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About to start Lyme treatment

Discussion in 'Lyme Disease and Co-Infections' started by Vitalic, Dec 8, 2014.

  1. Vitalic

    Vitalic Senior Member

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    Hey all. So I posted recently about seeing KDM and have since got results/treatment plan back. I have a few questions but generally I'd really appreciate any advice/comments/warnings on this proposed treatment plan. I know a couple of other people here seeing KDM so would be interested to hear your progress as well.

    The conclusion based on my lab work was as follows:
    My IL-8 was at 7353 pg/mL (reference 0-15) which seems a little high to me. It's great to get some form of diagnosis though, as my previous thread mentioned Breakspear failed to diagnose Lyme three years ago after a positive MELISA (albeit with negative serology). I find it almost surreal that he predicted Mycoplasma after I mentioned jaw problems and it showed up on PCR.

    The treatment plan:
    Questions:
    1. 4ME - worth taking? I've never heard of it until now and wonder how strong the evidence is for it (given it's pretty expensive)
    2. DHEA - sounds kind of sketchy according to here, what is the point of this?
    3. How important is it to have I.M vs sublingual B12, I've heard there is evidence showing that the difference is negligible but not too sure
    4. Oral antibiotics, would be interested to know the best way to source these, how have people based in the UK gone about acquiring them
    Also finally, although there are anti-inflammatory supplements there seems to be nothing to help with the inevitable die off/herx reactions/detox etc. I assume this is something I need to organise myself but would be good to know what most people's approach has been for this.

    I believe some patients are also using herbal antibiotics, is this something that can be done simultaneously or is it like a backup if the traditional antibiotics fail?

    Many thanks
     
    Last edited: Dec 8, 2014
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  2. justy

    justy Senior Member

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    Hi Vitalic, sorry I don't have the energy for much of a reply, but just wanted to say that KDM should provide you with prescriptions for the antibiotics and you can fill these in the UK at any pharmacy, so long as the clinic writes the correct info on them. I have had two scripts go back because they didn't include how many pills were required! But European prescriptions are legal in the UK. It took me a while to get this right, but now its ok. Although I cant tolerate any of the abx he has prescribed so far, so I have a drawer full of medication I have paid for and cant take.

    Your treatment programme looks very comprehensive - much more so than mine! He told me DHEA (which im deficient in) is for switching the TH1/TH2 response or something to do with that. You may want to start with a lower dose than 20mg - although I think you are a man, so may be ok. I cant tolerate even 2.5mg.

    Good luck with it all - let us know how you get on!
     
  3. Ema

    Ema Senior Member

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    Justy is right...further DHEA supports the entire hormonal cascade and promotes a sense of well being when it is replaced from a deficient state. I consider it a very important part of my treatment protocol for Lyme and endocrine deficiencies.

    http://www.drkaslow.com/html/immune_restoration.html
     
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  4. Ema

    Ema Senior Member

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    I think 4ME is definitely worth taking. It was the first antiviral/immune modulator that I used and I think it was quite helpful without provoking overly difficult herxheimer reactions. It can also be good for the liver, I believe, which is always a consideration when on an intensive antibiotic protocol.

    @Hip provided me recently with the following regarding IM vs transmucosal B12...

    So from this, we have:

    B12 intramuscular injections provide 50% bioavailability.

    B12 nasal administration provides 2 to 5% bioavailability.

    I think sublingual would be closer to nasal administration bioavailability rates so I think the combination may be advisable, at least to start to saturate the liver and tissues.

    Vitamin C will help with the die-off. You might also consider Epsom salt baths. Also, broken cell wall chlorella can be helpful and is also a TH1 shifter.

    Most LLMDs in the US recommend a mixture of antibiotics designed to hit different forms of the bacteria all at once. That's the only real difference I see in the KDM protocol vs what people seem to do around here for the most part.

    It does seem like he is not using an antibiotic known to get at the cystic form of the bacteria. That might be a question you might want to ask. Commonly used cyst busters are Flagyl or Tindamax. Grapefruit seed extract is also a good option and is sold as a supplement. It may also help fight against candida which is always a concern with antibiotic protocols.

    I would also make sure to take a good probiotic as far away from the antibiotics as possible.

    Good luck!
     
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  5. Vitalic

    Vitalic Senior Member

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    Thanks both, that information is super helpful.

    @justy I'm not sure how your plan compares but I wrote it down in a "dumbed down" format so I could get a feel for what I'm going to be taking each day and how much it's going to cost. The original format was a little tricky to decipher but they at least provided an order form for most of the supplements, the experience with KDM so far has not been as bad as I feared (in terms of the logistical side of things).
     
    Last edited: Dec 8, 2014
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  6. Vitalic

    Vitalic Senior Member

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    Okay, so I.M is definitely optimal then, shame because they could do it here but won't because my B12 levels were shown to be in normal range, I believe intramuscular B12 is pretty expensive. :nervous:

    It's interesting you mention chlorella because I tried some of it a while back and had probably the worst reaction I've had to any substance (occurred on two separate occasions the second of which it was taken in isolation), which is strange if it's supposed to do the opposite.

