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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. T

    About to start Ivig - but still unsure...

    Ema, I think my immunoglobulins are in the lower range, but still okay. I dont have much usual flu-like infections but probably a chronic one. So Im prepared for a local reaction and headache. My normal dose will be 10 ml I think, but I am supposed to start with a lower dose. What is yours? I...
  2. T

    Has anyone done stem cell treatment?

    How much did the person you read about pay and where did she do it? If you know it...?
  3. T

    Are steroids harmful?

    I disagree. 25 mg of prednisolone can be extremely dangerous if the underlying cause of your cfs is a persistent infection with Lyme disease or Chlamydia pneumonia. Be careful.
  4. T

    About to start Ivig - but still unsure...

    My Doc said that Ivig would be an option for me because I have persistent neuralgia and a weak immune system. So I have the Ivig (subcutaneous) already in my fridge. But... I am so sensitive to meds. I got worse from so many meds. And now I am unsure if I should dare Ivig. Dont want to get...
  5. T

    Where do I get good sublingual B12 in the EU?

    Getting decent sublingual Methyl B12 has become so difficult. One problem are new strict custom laws in the EU regarding supplements so that you are not alllowed to receive US products anymore. My other problem is that I am intolerant to fructose and most good products like Jarrow or Enzymatic...
  6. T

    One more diagnosis: lactose intolerance

    After a H2 test i was just told I have lactose intolerance. It doesnt really seem to be a serious condition, but I would rather like to know why also this? Why have I never had problems with milk and cheese and now, after getting CFS, I dont tolerate lactose anymore, am diagnosed with asthma...
  7. T

    Which tests for parasites do you recommend?

    One doc told me you could also have too low eosinophils with parasites because the body uses them so much. I also havent found a good parasitologist.
  8. T

    How much B12...

    ... do you take?
  9. T

    Where do I get good sublingual B12 in the EU?

    Which dose is better - 1 or 5 mg? Tried 1, but didnt really help so far (3 weeks).
  10. T

    Insomnia from Valtrex?

    I started with tiniest doses you can image (far less than one pill) since I am so hypersensitive - but still got insomnia.
  11. T

    What has helped against your trigeminal neuralgia?

    Thanks Wonko. Great the laser therapy helps you, dsdmom. One doc told me he would only recommend that to old people because it damages the nerve. But then again if it takes the pain propably its worth it. I hope I get the sublingual methyl-B12 soon I already ordered.
  12. T

    Insomnia from Valtrex?

    Then maybe its no coincidence. When did you sleep normal again after stopping it? Anyone else with insomnia from Valtrex?
  13. T

    Insomnia from Valtrex?

    Wonder if I got my insomnia from Valtrex which I started some days ago or if it's just coincidence?
  14. T

    Another specialist for gut-related Cfs around Germany than KDM?

    Thanks. May I ask you how much? Is it possible to leave out things (e.g. lab tests that you have already done) so that you have to pay much less?
  15. T

    Cured Myself After 4 Years of CFS

    I did, but only the catecholamines (only blood test): adrenalin and dopamin were fine, noradrenaline a bit too high (20%). No ground breaking results unfortunately.
  16. T

    Another specialist for gut-related Cfs around Germany than KDM?

    I am considering seeing KDM since my Cfs seems to be gut-related. On the other hand I can not really afford the 4000 Euro (i think this was the price?) you have to pay for him and his lab tests. So is there another - cheaper - specialist for gut-related Cfs around Germany than KDM? Does...
  17. T

    What has helped against your trigeminal neuralgia?

    Thanks. Why atenatolol? Just read that its usually used for heart diseases.
  18. T

    Where do I get good sublingual B12 in the EU?

    Thanks. Maybe I dont get it. But when I put "b12 The Jarrow and Enzymatic Therapy sublingual" in the search box at iherb I dont seem to get the right product? http://www.iherb.com/Search?kw=b12+The+Jarrow+and+Enzymatic+Therapy+sublingual Anyone with a direct link to the right stuff...
  19. T

    Where do I get good sublingual B12 in the EU?

    Can I order it anywhere online or is it better to buy a special sort of sublingual b12 at a special place?
  20. T

    What has helped against your trigeminal neuralgia?

    Great info, thanks.
  21. T

    What has helped against your trigeminal neuralgia?

    Thanks, b-vitamins and heat pads seem like good ideas. Crux, in which form (oral, iv, sublingual) and dose did you take b12? did a blood test confirm a deficieny or did you just use it regardless to levels? Cos when I test for b12 i already have high levels.
  22. T

    What has helped against your trigeminal neuralgia?

    Unfortunately I have developed atypical trigeminal neuralgia. Constant nerve in my upper face, triggered by using my eyes (reading, watching TV or looking at a computer screen) but also by sound. Ouch. I would love to hear from others who found something against this.
  23. T

    Anyone else with neuro stuff like burning pain and tingling?

    So multiple neuro symptoms dont seem to be so uncommon. These days my worst is that i have trouble moving my arms (too heavy) and face muscles: Even simply talking is hard work sometimes. Strangely at night my arms and face muscles even seem impossible to move. Dont know why it gets worse when...
  24. T

    Anyone else with neuro stuff like burning pain and tingling?

    When i read about cfs i rarely read about other neurological symptoms than headache, memory problems and brain fog. I do have tons of other neuro symptoms like tingling, twitching, burning pain, heavy arms and legs, ataxia and would like to know if this is common with cfs? These symptoms dont...