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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. AnkeC

    Anyone had a muscle biopsy before?

    I had an open muscle biopsy on my thigh, ordered by my rheumatologist. Had pepared myself for a painful recovery but was pleasantly surprised by a completely painless recovery. Which made a nice chance to how I feel on a daily basis. Like you Pain is a major problem for me. Happy to share the...
  2. AnkeC

    CCI / AAI / chiari / instability /neck evaluation by Dr Gilete

    I think you will find that Dr G refuses to review anyone in whose scans he can’t see a problem. In my case I sent in my scans, and then got a response that Dr G was interested in reviewing my case. After that I paid for the report and filled out paperwork. But I definitely got vetted first...
  3. AnkeC

    Tracking CCI / AAI MRI & Treatment outcomes

    Out of those 20 symptoms I had only had IBS before ME. I’ve had lifelong issues with stamina/energy but it wasn’t until 2012 that I got really ill. There was no particular illness or infection that set it off
  4. AnkeC

    Tracking CCI / AAI MRI & Treatment outcomes

    Yes, I think it’s what @Joly said .... probably Dr G’s 1st language not being English. I take it as .... I didn’t get an upright MRI like I usually do, so I am working with what I am given. I chose not to get an upright scan because it would have meant flying interstate. Since I got the mri...
  5. AnkeC

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    When I went for my 3T supine MRI my Dr asked for flex, extension & rotation. The tech told me that there is no room for movement as your head is in a cage. So my Dr ordered a duplicate in a CT scanner as well. And I sent both scans to Dr G and Dr B. I think Dr G primarily used the CT to...
  6. AnkeC

    Tracking CCI / AAI MRI & Treatment outcomes

    I have a report from Dr Gilete, and am waiting on one of Dr Bolognese's famous two liners. Since I would not choose the US for surgery (if I were to choose surgery) I don't think I will invest too much in consultations with Dr B. But I will have to wait and see what he says first. In my report...
  7. AnkeC

    Tracking CCI / AAI MRI & Treatment outcomes

    Hi User891, I just got diagnosed by Dr G as well, yesterday in fact. Am feeling overwhelmed because I expected to be rejected. Now I am not sure what to do next. Welcome to this bunch of zebras we find ourselves in. Hope your diagnosis will lead you to good stuff.
  8. AnkeC

    Tracking CCI / AAI MRI & Treatment outcomes

    I checked with his assistant Amy, asking a similar question, and it seems that Dr G will only review cases he suspects have issues. If he doesnts ee anything in your upload or description, he will not ask you to go ahead with the online consult.
  9. AnkeC

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    hmm. So it would appear I have been diagnosed with CCI..... and then some. Just got my report from Dr G in Spain. I had kinda hoped that I had tethered cord, and that that was all. Yes I have arthritis in my neck, but most people my age probably would have the same finidings should they get...
  10. AnkeC

    Have you noticed symptoms of Connective Tissue degradation since onset of disease?

    oh bugger! I so wish I hadn't read this now. How have I missed my horrid fingertips? How long has this been going on? I noticed that the back of my hands started looking like the hands of an old woman some time back, but figured it was lack of moisturising on my part. Got no explanation for...
  11. AnkeC

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Interesting. I had 3T MRI scans done a couple of weeks ago, and my report also started at C2-C3 (and higher). My Dr had specifically queried cci, and Chiari on the referral. Which is probably why a "minimal Chiari I Malformation" was even mentioned. However, in the report there was a...
  12. AnkeC

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    It certainly sounds like you have had just about every possible scan to investigate the area (potentially) involved. But you're right... he might have seen something had he been able to look at the DMX...then again, maybe not. It's pretty full on, and terribly confusing. I didnt have access to...
  13. AnkeC

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Thanks Remi.... I hate that money has to be such a consideration where health is concerned. :(
  14. AnkeC

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Thanks for that B, Do you know how much Dr Bolognese charges for his initial evaluation? (I've sent him my scans and forms as well.)
  15. AnkeC

