Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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1.5 years after treating lyme and i think I have a relapse

Discussion in 'Lyme Disease and Co-Infections' started by nofuture, Jan 30, 2015.

  1. nofuture

    nofuture

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    I have been treated for lyme back in late 2012 all the way until march 2013. This was done by Dr. Martin Lerner of Beverly hills, Michigan. He used IV Antibiotics for 1.5 months until I could not tolerate them anymore and then around 3 months of oral antibiotics. I felt great! But the full 7 days per week of stress in school I made me move backwards. At about 1.5 years into post treatment i started to get other symptoms of fatigue once again. I thought it was depression or something along those lines. The symptoms match again. Unfortunately I did not leave time for visting doctors since i attend graduate school full time but the symptoms of low appetite and loss of energy are there. I had some left over antibiotics to get by until I can find a LLMD to get this disease under control. Just out of curiosity for those of you that ha lyme disease how many times did you get treated before it was completly gone?
     
    Last edited: Jan 30, 2015
  2. Alea Ishikawa

    Alea Ishikawa

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    Though I have not gone through chronic Lyme treatment personally, I have heard it can take at least about a year, maybe 2 years on average. Some people might be able to chime in about the Cowden protocol or similar.

    Were you on doxy only, during the oral antibiotic phase? The reason I ask is because of the Sapi et al. study. You might also find the Embers et al. trials interesting. I've seen the combination of oral antibiotics with herbals to increase the likelihood of beating the pathogen. But what you take might depend on what co-infections you have, and also what doctor is treating you.

    I'm glad you at least got a break from your symptoms. :) This gives me hope.
     
    physicsstudent13 likes this.
  3. Alea Ishikawa

    Alea Ishikawa

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    Valentijn likes this.
  4. Valentijn

    Valentijn Senior Member

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    After 3 months of IV antibiotics and 4 months of oral, I still react to them with classic Herxheimer symptoms ... so the doctor has me staying on them. He does have me switching to different ones now though, and I'm getting an inadvertent break while the pharmacy orders them internationally. I'm feeling great now after two weeks off of them, but I know I still need to finish the antibiotics until the die-off symptoms disappear.
     
  5. nofuture

    nofuture

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    @Alea Ishikawa I was only on doxy for the oral part. I am trying some herbals like Resveratrol and Cat's claw. Its been a rough year for me.

    @Valentijn I looked at the research and it says that antibiotics only mimic the biofilm to develop which makes it harder to get rid of lyme.
     
  6. duncan

    duncan Senior Member

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    nofuture, we are the research. We are living it. It's good to read whatever you can find, but you need to know this story is still being written.

    So, somethings will work for some people some of the time.

    No one knows why there are no certainties yet. Well, yes, in large measure because we haven't looked hard enough or long enough or in the right places - that's pretty much a certainty.

    But we are learning, so keep researching. I'm just throwing out the hazard flag that there is not necessarily a defined pathway for everyone yet.

    By the same token, what may work for you may already be published. An example might be Pamela Weintraub who used an approached devised by Burrascano that he perfected - if I remember correctly - for himself. The question is knowing or guessing when to try something. That's what I meant when I said we are the research. Hopefully, you have a good TBD clinician that is knowledgeable and that can help.
     
    Last edited: Feb 2, 2015
    Bessie likes this.
  7. Wally

    Wally Senior Member

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    @nofuture,
    I am not being treating for Lyme Disease, but I thought I might make a suggestion about getting some additional information about treatment for your illness.

    The Open Medicine Institute in Mt. View, CA, specifically Dr. Kaufman is seeing a lot of patients with Lyme Disease and/or ME(CFS). It is my understanding that many of these patients are being referred by other physicians when their Lyme treatment protocol fails. I am not sure if Dr. Kaufman would have anything else to offer, but it might be worthwhile to see if Dr. Lerner could offer up any other possible Lyme treatment options after consulting with the Open Medicine Institute (or perhaps you could call or e-mail the Institute and see what additional information they could provide you). http://openmedicineinstitute.org/contact-us/

    There are PR Forum members who have posted about their positive experiences with Dr. Kaufman. So if you are interested in looking into this further just use the search function to look for information on the Forum about Dr. Kaufman.
     
  8. justy

    justy Donate Advocate Demonstrate

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    From looking on Lyme forums, I see that relapse is common. Many LLMD's now are keeping people on herbals protocols after antibtioic treatment. some people are staying on abx for years. Perhaps you would be best off asking on a dedicatied Lyme forum or facebook group?
     
    Daffodil likes this.
  9. Alea Ishikawa

    Alea Ishikawa

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    Okay. I've read detox aids (pinella, parsley, etc.) can help noticeably while doing banderol and samento (cat's claw derivative).

    Also, sometimes dosages are too high and need to be split. One member put 1 drop in 8 oz. water, mixed it, and drank 1 oz. to tolerate it better.
     
    physicsstudent13 likes this.
  10. nofuture

    nofuture

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    Thanks for the support guys. I am following Stephen Buhner's protocol with Resveratrol 200 and Japanese knotweed. At the moment my spleen area feels like it is going to explode. There is so much discomfort in that are right under my left rib cage. The fatigue is overwhelming.

    I ordered some teasel since people say it works, but it is a 3 week delivery.
    I ordered cannabis oil since people said it may help.

    Its convenient to know this disease is man made by our cia agency.
     
  11. Alea Ishikawa

    Alea Ishikawa

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    I read here and here about using Red Root tincture for spleen issues while on the Buhner protocol. According to here, Red Root is contraindicated when taking a blood anticoagulant/coagulant.



