Post Lyme Disease and Chronic Fatigue Syndrome (ME/CFS) - Are They The Same?

Discussion in 'Other Research' started by Cort, Aug 8, 2016.

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  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    People who have chronic Lyme disease are a mystery in the same way that people with ME/CFS who come down with an infection and never recover are.

    A recent study that asked why chronic Lyme patients don't recover could have implications for ME/CFS. It also asked how similar people with chronic Lyme disease and ME/CFS are. Check out a study that was chock full of surprises in Simmaron Research Foundation sponsored blog:
     
    Issie and bobby like this.
  2. weyland

    weyland Well-Known Member

    Good to see work like this being done. People with PTLDS deserve targeted study, not to be thrown in the CFS garbage can, never to be seen again.
     
    Issie likes this.
  3. Tammy7

    Tammy7 Well-Known Member

    Cort..........I encourage you to read the Lyme chapter in the book I sent you.;)
     
  4. ShyestofFlies

    ShyestofFlies Well-Known Member

    I am super glad thst PTLDS/CLD are getting some focus, they deserve treatment and I feel terrible for them.

    I cannot speak for anyone else, but I know for a fact I do not have PTLDS, but do have CFS/ME- I got an acute lyme infection recently.

    Now I can see how the lyme and coinfections could trigger CFS for some people, but it is not for all of us and they are definately not the same! Being CFS is a collection of symptoms and trends and not likely one specific disorder with a single cause, lyme is just one of many possibities in some patients.
     
  5. cherubim

    cherubim Well-Known Member

    I am having difficulty putting together the pieces off a massive puzzle. I had fibro and recovered using Valcyte. I did well, returned to working, then underwent surgery and developed CRPS - there was severe nerve damage.

    We lived in an area full of lyme, and many in our town came down with it. It was always in the back of my mind, but I tested negative for it. My doctor said I had "past lyme exposure" - which showed I apparently overcame it.

    Now, I'm feeling extremely washed out again - reminiscent of the fibromyalgia days I'd like to forget.

    I read where IV ozone has cured many ills, and wondered if anyone has tried drinking it, rather than IV, which would require a doctor?
     
  6. Tammy7

    Tammy7 Well-Known Member

    It's probably the virus that caused your fibromyalgia that has reactivated.
     
  7. cherubim

    cherubim Well-Known Member

    I worried about that.
     
  8. cherubim

    cherubim Well-Known Member

    It may be it. The surgery was very stressful. I would guess an antiviral protocol would be in order.

    What antivirals does everyone here take?
     
  9. cherubim

    cherubim Well-Known Member

    Has anyone here tried drinking ozone? I found it a little frightening, but read that people did it and recovered from many things.
     
  10. cherubim

    cherubim Well-Known Member

    Thank you very much. I didn't know that - maybe I went into relapse because I went off of the Valcyte, but then underwent enormously stressful surgeries and the virus reactivated. It's hard to believe a virus I contracted at 16 could still be doing it's damage at this late stage. I was also on the famvir but my doctor switched me to Valcyte and I got well. All my energy returned - then I headed into the storm of surgery. Fell down a black hole.

    I rooted out my bottle of Valcyte and took it. I am surprised there are no antivirals developed that actually kill viruses. I don't have a refill. I found a coupon online that significantly knocked the price down.
     
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  11. cherubim

    cherubim Well-Known Member

    I'll look that up - thank you. I was on a generic and responded. I think I still have some famvir left. I'll look up immunovir. Not sure what an av responder is - I guess because I got well after Valcyte. I saw Dr. Pridgen and I recall having much distress on famvir. I emailed him and asked what to do, and he said "push through it." I did and then got slowly better, and then my regular doctor switched to Valcyte. I was surprised that not everyone recovered with this - so there must be other things feeding into it. I also did a lot of supplements - so something in unison worked.

    I'm looking into Nrf2 activators now - as it seems that oxidative stress is rampant in any unwell state. I recently began SOD - but it has wheat in it - and I don't do well with wheat. But I couldn't find any other way to raise my SOD levels.
     
  12. Tammy7

    Tammy7 Well-Known Member

    These are the things I take that are anti-viral. Cats Claw liquid, Licorice root liquid, L-lysine. Lately I've added others on and off that are also anti-viral such as lemon balm, Monolaurin, Olive leaf, silver hydrosol.
     
  13. cherubim

    cherubim Well-Known Member

    Thanks. I recall my doctor telling me awhile back that licorice root was a potent antiviral. I'm going to order some of it. I'm a little afraid of silver due to the possibility of turning gray - although I would guess one might have to take a lot. I used to take olive leaf awhile back, so may have a bottle of that around somewhere in my supplement graveyard. I have coconut oil, so I could take that - but I think monolaurin is probably more potent. I've been buying these delicious coconut bars from Swansons - called Oskri. Maybe they have some natural antiviral action in them. I hope there are some good Labor Day sales.
     
  14. Issie

    Issie Well-Known Member

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  15. Issie

    Issie Well-Known Member

    I've heard some do well with Ivermectin. How does most take it? What are the results?

    I can't use Sulfa drugs. So Bactrim is out.

    Issie
     
  16. cherubim

    cherubim Well-Known Member

    That's a smart product - artemisinin coupled with anti-inflammatory SOD. I bookmarked it. Can you tell me how you were diagnosed with Lyme?
     
  17. cherubim

    cherubim Well-Known Member

    I was reading on a website on autoimmunity, called "The Marshall Protocol" that doxycycline, and several others helped people recover from things like arthritis. I wonder if it's really lyme that's being killed off? They use Olmarstan also - some pharmaceutical.

    Has anyone looked into ozone? I read where people can drink the purified kind, and drink ozonated water. I don't know if ozone would stay active in water. I know it stays active in avocado oil because I buy it. I'm unsure if it would kill all the pathogens/ parasites in Lyme. They sell it on Amazon.
     
  18. cherubim

    cherubim Well-Known Member

    Wow - something to be cautious of then. Meningitis is very serious. A relative contracted, I believe encephalitis from a mosquito bite. I am very wary of mosquitos, ticks, and spider bites now. I'm wary of the chemicals sprayed in the yard just as much.

    Did you take anything for the neuroinflammation? I was shocked my daughter got shingles and is still having bouts of nerve pain from it - I think she said it's the trigeminal nerve. She was accidentally bitten by a dog, and developed one symptom after another. I was surprised the hospital washed it, but never put her on an antibiotic. She thinks something was passed onto her from the dog bite.

    I was focusing on neuroinflammation, and started Ibudilast, which I'm tolerating well. I ordered memantine from a place in the UK but never got it. Then I considered a trial of dexamethasone, which came up in research.
     
  19. Issie

    Issie Well-Known Member

    http://forums.dinet.org/index.php?/...ldom-have-severe-pots-or-mcas/#comment-244301

    There is alot here on protozoa and when I found out I had them.

    Protomyzoa Rehumatica is from mosquitoes mostly. My doc says it's worse than Lyme. No known "cure" .

    Issie
     
  20. cherubim

    cherubim Well-Known Member

    That's staggering. You're around my age. I am so wary of anything now - spiders, mosquitos, ticks. Even fleas harbor something I read. I read that eating salads out can put one at risk of picking up a parasite.

    Have you ever tried the Cowden products? He sells antimicrobials. When I had the fibromyalgia - I tried everything under the sun almost. I couldn't tolerate them though. Stephen Buhner used to recommend Rainforest herbals that were supposed to kill different things.

    Have you ever considered drinking ozonated water, or purified ozone?
     
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