• 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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  1. S

    Informal poll on Covid-19 vaccine responses

    Hello, I'm taking an informal poll on the experience of ME-CFS patients who have gotten any of the Covid-19 vaccines. Essentially, I'm interested in what vaccine you got and what your reaction was. I do not want to start a debate on whether one should or should not get a vaccine. I merely...
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    Is Diamox OK when you have Sjogren's Syndrome?

    Hmm.... It seems I stumped this forum without meaning to. I was hoping to be able to alert Dr. Driscoll to this posting by emailing her practice. But, it seems they only list a phone number to contact her at POTS Care. Will need to do that and/or also post to a Sjogren's site. :)
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    Is Diamox OK when you have Sjogren's Syndrome?

    I have a family member who has also been diagnosed with POTS and Sjogren's, and she has been experiencing dry eye for some time (and all the unpleasantness that comes with it). Since the more standard treatments for POTS and Sjogren's haven't worked, her neurologist recommended Diamox since he...
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    Does anyone have any suggestions for nasal congestion & runniness?

    Hi @ahmo - could you tell me more about what type of royal jelly you use, and in what form you use it? Is it a topical application or is it something you take orally? Thanks!
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    Does anyone have any suggestions for nasal congestion & runniness?

    Hi @Sushi - thanks for your reply. I had no idea there was such a thing as a nasal probiotic! I looked this up on Amazon and saw some positive reviews. When my daughter was doing NeilMed every day, she did get nosebleeds. But, if you do it only once per week, then I would assume the chance...
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    Does anyone have any suggestions for nasal congestion & runniness?

    Hi @BeADocToGoTo1 - you've certainly noted a lot of environmental and dietary factors to consider. Many things are negative, but she is positive for a few items. Notable positive ones include: -the use of plastic water bottles -we probably have several minerals in the bathing water, but we...
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    Does anyone have any suggestions for nasal congestion & runniness?

    @Hip, it's interesting that you mention the above. Although she has been quite symptomatic since 2011, it's only been in the last couple of years that I can recall that she's had this added symptom of nasal congestion. She has tried all sorts of probiotics, but they have not improved her CFS...
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    Does anyone have any suggestions for nasal congestion & runniness?

    Hi @Judee, thanks for the multiple tips. She's already on B6 and zinc. I didn't realize that those nutrients help break down histamine though; that's interesting. She hasn't heard of (or tried) Brigham tea, so that's something to try. I also appreciate your other suggestions about Nettle...
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    Does anyone have any suggestions for nasal congestion & runniness?

    My daughter has tried Nasacort (which is a similar product). Unfortunately, the Nasacort didn't help and she got nosebleeds from it. I myself once tried Flonase. I don't know if they changed the formulation, but when i tried it, it had this annoying floral smell and it stung the throat from...
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    Does anyone have any suggestions for nasal congestion & runniness?

    She's already cut out eggs since they upset her stomach. She's already cut out dairy too, with no positive results. She's off dairy, with the exception of occasional cheese. So, unfortunately, no positive results, but it was an excellent suggestion.
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    Does anyone have any suggestions for nasal congestion & runniness?

    I'm posting this question here because it could have been posted under several sections of this site, but then the responses might have been more limited My 20 something daughter has been diagnosed with CFS, but also POTS, Sjogren's Syndrome, and mast cell activation disorder. She is also...
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    Tracking CCI / AAI MRI & Treatment outcomes

    @debored13 I was planning to post my daughter's imaging report from Dr. Gilete anyway. So, here are the results: The tip of the odontoid peg lies below level of Chamberlain's line. No significative cerebellar tonsils ectopia. Craniocervical Junction Measurements: CXA Neutral 143 / Flexion...
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    Tracking CCI / AAI MRI & Treatment outcomes

    My daughter has had the necessary cervical imaging and we've sent that to Dr. Gilete. I'll post her anonymized report later on as we have recently received it. Because there are no reference ranges in the report, we've been trying to understand 1) how her imaging measurements compare to the...
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    Need some help with craniocervical imaging analysis!

    @Daffodil - Can you let me know what Facebook group you are referring to? I know there is one that was discussed in the main thread on CCI, but I'm not sure if there is another one. @Bowser - I got the same reply from Dr. G's office, and so I called a local CT scanning facility and read them...
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    Need some help with craniocervical imaging analysis!