    Great point about the Flagyl/Tindamax would have probably overlooked that. Probiotics/GSE we already have so will definitely include those in the protocol.
     
  7. Hanna

    Hanna Senior Member

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    I am also concerned by the lack of a med that takes care of the cysts, and by the fact that it is best used along with other ABX that target the other forms of the bug (spirochete,L-form,intracellular).

    One other thing is to invest in detox. Herxing may be hard, and the more you open the detox ways, the better.

    Herbals like Burbur, Parsley, Pinella etc (from Nutramedix) are often used. I really found them helpful. But the major help appeared to be Liposomal Glutathion (I have just tried LivOn so far and I am satisfied with it). Years, I didn't want to test it, after reading some threads on PR. It seems that though I had been taking methyl supplementation, it didn't do the trick and my body was not able to produce its own glutathion.
    My LLMD insisted on me to try it, and I decided to follow his advice. I do not regret. It seems for me the best support during this tough and long ABX regimen.

    I am just 5 months into the protocole (4 months of multi antibiotherapy), but I can say, that it is the first time in 16 years of illness, that I begin to see improvement, real ones, measurable.
     
  8. Vitalic

    Vitalic Senior Member

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    @Hanna Thanks, will definitely ask about that. It does make me wonder given that KDM has arrived to the position of treating Lyme relatively late, is he on top of the very latest research and methodologies.

    Thanks for the tips, aside from the Nutramedix ones you mentioned what about Samento/Cumanda (that I have seen mentioned here a lot), is that something people take later on? I'd rather go for the nuclear option from day one whatever the reactions might be, I've had enough of illness now. Great you are finally seeing some objective improvements, it must be a weird feeling after so long.
     
  9. Valentijn

    Valentijn The Diabolic Logic

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    HydroxoB12 injections cost me about 5 euros each in the Netherlands, though I had to pay a little extra at the beginning so my pharmacy could set things up to import it from Belgium. For the dosage, it's a helluva lot cheaper than buying high dose sublingual B12 over the counter, and is very effective in reducing pain for me.

    4ME does seem to be helpful for me, and is basically the same as Nexavir/Hepapressin/Kutapressin, if you want to look up those to get more data. But that one is a bit expensive, at about 270 euros per month.

    I don't take the Choline-DHA or liposomal C, since I didn't tolerate those.

    I haven't used anything to deal with the Herxheimer reaction, aside from drinking a lot of water. For me it's basically just fevers and hypotension. It can be a good idea to have ice packs on hand - at times the heat from the fevers was really unbearable, though that was probably aggravated by summer temperatures.

    How do you plan to do the IV antibiotics? It can be very tricky to arrange in the UK, I think.
     
  10. Vitalic

    Vitalic Senior Member

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    Ah that makes sense regarding 4ME.

    How do you get the imported HydroxoB12 administered?

    Planning to start the IV in Belgium for 1 week and then stay in Malta for the rest of the duration, where the health service is much more accommodating, I believe we have that mostly lined up which is one thing less to worry about (I say we because both myself and my sister are in the same situation).
     
  11. Valentijn

    Valentijn The Diabolic Logic

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    I inject it myself. The nurses at my GP's office showed me how to do it twice, and then I was good to go. I get filtered green drawing needles (needed to remove any glass fragments), intramuscular blue needles (for injecting), and 2.5mL syringes from the pharmacy.
     
  12. Daffodil

    Daffodil Senior Member

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    4ME didnt work for me and indeed was very expensive. the customer service was poor as well. if KDM suggests it, i would give it a try, though

    I wouldn't do herbals with the regular antibiotics; i would just do what KDM says. he might add herbals later.

    injectable b12 is important even if you don't think it makes a difference..i think it helps the liver or something.

    I don't think that KDM arrived late at treating lyme..I think it is more that he is now convinced lyme may be causing or perpetuating CFS. it has taken a while to arrive at this conclusion and the LTT ELISPOT test has helped with that, I believe. most of his patients are coming up positive.

    i have been sick for 21 yrs, and felt like i was close to death. at one point, i could not get out of bed at all other than to use the bathroom, and then had to nap. i was having trouble breathing too, and had started looking into hospice care.

    after trying things like GcMAF and HIV meds, I gained about 10% improvement. With KDM and his antibiotic protocol, I have worked my way up to maybe 30% improvement. Not huge, I know, but I can now take care of myself on most days.

    xoxo
     
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  13. Vitalic

    Vitalic Senior Member

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    @Daffodil Thanks for the advice. I think it's just the absence of a cyst buster which raises question marks, I would have thought this is a given in a case of late-stage Lyme, especially since I have had various short courses of antibiotics over the years for dental infections which may have driven the systemic infections further underground so to speak, I guess it's possible that he either doesn't feel it's necessary or hasn't seen enough evidence to believe it is necessary. Taken in context your degree of improvement has to be a good sign, does KDM expect you to see further progress?
     
