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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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    LDN sublingual

    I don't know whether there might be a special sublingual form but when my son says there is then he must have read about it somewhere. But not where you can get it. I will tell him about putting the powder under his tongue.
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    LDN sublingual

    Thanks for all your posts. In Germany the GP can prescribe it without problems. Over the counter isn't possible. There is a pharmacy somewhere in Germany where they put the LDN into a tincture. But our local pharmacy only makes capsules. Our son would like to have a sublingual form to bypass the...
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    LDN sublingual

    Does anyone know where to buy sublingual low dose naltrexone? Preferably either in Germany or in the EU. Thanks in advance
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    Treatment with KDM miraculous so far, need help with dysbiosis though

    Hi, about Filgo... 2 weeks ago we were in Mechelen and he said " next year." In May he told us Filgo might be out this year.
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    Opinions on de Meirlier

    @Banana94 and @Thinktank I think the same. How long are you going to wait until there will be found a cure for ME/CFS? How can it be found if there aren't Guinea pigs;) I don't get a treatment around here for me but have to say that another PR member recommended a Dr. in Germany (I would never...
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    Opinions on de Meirlier

    These unreliable test... which ones do you refer to? There are normal blood tests like thyroid ones,then tests every Gp would do, some test are sent to the University of Brussels lab. OK, there are tests done by a private company but again... which ones are "bogus"? I have said this some times...
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    Anyone knows a doc in germany?

    @NotThisGuy Yes, I know of a member here who just had an appointment at Himmunitas.
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    Anyone knows a doc in germany?

    KDM is great in looking at a lot of issues, Inflammation, gut, ME... If we hadn't found him some members of our famiily would be on antidepressants because this is what you get in Germany ( in most cases) when you are suffering from symptoms nobody knows what to make of.
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    Anyone knows a doc in germany?

    I'm from Germany. For treating Lyme I can recommend Dr. Klemann in Pforzheim. He has got patients from all over Europe. Some days ago there was a documentary on TV where Dr. Scheibenbogen was talking about the Rituximab study with Norwegian colleagues( Fluge and Mella). But I think it was not...
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    Waking up with joint pain and stiffness. What could it be?

    @wonderoushope I took the amino acid Lysin whic helped a lot getting rid of most of the pain.
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    Waking up with joint pain and stiffness. What could it be?

    I have the same issues. When i wake up it's stiffnes and pain all over my Body. Ear pain and stiffness I know too. And I get better (most days, some not) when being up. These sore points over your Body sounds like fibromyagia, but where does it come from? I have been diagnosed with fibro many...
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    Opinions on de Meirlier

    In Germany I would recommand Dr. Klemann in Pforzheim for Lyme. He treats patients from Sweden, Norway, Croatia, UK... And interestingly he treats similarly to KDM. He is an ILADS member.
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    Is lysine helpful for all types of viruses

    I got Lysin prescribed against active EBV and the active form is gone now. My doctor told me it could come back and I should recognise it because of infections...
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    Big thinking about trip to Brussels after unfunctional treatment CFS/Lyme in Czech

    I don't know whether you ask me or Martin about EBV. I was tested and then treated. Now my active EBV is gone but KDM told me it might be back. The treatment for EBV wasn't expensive at all.
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    Map of US Based ME/CFS, POTS, and Lyme Doctors (Feedback Please!)

    Why shouldn't Dr. de Meirleir be included? I cannot see that he is not working as a science based doctor. I know a lot of PR members here of many countries who see him regularly.
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    What are good adjunctive therapies to protect against the adverse effects of antibiotics?

    Yes @Thinktank I would be interested in this too...
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    LDN Week 3

    If I remember correctly it was 2.5 mg. I would have to look it up but can only do so next week when I'm home.:)
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    LDN Week 3

    No, no problems at all. I'm taking it for more than a year now.
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    Suggestions for a woman with sweats

    My daughter is just being treated for Lyme and babesia. The latter has "profuse night sweats" as a very important symptom. Babesia are difficult to test, even with the FISHtest. Certainly menopause or/and thyroid problems may be responsible as is ME/CFS.
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    Did you have a vaccination not long before developing ME/CFS?

    My son got a vaccination for Tetanus and some sort of Hepatitis. 3 month after this he complained about being tired a lot. Some months after that he got a cold, sore throat, then sinusitis and never came back to feeling healthy. Finally he got his diagnosis of ME/CFS.
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    Big thinking about trip to Brussels after unfunctional treatment CFS/Lyme in Czech

    Well, he helped me a lot in one year flat This has taken place from August 2016 to August 2017. I'm not completely OK but as my therapy isn't finished there might be more good to come. I have to say that I have been ill for more than 30 years with no help from a lot of specialists I have seen in...
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    Low-dose Naltrexone

    I take 4.5 mg every morning. Had to start with half that dosage. It takes away some of my muscle pain (am diagnosed with FM) but not all. My local pharmacy produces capsules from Naltrexone.
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    Gammanorm immunoglobulin and low white blood cell count

    My daughter is also on Gammanorm and has had leukopenia before. It didn't worsen under Gammanorm.
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    Pain help! At the end of my rope

    I have fibromyalgia and take sometimes Celebrex. In the evening I take Lyrica because it makes you tired. What also works for me is LDN(low dose naltrexon). It takes not all the pain away but a good deal of it. Magnesium has been mentioned above as well as Acetyl Carnitin. A small dose of...
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    Does LDN lose it's effectiveness over the long term?

    I'm on LDN for a year now. It doesn't take all muscle pain away a but it's really tolerable. And when I sometimes do too much I find myself in pain again. That's not a bad thing because I then know how much LDN helps me. So for me it still works.
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    Fibromyalgia and migraine pain -help

    Hi, LDN works with me. My pain isn't completely gone but a lot more tolerable. I don't have any side effects. Don't know about children taking it.
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    Anyone Else Have Head Pressure, Foggy Vision, Difficulty Driving

    @Valentijn Good idea with the EPA/DHA fish oil. I will tell my son...
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    Anyone Else Have Head Pressure, Foggy Vision, Difficulty Driving

    Hi, yes, my son has had it last winter. He went from one sinsusitis to a sore throat and then back again. When these infections were ove the pressure between the eyes and foggy vision , pain at the forehead etc didn't go away. He saw lots of doctors (eye doctor 3 times, neurologists...
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    anyone under 30 ?

    Hi, my daughter is 29 and has been very ill for more than 4 years. She couldn't finish her Master course on computer sciences. And she is able to read here but cannot write. She is completely housebound and has to rest in bed a lot. I wouldn't say that younger onset leads to a milder version of...
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    Interesting first appointment with Dr. KDM

    @Folk Do you mean this:http://forums.phoenixrising.me/index.php?threads/australian-dr-finds-95-of-his-300-m-e-patients-have-evidence-of-lyme.42442/ It's not KDM who stated this...