• 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.

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

Search results

  1. Marianarchy

    ABX for Mycoplasma Pneumoniae and Chlamydia

    I was treated for C. Pneumoniae a few years back with multiple abx. I couldn't tolerate standard Doxy (Doxycycline Hyclate) or minocycline. Ask the doctor for Doxycycline Monohydrate. It is much easier on the gut.
  2. Marianarchy

    Famvir and White Blood Cells

    My WBC count is always low. I have taken Famvir for over a year and it hasn't made the WBC count any worse.
  3. Marianarchy

    Low Dose Naltrexone Bad Reaction. WTH?

    I also had a bad reaction when I first tried LDN. I filled my original RX at a local pharmacy. They never could figure out exactly what the reaction was from. I now take LDN only from Irmat filled with acidophilus and I haven't had any issues with this formulation.
  4. Marianarchy

    I am booked in to see Prof. de Meirleir in January

    @snowathlete, at this visit you say you were tested for: liver enzymes, inflammation, NK-cells and cytokines. And I'm having the Infectolabs LTT test for Borrelia too. Do you mind sharing the cost of this round of testing? Thanks!
  5. Marianarchy

    Have here anyone seen KDM at WPI? Can you tell me about your experience?

    I have an appointment scheduled the last week of January. But no, @alexk201, I haven't found out any of the info regarding the cost of the lab testing or availability of Gc-MAF as of yet. The only info I received from KDM's office regarding testing stated that I would need to provide a credit...
  6. Marianarchy

    Have here anyone seen KDM at WPI? Can you tell me about your experience?

    I have an upcoming appointment to see KDM at The Whittemore Peterson Institute in Reno, Nevada. Has anyone here seen him at this location? I'm interested in finding out about the cost of the lab testing. Did he use a lab in the US or ship the blood overseas? Also, will WPI or KDM make Gc-MAF...
  7. Marianarchy

    Frustrated with lack of progress with Famvir

    I haven't seen significant improvement with the Famvir/Valcyte combo :-(.
  8. Marianarchy

    Valcyte help please !!!

    If you are not getting better with antibiotics, it might be a good idea to test for fungal infections that can cause bronchitis and pneumonia of the lungs (ex. Aspergillus Fumigatus, Valley Fever). My father had a cough and chest congestion for months on end. His PCP kept giving him antibiotics...
  9. Marianarchy

    Valcyte 13+ weeks, feeling discouraged

    Be sure to eat an egg or avocado or some other "fatty" food with the Valcyte. My doc said it doesn't make any difference what time of day you take the single daily dose of Valcyte. It makes sense to take it in the evening so you can sleep through the unpleasant side effects.
  10. Marianarchy

    Valcyte 13+ weeks, feeling discouraged

    Are you taking the Valcyte with a fatty meal to help with absorption? I wasn't told to do this, but read it in the manufacturer's data. You want to make sure you are getting the full benefit of the drug. I really think that getting more rest would help you. If there is anyway you can do it, I...
  11. Marianarchy

    Comment by 'Marianarchy' in 'Valcyte 2013- Week 21'

    I am so happy for you! I am also seeing some improvement. I have been diligently taking SOC's advice to take it easy and not push myself. It's hard some times. Thank you for keeping us updated. I'm crossing my fingers we will be back to our old life soon!
  12. Marianarchy

    Hizentra for 2 months

    I first learned about the use of IVIG or sub Q IG (what Hizentra is) on this patient blog: http://www.cortjohnson.org/a-chronic-fatigue-syndrome-patient-visits-dr-peterson-the-corinne-chronicles/. This patient did well on the treatment. I understand Dr. Peterson and Dr. Susan Levine use this...
  13. Marianarchy

    The genetic age could be the golden age of medicine

    Not at all bored by this topic. It's fascinating. Thank you for posting!
  14. Marianarchy

    Overseas patient seeks information on accommodation near Dr John Chia's clinic

    When I traveled to Cleveland for medical treatment last year, I booked a room through Airbnb.com. I chose to stay with a couple in their home near the Cleveland Clinic. One of them worked at the facility and generously gave me a ride to and from the clinic each day. They were wonderful! There...
  15. Marianarchy

