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

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  1. P

    Has Anyone Seen Dr. Kogelnik?

    My daughter has not seen Dr. K recently. Like you, it's been a few years. Sorry I can't answer your question about what's new with his trials. We have gone down another path (fighting the Lyme) so we are seeing other doctors.
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    Lyme on my mind

    Astrid13: Thanks so much for posting your story. My daughter has been so ill for the last 2 1/2 years. Finally tested positive for Lyme (IGM positive - IGG negative). CD57 of 4!! She has just started antibiotics and I know it is going to be a long road ahead but at least I feel we are on...
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    Has Anyone Seen Dr. Kogelnik?

    The positive Lyme result came from Igenex lab in Palo Alto, California.
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    Has Anyone Seen Dr. Kogelnik?

    maryb: Dr. K didn't suggest the third Lyme test. We were just desperate to find an answer. I know there is a lot of controversy over Lyme and specific labs but we figured at least it was a clue. We are encouraged because her symptoms are flaring so much with each dose - the drug is fighting...
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    Has Anyone Seen Dr. Kogelnik?

    The anti-virals had not decreased any of my daughter's symptoms so we decided to have her checked for Lyme again (she had been tested twice before, both results were negative). This time we took her to a different lab that is supposed to specialize in Lyme. This time she came back positive...
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    Has Anyone Seen Dr. Kogelnik?

    GREAT DOCTOR!!! Although my daughter has not improved yet, he is the only doctor (out of approx. 40 doctors that she has seen) that had any clue what was wrong. He is working hard to figure out what treatment is going to help her. He explains everything thoroughly and explains all the risks...
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    Can florinef cause emotional swings? depression, anxiety.. im in hell at times

    Yes, she did have to wean off but since she had been on Florinef for a short period of time it did not take long (I can't remember the exact amount of time - she followed the doctor's instructions on weaning off of it). The depression did go away relatively soon. The doctor advised her to not...
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    Can florinef cause emotional swings? depression, anxiety.. im in hell at times

    YES! Florinef caused such severe depression for my daughter that she had to stop taking it.
  9. P

    Famvir...here I go.

    So glad to hear that your daughter is noticing a difference!
  10. P

    Low blood glucose?

    Anyone else have blood test that shows very low glucose level? A month ago my daughter's test came back at 54 which the doctor said was low. She was just tested again and her result came back as 25 (which is extremely low!) (and yes, they tested it again to make sure that it is correct). I...
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    Anyone get "brain freeze" headaches?

    Valentijn: Interesting! I'll ask her doc about it when we see him next week. Pam
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    Anyone get "brain freeze" headaches?

    Just curious whether anyone else gets severe headaches that feel like a persistent "brain freeze". My daughter said it feels like her brain is swelling in her head. Anyone know what causes this? She has had headaches in the past but not like this one. She has been on an anti-viral drug for 2...
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    Has Anyone Seen Dr. Kogelnik?

    Wouldn't it depend on what caused the CFS/ME to determine if it could be "cured" or not? For example, my daughter's illness happened right after a viral illness. The doctors are telling us that they believe, with the right kind of treatments, she will get better in about a year. I know many...
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    Has Anyone Seen Dr. Kogelnik?

    IreneF: Thanks for your reply. We really are happy with Dr. K. Although my daughter has only been seeing him for a few months, he has understood her illness more than any other doctor she has seen (and believe me, she has seen many doctors!!!) I know there is no magic, quick cure. He told...
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    Has Anyone Seen Dr. Kogelnik?

    RUKiddingME: Thanks for the info. We have been vvery happy with Dr. Kogelnik (I know you can find different opinions on any doctor). My daughter also has been on an anti-viral for only 2 months so again, it is too soon to tell if it will work. I also am confident that my daughter is...
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    Has Anyone Seen Dr. Kogelnik?

    I was wondering if anyone on this forum is seeing Dr. Kogelnik in California and, if so, have they had success with his treatment(s)? My daughter has been seeing him for a few months now and he has started her on an anti-viral. He seems very knowledgeable but I am wondering what other peoples...
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    Anyone had improvement while taking Famvir?

    Heaps: Glad to hear you saw improvement! Are you able to work and have a relatively "normal" life? I see you are an advanced member on this forum and from reading your posts you seem to know a lot about this illness. It is really a lot of doom and gloom like some people have told me? The...
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    Anyone had improvement while taking Famvir?

    I am new to this forum. My 24 year old daughter was diagnosed recently with CFS/ME with the symptoms starting after a viral illness in July of 2011. She has been taking Famvir for 2 months now. So far, no improvement (although the doctor told us it would take at least 3 to 6 months to see...
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    my famvir trial

    Clive: I am new to this forum and I have been very interested in reading your weekly updates. I have a 24 year old daugther that was diagnosed in November 2012 (symptoms started in July 2011 after a viral illness and she was diagnosed with POTS in November 2011). She is seeing Dr. Kogelnik...