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

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  1. MartinK

    Myositis blot - anyone done this? Results?

    @Zebra Now I am trying to find a suitable doctor to help me with this. It is not easy. Anyway, thank you very much for the help with the interpretation! I had 2x EMG in past, but results was good.
  2. MartinK

    Myositis blot - anyone done this? Results?

    hey @lenora I'm surprised more people haven't done this! It seems like an important test to me... Polymyositis can apparently also cause breathing and swallowing problems, but luckily I don't have these problems. My problems are related to muscle problems. I can't strain them, I can't heat them...
  3. MartinK

    Myositis blot - anyone done this? Results?

    Hi all, Im wondering if any of you with muscle fatigue have been tested for myositis. I did Myositis Blot and I have positive antibody SCL100. Did your doctor help you interpret this? What are your results? Do you know anything more about this antibody? If i understand correctly it can...
  4. MartinK

    Colchicine is one key for our recovery. Aussy study 2022 Long covid

    What are the best and safe alternatives to Piroxicam? Can anyone advise? Thanks
  5. MartinK

    I want to create a group of similar patients and share experiences / treatment options

    Thank you, yes, I want to get this thread back to track. Okay... So, I mentioned the main symptoms in the introduction. now I'd like to move on to the next thing I'd like to compare: - my me/cfs started suddenly overnight with flu-like symptoms (I also want to find people with a similar onset)...
  6. MartinK

    I want to create a group of similar patients and share experiences / treatment options

    @wabi-sabi Im not sure, I think the problem is that few of us have an official diagnosis of dysautonomia, but surely some of us has it. Do you match these symptoms?
  7. MartinK

    I want to create a group of similar patients and share experiences / treatment options

    Hi guys, I would like to find out / find as many people as possible similar to me with these specific symptoms: -severe ME/CFS with physical fatigue mainly -extreme intolerance to heat -easy to get PEM after muscle stimulation / massage / lying on a hard mat -burning/inflammation feeling in...
  8. MartinK

    Why does even a hard lying mat tend to trigger PEM?

    @linusbert thanks, btw. normal massage give me a huge PEM! As well as warming up the muscles - there's just something really wrong with those muscles and I've been trying to figure out what for years. You have the same problem? My ME/CFS is 99% post-viral/post-infectious and the onset was rapid.
  9. MartinK

    Why does even a hard lying mat tend to trigger PEM?

    Hey guys, I've been noticing a strange symptom for a while now - I'd like to know if anyone else has the same thing. And can anyone help me to think about how it might have to do with the muscles when I have not yet been diagnosed with any muscle disorder. The thing is that my muscles get tired...
  10. MartinK

    Dr Markov CBIS Theory of ME/CFS - General Discussion

    Hey @Atlas thank a lot... now I do it correctly, all good! But...100% same experience with bruises, sore to lie on and mainly - reactions...big inflammation in place of injecting! I hope its a good sign ;-) Tomorrow 7th injection... @Hip you have same experience with autovax?
  11. MartinK

    Dr Markov CBIS Theory of ME/CFS - General Discussion

    Guys, have you also experienced that in a 0.4 ml autovaccine bottle there is actually 0.6 ml (for example?) I aspirated all the liquid (I guess I was sorry to use only 0.4 ml), but maybe it was a bad idea? The reaction, pain and swelling were quite severe yesterday - it must be doing something...
  12. MartinK

    Dr Markov CBIS Theory of ME/CFS - General Discussion

    Hi all, last week I started Enteroc-Proteus Urovacc, trying to do subc. in clockwise circle. Last days I did injection to legs - I would like to compare it with you if you also developed a red swelling there, lasting about 2-3 days. I hope this is a good response! Apart from this swelling I...
  13. MartinK

    Dr Markov CBIS Theory of ME/CFS - General Discussion

    Hi all, thanks for your opinions, yes, I don't want to rush the BCG, but from what I've noticed so far, a few people have had really good reactions to it - and they're people who have a similar type of ME/CFS to me - which is why I'm hoping the autovaccines will help as well. @Atlas - you are...
  14. MartinK

    Dr Markov CBIS Theory of ME/CFS - General Discussion

    Hi all, I finished first vaccination from dr. Markov - it was a Staph. vaccine, 7 doses. After 3rd dose I had a small reaction and after 4th dose I had huge immune reaction for few days. Lot of muscle fatigue and pain, but the following days were good - something was definitely happening! Have...
  15. MartinK

    Dr Markov CBIS Theory of ME/CFS - General Discussion

    Hi @Garz thank you so much! Now Im waiting for prepared vaccines. Finally! @Hip maybe I missed it, but was the injection under the shoulder blade discussed here? I wonder if it can be done in one person with the help of a mirror, or if the help of another person is necessary, which I assume...
  16. MartinK