    Hypersensitivity to full moons

    @JC87 I read that symptoms of Lyme are worse during the full moon. Have you been tested for Lyme Disease?
  16. Marianarchy

    Physicians/Clinics providing IV saline on site

    Your doctor can write an RX to get the IV placed and you can get the fluids at home. I don't have insurance. My doc wrote a standing order for me to get an IV cath inserted. Walgreens Home Infusion does this for $40.00.
  17. Marianarchy

    I need assistance with a Methylation plan

    Thanks Red04. You explanation was very helpful. I was confused about the difference between Rich and Fredd's protocols. I have also been reading the heartfixer and Yasko websites. This is probably where I am really confused. They talk about fixing CBS and COMT problems, sulphates and sulphites...
  18. Marianarchy

    I need assistance with a Methylation plan

    I wish my brain fog wasn't so bad, I might be able to read and understand enough about my 23andme results and the basic Methylation protocol to start a plan on my own. Since my brain isn't working properly, I'm crying uncle and asking for help. I have had ME/CFS for 5+ years. Major...
  19. Marianarchy

    Taking midodrine, feeling awful - what should I do?

    My Autonomic Specialist prescribes midodrine in very low doses along with a beta blocker. He says the beta blocker counteracts the midodrine side effects. That said, I haven't been brave enough to try this treatment strategy after a disastrous trial of midodrine alone that was prescribed by my...
  20. Marianarchy

    GcMAF + LDN? GcMAF + Antivirals?

    I have been considering treatment with GcMAF and while researching last night (on GcMAF.eu) I read "LDN may block the effect of GcMAF". Has anyone heard this from another source? I had heard that LDN helps with inflammation and can make it easier to tolerate GcMAF. I am currently taking...
  21. Marianarchy

    Please tell me your famvir/famciclovir story

    I took 2500 mg of Famvir daily for 7 months and my viral titers didn't go down at all.
  22. Marianarchy

    Comment by 'Marianarchy' in 'Valcyte -2013 Week 12'

    I was wondering how you were doing. Thanks for the update. I'll be crossing my fingers that this bad phase subsides so you can enjoy your vacation. :-)
  23. Marianarchy

    Dr Montoya and Valcyte

    I agree with SOC. When I couldn't get in to see Montoya, I called Dr. Kogelnik's office. He worked with Montoya at Stanford on the Valcyte study. His clinic, Open Medicine Institute is located in Mountain View. It only took me a few weeks to get an appointment. He does use progressive treatments...
  24. Marianarchy

    Please Tell Me Your Valtrex + Valcyte Story

    You can ask the Pharmacy Manager at CVS to order the Valtrex from a specific manufacturer. I have done this in the past.
  25. Marianarchy

    Which doctors are prescribing Nexavir?

    Can anyone tell me which doctors are currently prescribing Nexavir? Thanks!
  26. Marianarchy

    having a lot of relief from my cfs symptoms

    Have you tried Low Dose Naltrexone? It helps with pain from fibro, boosts the immune system and many people feel it helps their mood too.
  27. Marianarchy

    Third day on Valcyte. So far so good.

    The Valcyte patent is set to expire in 2015. This article talks about a generic version being available in 2013 before the patent expires. I'm confused...
  28. Marianarchy

    Third day on Valcyte. So far so good.

    The bad news about Valcyte going generic is that Genetech won't offer Patient Assistance for Valcyte any longer. Famciclovir, the generic form of Famvir is still VERY expensive for those of us who are uninsured.
  29. Marianarchy

    Pernicious Anemia, neurological/brain damage, B12 injections. I need information.

    I had significant neurological symptoms and nerve pain before being diagnosed with Pernicious Anemia. My serum B12 level was never clinically low, but my body was not absorbing the high doses of subligual methylcobalamin I was taking. My Neurologist told me studies have shown that serum levels...
  30. Marianarchy

    Third day on Valcyte. So far so good.

    My Valcyte experience has been very similar so far. I had 7 months of Famvir before added in the Valcyte. I am taking 900 mg Valcyte twice daily for 3 weeks. I have flu-like symptoms; severe fatigue, weakness, the feeling of being chilled and I can't get warm, headache, dizziness, a little...