• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. M

    Got lab results - help me with interpretation please

    I took some standard and university labs in my region. No, there wasn't really any evidence for viral infections. In the meantime I found out, that my problems are most likely caused by CCI/AAI.
  2. M

    Advice on Ciprofloxacin

    Don't take it. In treatment for SIBO usually Rifaximin is used, but it's expensive.
  3. M

    Heart Rate Variability Conundrum

    @Jyoti I didn't read the whole thread. Just wanted to ask if you can export the raw data of your beat to beat intervals as a text file. Most applications should have this function. These are usually numbers between 500 and 1500 ms (milliseconds), depending on your heart rate. I would like to...
  4. M

    Possible UTI and nitrofurantoin safety, troubleshooting

    Males don't have UTI's, they have prostatitis (I assume that you are male). This has to be treated different (at least 4 weeks of abx in chronic stage) and with special antibiotics. Did you have an antibiogram, so that you know which bug causes the problem and which antibiotic could...
  5. M

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

    Based on which images did he diagnose you and how where your measurements? In my case it seems I have only relatively mild CCI/AAI, at least based on imaging. Gilete also told me that 95 % of his surgeries are female patients.
  6. M

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

    He told me exactly the same. Seems that he's getting more cautious in recommending fusion surgery.
  7. M

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

    What did he recommend you? Muldowney protocol?
  8. M

    Poll: Antibiotics before ME/CFS?

    Most people take antibiotics every year, so I doubt you will come up with useful results here. IMO it would make more sense to ask for the specific antibiotic classes like penicillines, tetracyclines, fluorochinolones etc. I would suspect a higher complication rate with flurochinolones compared...
  9. M

    Tracking CCI / AAI MRI & Treatment outcomes

    Maybe it makes a difference by whom you got operated? I think they use different procedures, too? Is there anyone who got substantial improvement after surgery by Gilete? Maybe there's not so much a problem with surgery, but more with the person who does the procedure? Only questioning, have no...
  10. M

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

    Why do you care what people on FB say? These are lay people. I highly doubt there is anyone who really can interpret mri scans properly. What did your radiologist say? I would send these scans to a specialist, I think there are several in the US and some will do telemedicine.
  11. M

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

    https://docs.google.com/document/d/e/2PACX-1vTcvWpO9KlIKntQF9AAto-RYnVRTsysJ7WSmQj81vJ7nbtcYjxrNqR9gpGbOPVq7o_P0Y73gCEOmnBQ/pub?fbclid=IwAR14zAUKYAd94psVKwvK33Uj4Ay-AfOfRYvFAtQFb0uP1HxwMyC1P6QCOGA...
  12. M

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

    Do you know how long the waiting list is? Where can I find the "pre-group" resources? Can't find them yet. Thanks. Edit: I found it by myself.
  13. M

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

    Which group is this?
  14. M

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

    Thanks Mattie. They use all the same scanner but in Munich they didn't let me do my maximal rotation, side bending, although I told them that I could do much more. Afterwards my doctor told me I have to get new images because it's quite useless if you rotate 45° in mri but are able to rotate 90°...
  15. M

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

    Is here anyone who got his upright mri results from a german upright clinic reviewed by Dr Gilete? I'm unsure about the quality of the clinics and it would help me if I knew were to go for getting scans that will satisfy Gilete.
  16. M

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

    Question to those of you who had an MRI Review by Dr Gilete: I have an Upright MRI in neutral position, side bending and rotation but not flexion/extension. Is this fine for Dr. G. or does he need flexion/ext. as well? Is there consensus about Dr G. in the meantime? In the past I had a bit the...
  17. M

    Potential Lyme, what are ABX risks?

    I would say yes. But you need to take the right medication (I would take doxycycline or minocycline) in the right dosage.
  18. M

    O2 meter off?

    For heart rate certainly not.
  19. M

    Possible UTI and nitrofurantoin safety, troubleshooting

    An urologist should know what to do. To prove or exclude an infection I already told you what to do. These test stripes (named combur 5 in my country) are an easy way to check if there is an infection. I think every pharmacy should have this and if not, certainly every GP has it. If positive I...
  20. M

    Possible UTI and nitrofurantoin safety, troubleshooting

    You should see a urologist.
  21. M

    Possible UTI and nitrofurantoin safety, troubleshooting

    In Germany you can buy test stripes like these in the pharmacy: https://www.roche.de/diagnostics/tests-parameter/point-of-care-diagnostik/combur-5-test-hc.html#Merkmale If it is possible I would send a family member to buy this for you and then test yourself. This would answer at least if you...
  22. M

    Possible UTI and nitrofurantoin safety, troubleshooting

    Are you male or female? Did you have urine culture or at least a quick test ? What did it show (leukocytes, nitrite, erythrocytes)? I wouldn't expect extrem damage like it is possible in fluorochinolones, but as far as I remember Nitro isn't a good antibiotic. I did some research years ago but...
  23. M

    T Cells

    Low normal absolute lympho count and low normal CD3-T-cell relative count can give low CD3 absolute count. Do you know the percentage of lympho, monozytes and neutrophiles in relation to your total white blood count?
  24. M

    T Cells

    This looks normal for me (you have to take percentage values). How high are your total white blood cells? And your total lymphocytes?
  25. M

    Testing for a coxsakie and enterovirus

    I went after this question years ago because I knew it must be false what doctors told me about IgM/IgG. I even consulted a book which is considered "the bible of immunology" (I've forgotten the precise title) but that didn't answer my question, too. So in short: I did not find a reputable...
  26. M

    Testing for a coxsakie and enterovirus

    I looked on the ARUP website and they say both for Coxsackie and ECHO: - Reference Interval less than 1:10 - Single positive antibody titers of greater than or equal to 1:80 may indicate past or current infection Dr Chia says 1:160 to 1:320 in ARUP lab test indicates active infection.
  27. M

    Testing for a coxsakie and enterovirus

    This is what most doctors tell you but it's not entirely correct. You can have a virus reactivation without positive IgM and just IgG rising. For example this is the case in most Varicella zoster reactivations. So that means that you can well have a chronic active infection with negative IgM.
  28. M

    Testing for a coxsakie and enterovirus

    I'm not sure if it makes sense to compare test results between different labs, at least if we don't know the cutoff value for positive/negative. For example I had a bartonella IFT also at Frankfurt university lab where the lab says: < 1:80 is negative, 1:160 is borderline and from 1:320 on it's...
  29. M

    Testing for a coxsakie and enterovirus

    My results came back, I have attached them. I'll have to do some research what they tell me because the lab says: "Antibody tests are negative or unsuspicious positive."
  30. M

    Ebv test results interpretation

    Maybe saliva testing is more sensitive. How high are your antibody titers?