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

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Search results

  1. L

    MTHFR Mutation A 1298C single copy

    Hi All, It's been awhile since I've posted here. I was tested for the MTHFR gene and had Mutation A1298C Heter. Any suggestions? I've done a little research but not much. Dr Lynch has great info. He also said a single copy of the 1298C wasn't harmful. Sooooo, should I be concerned? Thanks...
  2. L

    Hypersomnia

    Hello, My sleep study test revealed I was borderline narcolepsy but the doctor said I had hypersomnia. I guess if there is a silver lining its w/a dx of narcolepsy you get your drivers license pulled... It really is very debilitating. I haven't tried drugs yet just too afraid. So I was...
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    Active B12 Protocol Basics

    Hello, Once again I'm trying to sort all this out w/no brain power...so sorry for the questions... Looked @ fredd's protocol and it says Country Life Methyl B12.....I couldn't find this except 5000 mcg and why Enzymatic Therapy B12 and the Country Life Methyl B12?? Thanks for your help and...
  4. L

    Active B12 Protocol Basics

    Hi, I've searched for the sublingual enzymatic therapy b12 and not having any luck. all I see is chewable. Can someone tell me where to buy this ? Thanks :)
  5. L

    Active B12 Protocol Basics

    thanks everyone for the info :)
  6. L

    Active B12 Protocol Basics

    Hello Freddd I haven't been here in a while and wanted to know if you could give me an update on your protocol. I really don't have the brain power to go through all the post. thanks so much
  7. L

    Ever heard of CCSVI ?

    Hello All, I accidentally found an interesting article about CCSVI, Chronic Cerebrospinal Venous Insufficiency. I had never heard of this and started doing a little digging. It really got my curiosity going. I'll leave the info and you can decide for yourself. I am going next month to...
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    Comment by 'Lee Ann' in 'My Story of Hope Recovering from CFS'

    I tried to follow the protocol. Even did the coffee enemas. Fun fun. Maybe I gave up to quickly. When you don't feel well, it's difficult to juice 12 times a day and prepare everything. I believe in the therapy, I still juice and do the enemas however not to the extent Gerson suggests. The...
  9. L

    Part 2

    Hi everyone, I got the results of my first sleep study test, no sleep apnea. The doctor strongly suspects I have narcalepsy and wants me to have a day time sleep test. Has anyone here been diagnosed with this disorder? I'm not sure how I feel about this. I have been told so many things, its...
  10. L

    Dr. Charles Lapp

    I've been to the clinic and would recommend you see Dr. Lapp. I also had the tilt table test done there and supposedly failed it. Within three months of that, I was seen at Vanderbilt and all the test were normal and was told I did not have POTS like I had been told at HHC. Vanderbilt doesn't...
  11. L

    Birth month poll

    January for me. I'm a capicorn.
  12. L

    AKG

    Hi everyone, I was watching a show this morning (The 700 Club) about a treatment for ALS called the Deanna Protocol. In the protocol, the main supplement used was AKG. It gives energy to the cells. Has anyone used AKG? It's so incredible that a doctor whose daughter has ALS developed this...
  13. L

    Your lips move but I can't hear what you say...

    Thanks everybody for your input. It's helpful knowing that what I am feeling is not my imagination. I'm having a sleep test done in a couple of weeks. I'm also having a test(don't know the name) to check the blood flow in my brain and an EEG. Maybe a SPECT too. Hopefully, someone can give...
  14. L

    Your lips move but I can't hear what you say...