    @toyfoof - thanks for your input. It's funny you say what the rotational views are for. My daughter definitely rotated her head to the left and to the right, in addition to backwards and forwards. So, she had the views. It sounds like that Dr. G wanted the images sliced a certain way in...
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    Need some help with craniocervical imaging analysis!

    Hello, This post relates to those who've gotten upright MRI's of the brain and craniocervical spine, as a precursor to have the images be read by neurosurgeons such as Dr. Gilete, Bolognese, etc. My daughter got the above images, and the script was specific in that it asked for an MRI of the...
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    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Hi @jeff_w I see on page 93 of this thread that you posted a unifying hypothesis on how the mechanical and metabolic bases of CFS can both be correct. I'll definitely have to digest that; I appreciate you posting it. My question to this thread concerns CCI and autoimmune illnesses. I have...
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    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Hi @Gingergrrl. I'm reading through this thread (and only up to page 32), but I saw something you said. Anyway, in case you haven't seen it, there's an organization called Dysautonomia International which has a page of their website that lists POTS doctors. And, if there's not one near you...
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    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Hi All, I'm new to this thread, but just started reading it recently. I'm the parent of a 20-something who has been diagnosed with ME/CFS, POTS, and MCAD. Although she doesn't have EDS, she is on the hypermobile spectrum. Practically all prior treatments to date have not helped her. Due to...
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    Suggestions wanted now that PheniTropic (for sleep) is off the market

    Thank you @Shoshana
  21. S

    Suggestions wanted now that PheniTropic (for sleep) is off the market

    Hi @Shoshana Thanks for the link to the other thread. I did read that with other meds, there is the risk of them not being effective after a while or withdrawal. So, i guess that one has to choose/try wisely. I like your suggestion of moving this to another forum, but here's a stupid...
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    Suggestions wanted now that PheniTropic (for sleep) is off the market

    Hello, My daughter finds some minor benefit in falling asleep (and staying asleep) with a phenylated GABA product call PheniTropic. I believe that its effect is due to its ability to cross the blood/brain barrier. Unfortunately, the FDA is declared that this product needs to be taken off the...
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    Question about a positive Cunningham Panel

    Hi I had a question regarding the Cunningham Panel. It is: what might several elevated biomarkers of the Cunningham Panel point to in the absence of suspected PANDAS, PANS, or other neuropsychiatric disorders? I understand that this might still be in the process of being researched, though...
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    How to take midodrine for POTS and still take a daily nap?

    My 23-year old daughter was diagnosed with neuropathic POTS. She tried Florinef, at 1/4 of the smallest dose, and she took it in the mornings, but she had terrible insomnia from it. It also took about 2 weeks for those side effects to fully go away. Her doctor recently prescribed midodrine...
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    Is it active mycoplasma or a false positive?

    @Thinktank The specific mycoplasma she was positive for was mycoplasma pneumonia, both IgM and IgG. On one hand, my daughter does not have specific symptoms of "walking pneumonia". On the other hand, I've read that infections such as these can be related to all the fatigue, brain fog, GI...
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    Florinef Questions

    @Inester7 She does take the Florinef in the morning, as directed, so that should not be an issue. She did and does have sleep disturbances, but she had not had them to this extent. For example, 2 nites ago, she went to bed at 11 pm or so, but woke up at 1 am and was awake until 6 am. Her sleep...
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    Florinef Questions

    I realize this is an old post, but my daughter just started taking Florinef for documented neuropathic POTS. She did just start on 1/4 of the 0.1 mg dose, but after about 3 nites, she developed insomnia. She's had it for 3 nites in a row, so I'm not sure how much one can cut down on the pill...
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    Is it active mycoplasma or a false positive?

    My daughter has recently tested positive for mycoplasma IgM antibodies. In fact, over the past 4 years, she has either been equivocal or weakly positive for this infection. Since I know that false positives can occur, at least according to the Mayo Clinic site, I am wondering if there is some...
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    Do I or Don't I Have Babesia Microti Infection

    Through an IGeneX test, my daughter tested positive for B. microti IgM with a value of 40 (with negative being anything less than 20). Per the IGeneX report, this indicates active infection. Her B. microti IgG was < 40 (with negative being anything less than 40). So, one of her docs...
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    Can You Please Explain My Results

    @vergarm I just saw this post (that was started over a year ago). My daughter was just diagnosed with a Lyme coinfection (B. microti) and the doc who diagnosed her suggested that we could see Dr. Heidi Wittels, if we didn't have anyone else lined up. Since it sounds like you've been a...