Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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Whats FINALLY worked for me.

Discussion in 'General Treatment' started by Kathyinca, Jul 26, 2016.

  1. Kathyinca

    Kathyinca

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    I'm throwing this on here because I've searched online twice a week for six years, hoping to find anything to slow my disability. I've lost more strength and energy every year, until now. I'm at a point where I can only stand up for a few minutes, can't walk farther than the end of my driveway, and no longer drive myself: BUT I am finally, FINALLY getting better, not worse. I wish I could tell you what, specifically, in my regimin is helping, but like so many of us I take handfuls of supplements and meds every day. Most likely to be causing my improvement: Arteminisin i.v. once a week and daily oral; Curcumin i.v. once a week and daily oral; low-dose naltrexone daily; daily Valcyte. What I've tried that slowed my decline, but didn't reverse it; hyperbaric oxygen dives for almost a year; i.v. Glutathione, Myers cocktail, vitamin C; supplements of ATP and a dozen other things.

    Of course insurance doesn't pay for any of this except the Valcyte; I've found naltrexone for a buck a pill, and the rest is hella expensive and I just suck it up and pay it, grateful every day that I can cover it for another month. If you can just try the Arteminisin (also called artusinate) and Curcumin (derived from turmeric, the main spice in curry), DO IT. Mega-doses. Honestly I don't think the oral stuff helps even a fraction of what the i.v. does. Arteminisin is an anti-malarial that they're finding targets a wide range of things; Curcumin is a super-potent anti-inflammatory; Valcyte works against herpes 6, which is a "silent" virus found in many CFS patients; and Naltrexone is a very, very tiny dose of an opoid that clears brain fog, depression, and lack of motivation.

    I've been sick for so long that it took a month or two to realize I was improving - suddenly I was asking friends over again, or wanting to organize or decorate a corner of my house, or cooking an egg. Big stuff for me! And just now, the most exciting thing of all, I realized that I didn't have to lower and raise my body with my arms helping to use the loo!! That sounds stupid, but it's been demoralizing that muscle weakness had robbed me of the ability to do something so simple as use the toilet. The deterioration of muscle has been the most bothersome and intransigent symptom I've had, and even just to stop it is thrilling.

    So there you go. Everyone is different, I have no idea if my regimin would help others, and I can't even say if it's a synergy between these things and the 20 other things I still take. I will say though that these are all cutting-edge CFS treatments easily googled. Feel free to ask me any questions, and my best wishes to all of us walking this difficult path.
     
  2. Beyond

    Beyond Juice Me Up, Scotty!!!

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    I am ready for LDN, and will get some doctor to prescribe it to me.
     
  3. lnester7

    lnester7 Seven

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    You can get online no prescription (you might have to divide on water to start so you do not start at such high dose). I will PM you.
     
  4. Kathyinca

    Kathyinca

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    As it is an opoid (heroin-ish), I'd rather rely on a reputable compounding pharmacy. Cort recommended one at one point, I'm sure you can google it. But yes, the naltrexone made a WORLD of difference in my mood and motivation; the only disappointment with it was that it didn't help my muscular weakness. Still, sitting in a chair and wanting to make art, feeling optimistic and healthy, was a big difference from lying in bed wondering why I even existed.
     
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  5. Hugo

    Hugo Senior Member

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    How do you get curcumin and artemisin i.v.?
     
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  6. Hugo

    Hugo Senior Member

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    Ive been taking artemisin both orally and in spray form. I.V. sounds interesting.
     
  7. drob31

    drob31 Senior Member

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    How do you get IV Arteminisin?
     
  8. JaimeS

    JaimeS Senior Member

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    Same question here as with everyone else -- IV Artemisin and Curcumin? Never heard of such a thing. Let us know where you got it!
     
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  9. *GG*

    *GG* Senior Member

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    Curcumin is not hard to find, major online Supplement companies are going to have it. Artemisin I have never taken, so don't know about that one.

    GG
     
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  10. TigerLilea

    TigerLilea Senior Member

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    Wouldn't you have to go to a licensed doctor to be getting IV curcumin?
     
  11. Hugo

    Hugo Senior Member

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    Yes I wonder that to, I think I saw curcummin I.V in a study once,
     
  12. JaimeS

    JaimeS Senior Member

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    As an IV treatment?
     
  13. Gingergrrl

    Gingergrrl Senior Member

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    I am curious like the others, where do you get an IV of arteminisin and/or curcumin? I don't think I would try this but am so interested in things that have helped other people. I know curcumin can reduce inflammation and some places I have read that it can help MCAS reactions. Do you have any known auto-immune issues? Am always curious when something has helped someone to try to put in context if they are similar or different than myself (subgroups etc.)

    That is absolutely amazing news. I don't think I have ever talked to you before and don't know your whole history but all of those things are great improvements and am thrilled for you.