    I've read lots of post here of people describing their fatigue. What I experience (fatigue) doesn't seem to be what most people describe. I just saw a neurologist last week hoping to get a "new set of eyes" on what's going on with me. The only way I could describe my feeeling of "fatigue" to...
  15. L

    Important Question

    Hello Everyone, I would like to ask a question and get your feedback. Like many of you, I have been told many different things by different doctors. I have been told I have atypical ME/CFS but here is the confusing part. I was also told that the fatigue had to pre-date all other symptoms...
  16. L

    What Types of Fatigue Do I Experience Poll

    CAcfs, That is EXACTLY how I feel. Mine starts out subtle and then becomes more intense. I have NO choice but to lay down. There is no "pushing myself through it". If I do not lay down, I feel as though I will drop to my knees. I feel like I am the only person on the planet who has this...
  17. L

    CFS/ME as a Liver issue

    Coffee enemas are suppose to cleanse the liver. The book " Healing the Gearson Way" explains how it is done. I'm sure you can get the info on line.
  18. L

    Epstein–Barr virus infection induce chronic fatigue syndrome

    Hello Everyone, My EBV titers were elevated but I was told by a doctor who is well informed with CFS that in order for an anti viral to be effective, the EA has to be elevated and more than once. Since my Early Antigen was negative, the doctor decided the anti viral would be of no use. I am...
  19. L

    Revised Glutathione Depletion--Methylation Cycle Block Hypothesis for ME/CFS

    "I know that it is unpopular with some to suggest that psychological or emotional stress is a factor in causing some cases of ME/CFS, because they interpret this to mean that there must be a psychiatric problem or a character flaw involved. I don't see it this way at all. The fact is that the...
  20. L

    The difference between MS and ME

    Hello Annesse, My symptoms were gradual over a period of about 15 months. The fatigue was the very last symptom and the most life altering. I have always been an active person. Running was one of my passions. You had mentioned in a previous post about exercising. I was in a state of...
  21. L

    The difference between MS and ME

    I had an MRI and the neurologist told me that a clinical test was done on people who did have MS. They gave them an MRI everyday for a year. Some days the MRI detected lesions and other days, it did not. I've only had one and the neurologist wanted me to have another one. I declined. If it...
  22. L

    Do You Have Fibromyalgia

    I don't have fibro. The crushing fatigue is my main life sucker.
  23. L

    The difference between MS and ME

    Annessee, For about 7 yrs, I went w/out eating red meat. Heart disease took my father when he was 60 so I thought I was doing "my body good" by eliminating red meat. I was very ignornant to the fact that B12 and B's were essential and I never supplemented. How foolish was I. I would rather...
  24. L

    The difference between MS and ME

    Hi Annesse I was tested at Vanderbilt and had no signs of autonomic dysfunction. I will say when all this began, my very first set of labs showed I was boderline deficient in B12. Since learning about B12, anything under 500 is deficient. Mine was 250 and yet "they" continue to lower the...
  25. L

    Organic Acid Test

    Hello All, My doctor ask me if I were willing to do an OAT and I said I didn't know what it was but I had nothing to lose but a couple of hundred dollars. I got the results back and was told it was a mitochodrial ?? disorder The Energy production markers a-Ketoglutarate were high. Everything...
  26. L

    The difference between MS and ME

    Thank you all for your feedback. It is very helpful. Rich, I have had two MTHFR?? test and both have been normal or negative. Not sure what labs
  27. L

    The difference between MS and ME

    From what I have read, the symptoms of MS and ME are very similar. The triggers for both MS and ME can be the same also. Also, an MRI always doesn't show lesion of a person w/MS. I am very confused only because not any doctor has been able to give me a diagnosis. The fatigue was the last...
  28. L

    3 Things that Help the Most!!

    I have tried so many different methods but it was until I had horomone pellets that I noticed a dramatic change. My doctor also put me on a gluten free dairy free diet. So, the combo of diet and pellets, and a few supplements, I have improved about 20 percent. The diet change was for...
  29. L

    Hashimoto

    I had some out of the ordinary lab work done recently aside from the usual TSH and discovered my TPO thyroid antibody levels were very elevated. I am waiting to see the doctor but did so research myself and found that means I probably have hashimotos disease. Does anyone else here have this...
  30. L

    Naturopathy- any effect?

    Hello Z Don't be too envious of the US health care system. We might have access but..... I've seen 13 doctors and spent loads of money. My opinion of 99 percent of them.....They should chose another profession. To answer your question, I have found B12 to be helpful. There is a thread...