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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. equestrian111

    high mvp ?

    Just had some routine blood work and it came back with high mvp blood levels. Have been on ldn for about 6 weeks. Does anyone know if ldn could cause high mvp?
  2. equestrian111

    Pulsing Equilibrant

    They sent me an email with a number to call for ordering. Website problems.
  3. equestrian111

    Pulsing Equilibrant

    May I ask where you bought the equilibrant ? I went to the website but did not see any order link.
  4. equestrian111

    Tissue/Organ donation

    Wow. What made them look their for HPV? And in the lymph nodes. I have had 2 bouts of it 20yrs ago and then 10 yrs ago. With women it shows up..with most men there are no symptoms. Men can just be carriers. I too am terrified to have sex and get this back. Last time took 6 mo to get rid if it...
  5. equestrian111

    Open Medicine Institute ME-RIT Initiative - Objectives Agreed

    Thanks for posting this. There is light in this tunnel. They are bringing medicine and research into the 21th century by linking info world wide. Very geek...yeah...maybe the Dr of tomorrow will be more informed and interested in learning. No more excuses. One Dr I went to , an...
  6. equestrian111

    can stress cause major crash?

    Prn2008 I will ask my Dr about klonopin. Seems like that's what most cfs take. Wonder why stress sets our bodies into such a downward spiral. Just everyday life stuff. I think stress might have been my triger for this illness. Plus some mold thrown in
  7. equestrian111

    can stress cause major crash?

    Accra, what type of magnesium was that you suggested?
  8. equestrian111

    can stress cause major crash?

    Afcfs Thanks for the reply. I tried magnesium and it worked like a laxative..so I stopped. It's weird. I take .25 xanax in am and it usually calms me for the day. If I don't take it, I get shaky and heart palps. If I'm having a good day..I can sometimes skip a day. But that is maybe once every...
  9. equestrian111

    can stress cause major crash?

    Thought I was climbing up out of hell. Along comes some stress and boom...down. chills which lasts all day...eye twitches..light headedness. Just when I was having glimpses of my old self...am taking xanax at a low dose. On the one hand, I'm terrified to take more. But then if it gives me some...
  10. equestrian111

    Combination of 3 key treatments has me feeling significantly better

    Dumb question. Is a dry sauna at the gym, the same as an FIR sauna? When I use the dry sauna..I'm good for about 5 minutes before I get light headed.
  11. equestrian111

    Comment by 'equestrian111' in 'CFS Specialist Visit'

    May I ask what Dr you saw.?
  12. equestrian111

    This Sunday, Nov 18: Memorial Teleconference for Rich Van Konynenburg

    I was stunned when I logged on to pr to hear of Rich's passing. I am deeply saddened. Like most of you..I never met him. But when I was new to pr and posted an uninformed question. He was right there to guide me thru the maize. I will forever be thankful. He gave me hope . Thank you Rich .
  13. equestrian111

    progess report..feeling almost normal

    In the beginning I was down and out after I did anything. Swimming , for some reason helped with the light headedness. Didn't feel like I was going to passout when I was in the water. Getting out of the pool was another story. I would have to go home and lie down. Just seems like it got better...
  14. equestrian111

    progess report..feeling almost normal

    I followed fredds b12 protocol. Also b12 injections are methylb12.
  15. equestrian111

    progess report..feeling almost normal

    I realize that when you start to climb out out of hell , you don't logg onto pr. But maybe my journey might help Someone else. Sick for approx 1 1/2 yrs with light headed, shakes, chills, extreme fatique. Bed ridden. Left my 300yr old farm and moved in with 86yr old mom. Felt mold was the...
  16. equestrian111

    Help! Very sick from IV push

    Mimi I had iv about a month ago and was totally down and out for weeks. Where the iv was in my hand...had burning for the 2hr drip. Had to use ice pack for whole time. Dr said some people get flu like symptoms for a few days, then feel better. He wanted me to do this 2x week. Am afraid to do...
  17. equestrian111

    B12 shots...helping or masking?

    Hi Fredd, Crash symptoms are light headed..no energy, shakey, heart palpatations. Totally down and out. I am currently taking B12 injections 3x week. Daily I take valtrex 1 gm 3 x day, .25 xanax, monolaurin 3x day, allegra, enzmatic therapy b12 infusion 1 x day, dibencozide b12 1x day, perque...
  18. equestrian111

    B12 shots...helping or masking?

    Fredd What is LCF? Have been on your b12 protocol and have had a good week. But crashed today. Not sure if I got a Mold hit or took too much of dibencozide b12's. Is it that delicate a balance?
  19. equestrian111

    B12 shots...helping or masking?

    Sushi Did you continue with vitamin iv?
  20. equestrian111

    B12 shots...helping or masking?

    Hi sushi, Yes there was. They added it at the end. Dr wanted me to have this iv 2x a week. No way. Never again. The iv burned the whole 2 hrs of the drip. I had ice packs on it the whole time. Just didn't seem right.
  21. equestrian111

    B12 shots...helping or masking?

    Update. Had iv vitamin-amino acid drip a few weeks ago and really crashed for about 2 weeks. Have been on b12 injections for about 3 weeks and started Freds methyalation protocal a few days ago, and feel like my energy is slowly coming back. I am also on valtrex and Monolaurin for the past...
  22. equestrian111

    Bad reaction to IV vitamin therapy

    When I was having the IV it was burning where the IV was and I had to have ice packs on it for the whole 2 hrs. Yes I was nervous but took my xanax which calmed me down. My Dr said that sometimes people have a flu like reaction for a day or two and then feel good. It's been 5 days and I am just...
  23. equestrian111

    Bad reaction to IV vitamin therapy

    My new cfs Dr. started me on b12 injections and after a week of daily shots, I started to broke less and less fatigued. Progress yeah!!. He them wanted me to start IV vitamin infusions 2x a week. Had my 1st one on Wed and crashed for 3 days. Back to where I started. Any one have any ideas on why...
  24. equestrian111

    B12 shots...helping or masking?

    Tristen. I have had my b12,checked. It was down. I took supplements and levels came. Up. Was checked for anemia..not the problem. I am glad to hear that b12 shots keep working. I was concerned that I might build a tolerance to it. How long have you been on it?
  25. equestrian111

    B12 shots...helping or masking?

    I have been sick for 1 1/2 yrs now. Extreme fatigue, nervous, shakey, chills. Down and out and unable to work or get off the couch. Been on xanax to try to calm things down. Monday I got my 1st b12 shot. Today I was NORMAL. My allergies were gone, as was my nervousness. I had energy. It was...
  26. equestrian111

    Comment by 'equestrian111' in 'Mitigating Crashes'

    Have you checked your leptin levels? Richie Shoemaker talks about leptin resistance and energy crashes in his book Desperate Medicine.
  27. equestrian111

    Mold plate exposure test

    Don't clean floor before you do test. Let some dust remain. Not clumps, but just normal. Even if you can't see it..there is dust.
  28. equestrian111

    Mold plate exposure test

    Wish my phone didn't suggest words. Meant Google ERMI
  29. equestrian111

    Mold plate exposure test

    With the ermi test you vacuum the floor or rug in front of couch and in bedroom. Mold spores in the air in supposedly unreliable. Mold in the dust that has settled is a more thorough way to test. So they say. You can read up on it at Dr richie shoemaker web site or Google reno testing. The petri...
  30. equestrian111

    Mold plate exposure test

    I used the ermi mold test that Dr shoemaker suggests. you can go online a buy it and they will mail you the kit. you then attach it to your vacumne and mail it back to them. they send you a very detailed analysis of each mold found and the count. mine was very high..after remediation. but my...