• 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

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    Anyone tried Melatonin?

    I tried straight melatonin years ago and woke up every 2 hours ! I've since discovered a great product called " Power To Sleep" by Irwin Naturals. Works great. Dr Montoya and Dr Chia approved and does not interfere with any meds. Amazon sells it.
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    Always thirsty and peeing loads

    Hi Alex....I also have ME and had similiar thirst issues for quite some time. No matter how much water I consumed I felt thirsty. I was checked for diabetes and fortunately that's not a cause. Could it be that you're consuming too much salt ?? I know that salt really seems to affect me. A...
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    Stanford: Are you a local patient?

    Hi Jaime- so if I'm interested how do I get signed up? I'm local to the Bay area and a patient of Stanford and Dr. Montoya's CFS Clinic. Thanks
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    Disappointing Visit to Dr. Montoya's PA

    I do also see Dr Chia but have not gone to OMI due to the prohibitive cost out of pocket.... I've been on disability for 8 years so paying hundreds of dollars and then praying that Medicare will reimburse , is just a little too stressful. And yes, Ive been on antivirals for 8 years....
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    Disappointing Visit to Dr. Montoya's PA

    Really sad to hear about your experience at Stanford..... Fortunately my last visit was much more reasonable. But since they've tried all their protocols with me- except Valcyte , which Dr. Chia pleaded with me NOT to take. Since I actually get to see Dr. Chia himself and not a PA, I listen to...
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    Disappointing Visit to Dr. Montoya's PA

    I tried two times to take LDN as directed by my PA at Stanford.... first time I took at night and maybe slept 2 or 3 hours total. It was horrible. I felt like a zombie. When I called my compounding pharmacy, they said to star far lower than the original 4.5 mg and start with .5 only.... Took me...
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    Disappointing Visit to Dr. Montoya's PA

    Hello Theodore- Dr Chia has tried multiple anti virals with me....HIV Meds. One was Epivir and the other AZT. I had a reaction to AZT and went off of that pretty quickly. Epivir did not do much. I saw him last May and he did not have any new ideas.
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    Disappointing Visit to Dr. Montoya's PA

    Hi Jim, Yes, I was taking Valacyclovir (Valtrex) for several years and a year or two back, was switched to Famcyclovir. I'm able to tolerate both. I'm also a patient of Dr. Chia and he strongly discouraged me from using Valcyte which is a much stronger anti-viral with more side effects. Bellasc
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    The Synergy Trial: Ritalin and Micronutrients

    I definitely felt more energy and a clearer head. The full K-Pax protocol did seem to make a difference for me. On the Ritalin alone I just felt more "wired" even though I take a full range of good supplements (not kpax). One thing to be aware of which no one told me until I ended up...
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    The Synergy Trial: Ritalin and Micronutrients

    Hello @cb2 - I don't know about Adderall. but yes, as a patient of Dr.Montoya's they are/were willing to prescribe Ritalin.
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    The Synergy Trial: Ritalin and Micronutrients

    I was also in the trial but they dropped me after I became extremely overheated from the Ritalin.. .It was clear that I had received the " real meds"... I continued Ritalin for a short time but didn't like how I felt on it. I just felt strangely wired but it did nothing for my energy level...
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    Disappointing Visit to Dr. Montoya's PA

    Hello @IreneF - I had hair loss from the Plaquinil and it can be one of the side affects....Mine is slowly coming back so there's hope. :-)
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    Disappointing Visit to Dr. Montoya's PA

    Hi @Groggy Doggy - Would you send me a private message? I tried to send you one and apparently I'm not very adept on this site. Wanted to chat a little further about Stanford and the fact that it sounds as though your PA did a good job when prescribing the Naltrexone. Thanks! @BellaSC
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    Disappointing Visit to Dr. Montoya's PA

    Thanks for your feedback @Sushi ...After I took the Naltrexone last week, I was so incredibly ill, I could have probably been in a hospital. It was awful. It took me calling the pharmacist who said to start with .5mg and very slowly work up from there. I'm pretty nervous to even take any of it...
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    Disappointing Visit to Dr. Montoya's PA