    I can relate to this except in the reverse that my legs are strong and my arm muscles are incredibly weak. My arms have re-gained a tiny but of strength this week after one IVIG treatment so I know that anything is possible.

    Agreed and muscle weakness, especially in my arms, lungs and diaphragm is my biggest problem that I dream of correcting and like you said, even just to stop it is thrilling.

    Thanks and I may be asking you some more questions later... actually I have one now LOL... with all the different IV treatments that you have tried, have you ever tried IVIG and if so, how did it work for you?
     
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  14. Hugo

    Hugo Senior Member

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    Last edited: Jul 26, 2016
    Sancar likes this.
  15. Bansaw

    Bansaw Senior Member

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  16. Kathyinca

    Kathyinca

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    Wow, hi everyone! I go to Dr. Miguel Gonzalez in Thousand Oaks, CA. He specializes in Lyme disease and alternative medicine, although he was head of cardiology at our hospital prior to that. I began with him a year ago primarily to try Hyperbaric oxygen therapy and i.v. Glutathione and Myers cocktails. He has always been open to me trying anything that I can provide some research for, and his protocols include 23andme, heavy metal, etc testing. Lots of testing, holy fuck, the testing. I did like the glutathione, as it gave me an energy bump, but no real lasting help. Being in a big city (this is just outside L.A.) I probably have more treatment options than many: just around me are three "infusion" centers (fancy word for i.v.s).

    The artusinate and Curcumin are great, but as I said, it may be the Valcyte that is actually fueling my muscles again, I don't know. I'm certainly not going to change anything now that I'm actually feeling improvement! I know the F.D.A. Is trying to stop Curcumin i.v.s, as it's shown great promise in treating cancer and inflammatory diseases. Surely it's just coincidence that now that Pharma wants to make money off it, it's been banned, right? Certainly I would try liposomal, or anything else to stay on these drugs.

    Yes, I use Longvida Curcumin (Prohealth brand)daily orally along with the weekly I.v., Super Arteminisin from Nutricology daily along with the artusinate i.v., lots of supplements from Thorne, Prohealth, and Researched Neutraceuticals, Naltrexone 4.5mg a day and Valcyte 450mg a day.
     
    Last edited: Jul 26, 2016
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  17. Gingergrrl

    Gingergrrl Senior Member

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    Is Dr. Gonzalez a cardiologist or naturopath? Does he see patients who do not have Lyme disease? I had some benefit from nebulized glutathione in the past but never tried the IV form. Am fascinated by your story (although I had horrible reaction to Valcyte so we are different in that way.)

    Am tagging @Mary b/c curious if she knows your doctor?
     
  18. Gingergrrl

    Gingergrrl Senior Member

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    https://www.drgonzalezmd.com/services/

    Found his website and it looks very interesting to me. He is probably about an hour to 1.5 hrs north of me. I still can't quite tell, is he a cardiologist? It says he is an MD vs. ND (I am totally okay with both) but curious what his specialty was? (If you happen to know?)

    Thanks again!
     
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  19. Kathyinca

    Kathyinca

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    I think he has dropped the cardiology completely, and identifies himself as a naturopath. Because I sit for 2-3 hours twice a week with a tube in my arm, chatting with others, we are all really family there. The support is amazing, and I have seen some jaw-dropping healing in Lyme and cancer patients there. He focuses on finding and treating all the co-infections etc. which I think has also helped me.

    Specific symptom-wise; intensive allergy testing showed I have leaky gut syndrome (literally everything I eat regularly was in my bloodstream), been taking supplements for ages for that, think I still have it tho

    Babesiosis found, I think the Arteminisin and maybe the Valcyte helping that

    Candidiasis, supplements for that

    POTS and mild heart arrythmia, I add a bag of saline on days when my i.v. Is shorter, as CFS often causes low blood volume. I've also raises the head of my bed slightly to help with that. Major improvement.

    IBS (for like 30 years) better since going gluten free, despite not being celiac

    Interstitial cystitis, i.e. Irritable bladder, vastly better, again Arteminisin or Valcyte probably

    Brian fog and depression, low dose naltrexone is a godsend, no joke. Vast improvement.

    CFS, which I was diagnosed with 8 years ago (at first not so bad as long as I took it easy, it took a couple years to realize this was gonna be a major problem, was a sudden definite onset of viral-ish illness), I've tried most all the stuff you read about here, been to many doctors, and almost can't believe something is actually working. I've had short-term respites and energy boosts, felt better for a couple of months at a time, but NEVER felt like my muscles, lungs and heart were working "right" again until now. Crossing my fingers for myself and all who read this for further health improvements for all of us!
     
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  20. Hugo

    Hugo Senior Member

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    Interesting I belive youre right in the i.v. treatment. I thought a lot about the lack of uptake for orally taken treatments. I live in sweden so its probably not as easy as in L.A. to get hold of a doctor here. Unfortnatly this stuff is even more regulated here than in U.S
     

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