    Were you also tested for co-infections, particularly babesia? The reason I ask is because Buhner drew a link between spleen issues and babesiosis:

    Dr. Steve Harris also talked on babesia/spleen per here:

    I have heard a particular co-infection can give symptoms similar to Lyme and can make Lyme harder to treat.
     
    Dufresne likes this.
  12. nofuture

    nofuture

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    I have an appointment with Dr. Lerner on the 17th and I will ask for him to test me for that co infection. Ill order some red root. I just got the book Healing Lyme and I now see that this co infection interferes with normal production of red blood cells. I would like to know by using the how long to notices some kind of improvement? Thanks.
     
    Last edited: Feb 4, 2015
  13. Daffodil

    Daffodil Senior Member

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    nofuture....perhaps celebrex might help? there are autoimmune components to these diseases, I think.

    I have heard of some people having success keeping Lyme at bay with the herbals.

    IV vitamin C might be another option?
     
  14. nofuture

    nofuture

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    You know I have been looking into the vitamin c therapy iv. I live in Michigan and do not know any facility that does administer it or if its covered by insurance. A veterinary doctor whos a friend of my dads says vitamin c iv can cure cancer. Its worth trying. I bought some hydrogen peroxide to take drops but the herx is insane even at 1 drop.
     
  15. Dufresne

    Dufresne almost there...

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    Sounds like you have it bad. Are you eating sugar? I've found taking sugar and carbs out of the diet for the most part to be absolutely necessary. Starving the buggers keeps them from proliferating, then you can start to reduce the load. It also reduces inflammation which makes the herxes easier to handle. That's how it feels to me anyway.
     
    justy likes this.
  16. duncan

    duncan Senior Member

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    Do your homework first, but perhaps you may wish to consider the triad: something like mino to kill off the bacteria, along a cyst buster, and finally, look to what Zhang and Lewis suggested for persisters. Also, you may want to remember that it took three applications for the Burrascano thing.

    I hate making treatment recommendations because we are all different.

    But that's a formula I am looking at, for what that's worth. And that's just straight abx. Very smart peeps like Sapi have advised me to not ignore herbal supplements. I ignore them anyway, just because. :)
     
  17. Sushi

    Sushi Senior Member Albuquerque

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    Good to check whether you have the right form of hydrogen peroxide. I've been told that the pharmacy stuff is not the right kind. I had IV hydrogen peroxide and it was extremely helpful, but...hard on the veins.

    Sushi
     
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  18. Alea Ishikawa

    Alea Ishikawa

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    It might be a good idea to rule out several co-infections: Anaplasma/Ehrlichia, Bartonella, Babesia, and mycoplasmas. I'm guessing you're not exhibiting the signs of Q Fever, Tularemia, or Rickettsia (Rocky Mountain Spotted Fever)?



    After using red root, one person here said they felt a "bubbling" effect after an hour and the pain went away in a week. Someone here said their pain decreased after about 4-5 days of use and went away shortly thereafter. Another person here said they still felt pain while on it but the pain was worse when off it.

    It might depend on the person, how much the spleen is affected, etc. Person #2 suggested trying it for about a week or two and if no relief switch to something else.
     
    Last edited: Feb 4, 2015
    justy likes this.
  19. Alea Ishikawa

    Alea Ishikawa

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    Good point.

    @nofuture - Are you taking a biofilm buster like serrapeptase or lumbrokinase?



    Something that caught my attention:
    Are you taking either Japanese knotweed OR Resveratrol 200 for a total dose of 500mg? I think these are the same substance (Polygonum cuspidatum) and I'd hate for you to overdose!
     
  20. nofuture

    nofuture

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    @duncan The Ecoli i have not thought about . If that is it how will it be cured?

    @Sushi The hydrogen peroxide seems wonderful for energy as i have tried it but i need a supplement to reduce the herx. Its too much too soon.

    @Alea Ishikawa
    It might be a good idea to rule out several co-infections
    : Anaplasma/Ehrlichia, will ask
    Bartonella, will ask
    Babesia, will ask
    mycoplasmas. Last time checked and negative

    I'm guessing you're not exhibiting the signs of
    Q Fever, will ask
    Tularemia, or will ask
    Rickettsia (Rocky Mountain Spotted Fever)?

    Yes I have now ordered the red root in tincture form. I have so far tried the Korean Ginseng which seems to be doing something but it makes me light headed almost like a high feeling. What I found works a bit better is the Artemisinin every 3 hours 100mg. I have a lot of other supplements coming in . I also got some cannabis oil and it tastes like sunflower oil. I read that cannabis oil has anti microbial properties and can kill the bacteria. The only problem is getting the authentic stuff which might require a doctors prescription.

    I hate the astralagus (Polygonum cuspidatum) it makes me crash hard!

    -I have not tried the biofilm buster is it worth it? I.
    I have ordered the following:

    Raintree Cat's Claw (Uncaria tomentosa) 500mg 100 Vegetarian Capsules

    Flu Season Organic Herbal Tea, Whole Leaf, 1 oz


    Stephania & Astragalus Teapills (Fang Ji Huang Qi Wan)3341-mayway


    Herb Pharm Eleuthero Extract Supplement, Siberian Ginseng, 4 Ounce

    Japanese Knotweed Natural Extract Tincture

    Teasel Root Tincture ~ Organic ~ 2 Oz -I heard it healed someone
     

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