• 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.

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Search results

  1. T

    New doc at Stanford

    My insurance is a 80/20 plan so I need to cover 20% of whatever the cost is. For the other bloodwork it came to $2000 for ten vials of blood.
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    New doc at Stanford

    He only said that it was "an anti-inflammatory that would be helpful."
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    New doc at Stanford

    wow! lots of info thank you!!!
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    New doc at Stanford

    Thank you! I was actually at the clinic and saw Dr. B the day of this lecture but couldn't stay that late to attend. I haven't yet watched the Horowitz video, but I am familiar with him from Lyme circles. Thank you for including them in your reply. It makes it so much easier for me to return...
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    New doc at Stanford

    I was prescribed ARAVA by Dr. B, but I wont take it due to liver toxicity.
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    New doc at Stanford

    I'm sorry you had a similar experience to me and I would be upset too. I can TOTALLY see him telling you that story. Very inappropriate. Katie is no longer there. Can you post links to the FB groups? Dr. B also wanted me to take Arava but I freaked out in the waiting room when I read about...
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    New doc at Stanford

    Yes, I noticed right away that I could not search LDN. Bummer.
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    LDN and sleep

    Thank you, How did you know that 2.5 was your sweet spot? I titrated up pretty quickly with 1.5 mg compounded pills. adding 1.5 every 2 weeks. I'm sleeping so much better than ever but I could sleep for 24 hours now, it seems. I have a moderate/mild case of ME and am able to be out of bed...
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    LDN and sleep

    I've been taking 4.5 LDN for about a month now. I take it in the morning. I'm supposed to move it to the evening at some point, not sure when. I've noticed that it does help me sleep most nights for 10 hours! But I am not waking rested at all. In fact I'd say my fatigue is worse. I am...
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    Naltrexone-caused Insomnia

    I was advised to take my LDN in the morning. When are you taking yours?
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    LDN & Brain Fog

    I am now on 4.5 LDN for about a month. Started at 1.5. I am sleeping 10 or more hours at night, and having intensely vivid dreams. But I am waking up even less rested than when I was getting 4-6 hours of sleep. My fatigue is increased and my brain fog as well. My pain seems to be decreased...
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    New doc at Stanford

    I am not at all happy with Dr. Bonilla. He dismissed all of my concerns and just ran his own "tapes" about how to treat ME/CFS without taking anything I was saying into consideration. He said "we do NOT treat Lyme disease here. You have CFS, not lyme." That is not true, I've had lyme and...
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    Low Dose Naltrexone and BP?

    I am still trying to sort out why my BP skyrocketed after my uterine fibroid embolism in mid December. So far the culprits are starting LDN mid January or having been on 2 g valtrex since November. Are you on valtrex?
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    Anyone get high blood pressure on Valtrex?

    I’ve been on 2 g of valtrex since November and my bp has risen to 168/98 most of the time. I now take amlodipine and it helps the hypertension. I never thought of valtrex being the culprit. Have you found any medical research backing this? Thank you.