    Tracking CCI / AAI MRI & Treatment outcomes

    There appears to be quite a wait to join Beyond the Measurement. People have been waiting weeks for responses to their request to join.
  16. AnkeC

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    I have a question for those people who have communicated with Dr Gilete's clinic. I sent him my scans and just received a reply that he is interested in reviewing my case followed for different review/report options and their relevant prices. My question is.... is this a standard reply he sends...
  17. AnkeC

    My ME is in remission

    I'd also like to know more about the US costs. I saw a few figures for Dr Gilete in Spain, but Dr Bolognese's clinic I have no idea of cost for. Usually American fees are crazy high, so I expect them to be much more than the overall Spanish cost. I've sent off my scans to both Drs today...
  18. AnkeC

    Anyone else have a massive improvement from Tyrosine?

    I found tyrosine to be uplifting and energising.... for two days.... then I dropped into the deepest pit of despair. It was very weird. Doing stuff because I have the energy, motivation and clarity of thought.....then suddenly bursting into tears, absolutely inconsolable.... while continuing...
  19. AnkeC

    NAD, Niacinamide and methylation

    Citrate? uhm. No. I only have Lactate and pyruvate. Assuming I did the maths right, and there is a good chance I didn’t, I thought L : P is 10 But having just checked my unit conversion, I think it’s more like 100, which would be normal. (Isn’t it odd to express a ratio with a single number?)...
  20. AnkeC

    NAD, Niacinamide and methylation

    It’s not the lactate that’s high, it’s the pyruvate. I already do activated b’s, monthly magnesium injections, etc
  21. AnkeC

    NAD, Niacinamide and methylation

    Since my lactate/pyruvate ratio is out of whack I thought I would give Niagen a go. Oh boy. Today is only day 1.......and I took 100mg on an empty stomach, instead of the recommended 250mg. And I have been sick as a dog all day. No idea if it's a clue, but I got the same heady nausea...
  22. AnkeC

    Drugs linked to mitochondrial toxicity (eg: tetracycline, minocycline, metformin)

    "Antibiotics that are supposed to target pathogens will also bind to mitochondria with high affinity and cause side effects [17]. An example of this is seen with minocycline. It inhibits ATP synthesis and calcium retention in the mitochondria of brain cells [18]. The commonality of these...
  23. AnkeC

    Testosterone - increasing the signals to make it, not the hormone itself...?

    This might be slightly different since I am female......and really don't want hair on my chest. But..... My testosterone is virtually undetectable. Even though women do not need as much as males, it is still pretty important to us. My dr tried dhea hoping that it would convert into T but it...
  24. AnkeC

    My Dr calls me a diagnostic dilemma

    Thank you Idie, I really wanted to start on the protocol, but there was so much I didnt/dont understand. And because my body reacts so stupidly to so many things I wanted to find a professional to help me. Of course the "professionals" have their own way of doing things which was then nothing...
  25. AnkeC

    My Dr calls me a diagnostic dilemma

    Hi Martial, I havent do the full blown Lyme testing, we did however check (I just know I am about to get this wrong) my CD57 levels, which apparently are an indication that more testing is a good idea. Anyway, they were the opposite of what i needed to be suspicious of lyme. With the B12, I...
  26. AnkeC

    My Dr calls me a diagnostic dilemma

    Hi SOC, thanks for taking the time to comment. I didnt go into a lot of detail in my post, I guess I'd still be writing and didnt want people to lose interest. My new specialist is talking about IvIg treatments, but first he wanted to investigate some sleep/respiratory issues he was...
  27. AnkeC

    My Dr calls me a diagnostic dilemma

    Hi SickOfSickness, no I havent tried any others. Not even sure why I tried these in the first place, I think my husband must have brought some home, and it just happened to be there.
  28. AnkeC

    My Dr calls me a diagnostic dilemma

    I love my GP, I really do. She is the first to admit she hasnt got a clue as to what's wrong with me, but she'll be damned if she'll stop looking. :) She keeps sending me to different specialists in the hope that one of them will have that EUREKA moment that has been missing for a fair few...