    Dr Markov CBIS Theory of ME/CFS - General Discussion

    So, I just recieved updated conclusion from dr. Markov. This vacciness will be in my protocol: -Staphylo-Primavac -bacterial bivalent (Enterococcal-Proteus) vaccine -bacterial polyvalent Urovaccine Enterococcus faecalis and Proteus mirabilis +Canephron as a phytotherapy for the kidneys...
  17. MartinK

    Dr Markov CBIS Theory of ME/CFS - General Discussion

    Hi guys, I have already received the results of the analysis of my dipslides. I want to share them with you. on each dipslide of all 4, the strains are repeated - Proteus Mirabilis and Enterococcus Faecalis dr. Markov also wrote: all strains have different/specific sensitivity Now Im waiting...
  18. MartinK

    Dr Markov CBIS Theory of ME/CFS - General Discussion

    @Atlas hey, I just bought Canephron here in Czech. Yeah! And yes, I want to add dr. Markov treatment to my protocol. This is very hopeful as I have had a lot of antibiotics in the past and a lot of problems with nasal infections. I do now also protocol for endothelial dysfunction and Ivermectin...
  19. MartinK

    Dr Markov CBIS Theory of ME/CFS - General Discussion

    Hi guys, I just recieved message from dr. Markov with some recommendations. Please, know anyone good EU source of some phytopreparation for the kidneys (dr. Markov recommend Krenfors, or Canephron, or Urolesan, or Phytolysin) All alternatives welcome! :-) thx, Martin
  20. MartinK

    Dr Markov CBIS Theory of ME/CFS - General Discussion

    @Hip thank you, I will write a mail to them today. will post new info soon I hope!
  21. MartinK

    Dr Markov CBIS Theory of ME/CFS - General Discussion

    Hi guys, today I found we in Czech Republic have one clinic, which prepares customized autovaccines (perhaps in the same way as Dr. Markov - I don't know, that's why I'm writing this here, whether it's something of the same quality or not.) - https://www.paracelsiumpraha.cz/terapie/#SIAB "Our...
  22. MartinK

    How to manage transfers to the hospital for severe ME/CFS patient?

    @helen1 Unfortunately the benzos has lost its effect for me, as has Pregabalin for example. Hope @Janet Dafoe have some more advice. Thank you so much! ;-)
  23. MartinK

    How to manage transfers to the hospital for severe ME/CFS patient?

    Hi all, I have several important examinations at the hospital. Is there a small chance I could get IVIG and I have to undergo these trips also because of financial support from the insurance company. To make a long story short - I'm very severe at the moment, 24 hours in bed and the last trip...
  24. MartinK

    Dr Markov CBIS Theory of ME/CFS - General Discussion

    @Hip Thanks! Does that mean it's a fairly straightforward result that is very common if I understand correctly? In this case it would be good to clarify directly from dr. Markov, or its easy to start own treatment - for example, the IRS-19 you are talking about above, or I also have Ismigen...
  25. MartinK

    Dr Markov CBIS Theory of ME/CFS - General Discussion

    Yea, I have done this for some time, but not sure with interpretation and I don't know how to start a treatment that will be as targeted as possible.
  26. MartinK

    Dr Markov CBIS Theory of ME/CFS - General Discussion

    Guys, we know how many people here have already used the diagnostics of dr. Markov and is he following his treatment and with what results? I know of two here... Im personally not sure if I have a kidney infection, but I think 99% that there is something wrong with my nasal and oral cavity...
  27. MartinK

    Reason why Goleic worked for some and current versions of GcMAF don't

    amazing idea...huge support!
  28. MartinK

    Do sore throat / tonsil ulcers make you worse - PEM/inflammation?

    Hi all, again I have big troubles with symptoms in the upper respiratory tract. I only need to talk for a while and soon my throat starts to scratch and my whole body then feels inflamed with all known flu-like symptoms. My hands and feet are cold...really liek flu ...but without flu. I've been...
  29. MartinK

    Tenofovir Alafenamide anyone?

    do I understand correctly? - better safe profile than Valtrex? ...and lower load for kidneys and liver? wow! I found this (in association with EBV): "In a cell-based assay, TAF was 35- and 24-fold and TDF was 10- and 7-fold more potent than acyclovir and penciclovir, respectively, and TAF was...
  30. MartinK

    Tenofovir Alafenamide anyone?

    have you also looked into whether there is also a sefe profile difference in Alafenamide and other Tenofovir forms?