    Hi @roller ...Yes, I do have type O blood? Does that affect the medication? Stanford starts with a Naltrexone does of 4.5mg not 9. The 4.5mg was what I had the horrific reaction to. and it was really bad....
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    Disappointing Visit to Dr. Montoya's PA

    Hi @Billt ...The med that caused my hair loss was Plaquinil. It's an anti-inflammatory that is a Malaria drug. Also affected my psyche. I'm super sensitive. A friend told me that when I was on it, I had a "dark cloud" around me. I'm normally happy and upbeat so that was a significant change and...
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    Disappointing Visit to Dr. Montoya's PA

    Hi @JES .... Yes, I have blood type O. Why? That's interesting..... Naltrexone affects Endorphins and I was told by the Pharmacist, actually affects T-Cells.
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    Disappointing Visit to Dr. Montoya's PA

    Thanks @Gingergrrl ...I'm trying to understand what the benefit of this medication really is.
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    Disappointing Visit to Dr. Montoya's PA

    Thanks for the info @Inester7.... Kind of shocking to me that they started me at 4.5mg. Has Naltrexone made a difference for you and how you feel? I'm a high reactor to meds so I'm very hesitant and cautious about taking something that Ive had such extreme reactions to.
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    Disappointing Visit to Dr. Montoya's PA

    Thanks for your feedback @Gingergrrl .... I'm going to send an email to the PA at Montoya's office. I really believe that they need to understand the tremendous impact they can have on a patient and how much stress a negative interaction and visit like this can cause. I'm very reasonable and...
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    Disappointing Visit to Dr. Montoya's PA

    I started with 4.5 mg...it was lowered to .5mg
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    Disappointing Visit to Dr. Montoya's PA

    Wow! so sorry to hear about your experience with the surgeon @Misfit Toy . Dealing with Chronic Fatigue is difficult enough. Not having much support only isolates an already isolated life that many of us experience after becoming ill. BUT, having doctors, who "should" be providing expertise...
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    Disappointing Visit to Dr. Montoya's PA

    Thanks @Gingergrrl !!
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    Disappointing Visit to Dr. Montoya's PA

    I could possibly change doctors....I also see Dr. John Chia who is fantastic and will see him at the end of this month. The only other option locally to me is Dr. Kogelnick and Kaufman and they don't take insurance. As I'm on SSDI I have Medicare for insurance. The initial visit to Dr's Kaufman...
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    Disappointing Visit to Dr. Montoya's PA

    I was told by the pharmacist that Naltrexone actually affects the immune system and rebuilds T-Cells.
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    Disappointing Visit to Dr. Montoya's PA

    I was originally prescribed a dose of 4.5 mg....The dosage was changed to a super low dose of .5mg. I just haven't been able to get myself to take it after having such bad reactions to it both times I took the 4.5mg.
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    Disappointing Visit to Dr. Montoya's PA

    Thanks for your suggestion @roller. I did make some ginger tea..... and after speaking with the pharmacist, he recommended starting at the lowest possible dose of .5 mg. I haven't been able to get myself to take it again. Yet.
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    Disappointing Visit to Dr. Montoya's PA

    I feel as if I'm at a new crossroads after 8 years with CFS....I would love feedback/ support. Ive been a patient of Dr. Jose Montoya at Stanford for 8 years now. Last week I had a follow-up visit with one of his PA's -Physicians Assistant who specializes in CFS. Definitely not what I would...
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    Southern california doctors

    Hello Squirmy85, Dr. John Chia is in Southern California- Torrance to be exact. His specialty is Chronic Fatigue. Dr. Chia is brilliant and very supportive. Ive been a patient of his for several years. He's wonderful !!
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    Ceftriaxone Rocephin: Experiences and Advice

    I was on an IV of Rosephin and Flagyl for 4 weeks for a severe case of Osteomyelitis (2008) - a rare and very serious bone infection in my jaw. It was New Years Eve and I started itching like crazy (head, hands and feet)....I knew that I was having an allergic reaction. Why it took a month for...