  14. Daffodil

    Daffodil Senior Member

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    Hi Vitalic. Due to my being convinced CFS was a viral infection (and i still have my suspicions), i spent so many years researching and pursuing those treatments.Then when I was told it might be Lyme, I was just burnt out (and had mush brain and was broke!) and didn't research at all - just decided to do what the doc says..so I don't know anything about the cyst busting part.

    KDM once implied that it would be 4 years before I made significant improvements..I think I am at the 2 3/4 year mark right now. I am over 40 and have had the disease so long, I maybe should not expect huge improvements, but I still do hope. I haven't come out and asked how much improvement he expects because I am afraid of the answer lol
     
  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Others have told me that he gave them cyst busters at a certain stage in treatment. He seems to treat in stages.

    4ME (Nexavir) is very helpful for me. I am one of the lucky ones whose insurance pays much of it. You usually have to take it for a couple of months to notice the benefits.

    There are herbals that can help with detox--either directly or indirectly. Smilax (sarasparilla) does seem to help me. He often gives herbal antimicrobials at a later stage of treatment.

    Best wishes,
    Sushi
     
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  16. Wayne

    Wayne Senior Member

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    I recently wildcrafted some teasel root, and was reading up on it last night to learn specifics on how to make a teasel root tincture. I ran across the following--a concept I had never run across before. Here's a link to the full article: -- Teasel: Honoring the Bones of Our Ancestors

    "According to naturalmoxie.com, Teasel has a unique ability to get the spirochetes where they “hide out” in the joints and drive them into the blood stream, where other medicines (be they herbal or pharmaceutical) can then eradicate them."
     
    Last edited: Dec 8, 2014
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  17. Vitalic

    Vitalic Senior Member

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    Well that's somewhat reassuring to know. I'm getting a better sense of how everything ties together.

    I guess it's not like he would "forget" something as important as that (cyst buster). Although it does appear the prescription they gave me is missing the Doxycyline/Ciprofloxacin.

    Yes I can imagine. Unfortunately there may be an element of irreversible damage in every sufferer of these long-term chronic disorders and it stands to reason that the longer you have been ill the higher the degree of damage there has potentially been, but I do feel like even in the relatively short time since I became ill in 2009 there has been quite an evolution in the way people are being treated, the research being done, and I guess as a consequence the number of people seeing improvements, however partial they may be. There was a time around 2011 where I was pretty sure what I had was ME/CFS and was being subjected to Graded Exercise Therapy (I think it was also at the time the XMRV hypothesis fell apart), where I had pretty much lost all hope of even making a partial recovery.
     
  18. Hanna

    Hanna Senior Member

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    I do take Samento and Cumanda along with my ABX, alternating the both, the first one 12 days on, then 36 hours off, then 12 days on for the second one, then 36 hours off etc.
    When I introduce a new med, sometimes I stop everything else,just to be sure that if there is some reaction, it will be linked to the "newcomer".
    I don't know what to think about Samento/Cumanda/Banderol. I began to take them early in my treatment, even before introducing the ABX, but I didn't give them enough time to work on their own to test if I see some improvement or not.

    When my ELISA returned positive for the bugs, after having seen the "under your skin 1" (and I was so shocked to see some parallels with my situation), I was determined to do the maximum I could reach from my country : herbals, antibiotics and bicom (a sort of coil machine).

    But even with this very strong desire to kill the bugs, keep the eyes super-opened to any weird reaction from the meds you'll take.
    For example, I introduced Bactrim on sunday. Stopped everything two days before. Hubby who is a dermatologist wasn't quiet about my taking the drug, as it is known for its rare but very serious skin allergies. Fours hours after the first dose, I began to developpe conjunctivitis in both eyes, tinglingin lips, dryness of lips and eyes. If I hadn't stopped the med at this point, there is "chance" I could be no in hospital with a very bad reaction.

    For the moment I have quit everything for a couple of days and perhaps a bit more, as my body needs to rest and avoid any additionnal trigger. But I intend to return to fight as soon as possible. I am convinced that this is the right way for me. Hope you'll see also improvement soon!

    One more thing : my doc didn't ask me to take the cyst buster tinidazole/flagyl right away. I took other meds before during 4 months, building some tolerance perhaps, or at least avoiding the maxi Herx it would have caused earlier otherwise.
     
    Last edited: Dec 9, 2014
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  19. Daffodil

    Daffodil Senior Member

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    hi Hannah. are you better now on that protocol? is the coil machine called Rife?

    Thank you
    Sue
     
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  20. Hanna

    Hanna Senior Member

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    Sue, I am still dealing with an overtriggered immune system (MCS exploded, skin rash etc) after the Bactrim allergy, so I put aside my protocol. Otherwise, I think it works.

    I have no Rife, but a "MD wave" (works with the same waves). That's a portable device that I use for general support at home. The rest, I am doing with a trained bicom naturopath (working on Lyme and Co, adjusting myself to ABX... didn't work for bactrim though).
    I am very sensitive to meds and chemicals in general, and so far, I went through my 5.5 months of ABX without major problems, if I put aside two allergies : Amoxycillin and Bactrim.
    I don't have any proof that the "wave thing" is helping me tolerate all the stuff I am taking, but I tend to think so. Nothing very scientific though.
     
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