headache, achiness but not flu-like weakness). This is the first time I have been this sick since I had pretty bad relapse about a year ago. My baseline is to have a little achiness and headache, but right now...
  5. KathySkes

    Essential oils (aromatherapy)

    I am experimenting with YL oils, they seem to be a good brand, there is a whole set of recommendations for CFS in the Essential Oils Reference Guide, I will look it up and re-post. I haven't tried the protocol.
  6. KathySkes

    Gut microbiome and environmental metals,toxins.

    I have been wondering the same thing...more and more things seem to be pointing in that direction.
  7. KathySkes

    flu shots - have you reconsidered this year?

    Clodomir, I can relate to your experience, I was also able to have a "normal" life prior to taking one dose of azithromycin last year. How long ago did this happen to you? Am I crazy to think I can get back to how I was before? Do you ever get depressed about getting the shot in the first place?
  8. KathySkes

    have flu: should I use immune-boosting supplements

    Thanks everyone, I didn't get as sick as I had feared, I had a temp of 100.6 for the first evening then none after that, and my symptoms were completely gone after several days. Maybe it wasn't the flu or I am taking better care of myself and it didn't linger.
  9. KathySkes

    Swimming risks....Long Island Sound, Devils lake....?

    I grew up swimming in Lake Erie in the summer, in the 1970s, I didn't live along the lake but my cousins did so swam when we'd visit. I remember the algae being so thick it would get into your swimsuit. Of course you couldn't see anything underwater either. Probably not the best idea looking...
  10. KathySkes

    have flu: should I use immune-boosting supplements

    Hi, I came down with the flu yesterday for the first time since knowing that I have CFS. In the past I would have automatically used immune-boosting supplements like elderberry, echinacea, etc. but it occurred to me that maybe I shouldn't stimulate the immune system since CFS may be related to...
  11. KathySkes

    Heart beat feeling like it is pounding very hard...feeling and hearing each beat

    I came down with the flu last night and couldn't sleep due to the heart pounding. However, I have had heart pounding while trying to get to sleep before, too. Glad to see this discussion.
  12. KathySkes

    What Do You All Do About The Dentist?

    I have always been pretty regular about going to the dentist until this year as I had a moderate relapse and am still recovering after nearly 11 months. Had my first cleaning today while still somewhat ill, it was okay, at first when they tipped my chair back I thought I might be going to have...
  13. KathySkes

    Meaning of relapse?

    I'm glad you asked this question, I was wondering about this too. I am having a relapse right now that has lasted nearly a year. I have noticed improvement during this time but it has been slow. The last relapse I had was three years ago and only lasted for 4 months. My baseline is about an...
  14. KathySkes

    Doctor Needed in Ohio (OH) - Northeastern or Cleveland area

    Hi, if you find someone let me know also, I am in Central Ohio but would be willing to travel (have family in the Ashtabula area). Kathy
  15. KathySkes

    was anyone worse these past two weeks? (US and Canada)

    I had it, pretty mild though so I really can't complain. I thought I had an earache at first but it turned into a sore throat and swollen gland on the right side of my throat. It was gone after a few days.
  16. KathySkes

    pure encapsulations - anyone use this brand?

    Thanks Alice and Sushi! I will try to contact Rich directly. I checked the bottle I bought from my doc (unopened, if I decide not to use it I can return it) and it contains Metafolin not folic acid. I don't know what you would get if ordering directly from the company.
  17. KathySkes

    pure encapsulations - anyone use this brand?

    Hi all, I saw my alternative MD this past week. She was trained as a neurotoxicologist so I figured she would be a good bet to work with on the methylation protocol and sure enough, she seemed to know a lot about it, although she is not familiar with Rich's specific protocol. She thought I...
  18. KathySkes

    detox diets & cytochrome P450 enzymes

    Hi Karina, My kids had pertussis and I freaked out a little, I didn't really need it. I only took the one dose, which is the first two pills of a z-pack. Sure wish I hadn't... Kathy
  19. KathySkes

    detox diets & cytochrome P450 enzymes

    Hi BEG, Thanks for your reply. I'm still learning about this p450 stuff, can you please explain why medications which are metabolized by p450 are ones to avoid? I thought there were different enzymes that fall under the p450 umbrella and the bad reactions are from the individual enzymes a...
  20. KathySkes

    detox diets & cytochrome P450 enzymes

    Rich, thank you this is so helpful. I am glad I asked. I am thinking I will go back to another alternative MD who I have been seeing for many years to see if she will help me with the methylation protocol. Take care.
  21. KathySkes

    detox diets & cytochrome P450 enzymes

    Hi Rich, Thank you so much for your response and the information about the Flockhart table. I am in awe of all the amazing work you do for everyone. I have a few questions: 1. I asked this MD if he had heard of methylation and he said yes, that the Metagenics detox diet (called the Clear...
  22. KathySkes

    what do you think about this?

    Thanks Nielk, I am sorry you had a bad reaction to Cipro, there is a lot of support out there for others who, like you, have been "floxed"--on Facebook, and there are a few websites. Azithromycin is a macrolide antibiotic, so not one of the fluoroquinolones, but I had some of the same symptoms...
  23. KathySkes

    what do you think about this?

    Ocean, I am sorry you had a bad reaction to this stuff too. I saw an integrative medicine doctor on Tuesday and he suggested that my liver is deficient in the cytochrome P450 enzyme that metabolizes azithromycin and wanted me to look up which one it is, which by the way I am having trouble...
  24. KathySkes

    detox diets & cytochrome P450 enzymes

    I saw an integrative medicine doctor on Tuesday. He diagnosed me with CFS (no surprises there) and suggested I look up which of the cytochrome P450 liver enzymes metabolizes azithromycin (the antibiotic I took which caused my current crash), because apparently I'm deficient in it. His...
  25. KathySkes

    what do you think about this?

    Thanks, vitamink. No, I haven't done much testing yet since this is all still relatively new for me. Definitely something to consider.
  26. KathySkes

    what do you think about this?

    Thanks adreno!
  27. KathySkes

    what do you think about this?

    oh yes, I also have tinnitus which began as soon as the antibiotic hit my bloodstream and has been continuous since then. I guess this is also a CNS symptom? Although I don't hold out much hope that there is anything that can be done about it.
  28. KathySkes

    what do you think about this?

    well no, I have extreme disabling fatigue, but that is a given with any kind of CFS so I didn't mention it. I guess what I am looking for is an answer why an antibiotic would cause a crash to see if there is anything I can do about it. Also to see if methylation protocol is something I should...
  29. KathySkes

    what do you think about this?

    The methylation defect connection is made on page 29 of the article in the link above, FYI. I should add, I do not have what I would call FM (achiness but not pain, per se), but I am experiencing some CNS symptoms such as anxiety, some insomnia/sleep disruption, and digestive issues. I...
  30. KathySkes

    what do you think about this?

    My current crash and moderate level of CFS was triggered by one dose of an antibiotic, azithromycin. I have been curious why an antibiotic would do this so that I might have some idea of which direction to go in treatment. At first, not knowing what was wrong with me but knowing that an...