The 12th Invest in ME Research Conference June, 2017, Part 2
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My new trial with Tetralysal (Lymecycline) for lyme?

Discussion in 'Lyme Disease and Co-Infections' started by Hanna, Jul 14, 2014.

  1. Hanna

    Hanna Senior Member

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    New step in my Lyme journey : I switched yesterday from mynocycline to a new tetracycline after my doc's supervision, this one is called Tetralysal in Europe (Lymecycline).

    This drug brought me the baddiest Herx I've had so far... With half a doze only...
    I thought the antimalarial RIAMET showed me what an Herx could be, I had an additionnal lesson.

    Last night I experimented :
    - repetitive dyspnea from 23.00 to 3.00
    - heartburn so bad I could hardly move my diaphragme + belching (never have)
    - temperature fell down and I was frozen
    - vivid nightmares with moments of total confusion, didn't know if I was awake or not. Though I tried to interrupt them several times by waking-up, moving to an other room etc. they went back to square 1 as soon as I went back to sleep.
    - rushing brain with "hearing" unwanted mantra "cat's claw without TOA" in a loop, driving me crazy
    - bad nocturia from 23.00 to 5.00 (once every hour) (the same day, I just wrote on PR that this awful symptom went away with minocycline)
    - increased high pitched tinnitus
    - feeling poisoned
    - extra systoles

    I woke-up this morning, after two hours of uninterrupted sleep, feeling like after an hang-over.
    I was scared to renew the experiment today, as brain symptoms were so frightening .
    Surfing on a French Lyme forum (where some folks were taking tetralysal), I hoped to have some indication. And in the mid-time, I made a coffe enema to see if it could bring some improvement.

    The result was better that I imagined,and I could be functionnal in some way after that. Even, feeling more energetic than usual... Returning to the computer, I was answered that what I went through last night was a typical post-tetralysal Herx, and I would have to work more on the detox. (And don't hesitate to stop for two days if this was hardly bearable and resume ABX after pause).

    I thought I knew what Herxing may be. I didn't. And I am quite sure those nasty bugs keep some additionnal surprises for their host :( .

    Why have 2 tetracycline (first, Minocycline, then Tetralysal) caused so diffrent reactions?
    Mino was a "picnic".
    Perhaps I have some clue here :

    1. I took mino alone, it was like an "introduction". It is a bacteriostactic, and in quantitiy has bactericid action. It seems it didn't reach this point.

    2. Right after the 6 weeks of mino, I took the RIAMET for Babesia (high doses pulsed on 4 days). One of the two ingredients stays inside the body from 2 (control) to 6 days (Bab. people) after stopping the drug.

    3 When I began Tetralysal, I was on day 3 of ceasing the riamet, so there is chance the antimalarial was still in the body, and coupled with the new tetracycline, it made a powerful cocktail (like anti protozoaire+ tetracycline). And the bactericid action was powerful, drawing some hard herx.
     
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  2. Valentijn

    Valentijn Senior Member

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    @Hanna - Are you drinking a ton of water? I'm supposed to get at least 2 liters per day, to help dilute the endotoxins generated by Lyme spirochetes when they die off. Though even with doing that, I had some pretty rough days.
     
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  3. Hanna

    Hanna Senior Member

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    @Valentijn - I am drinking more than 2 liters but I think I am still not getting enough fluids. Here, the weather is particurlarly hot and I should increase to a minimum of 3 liters ... and measure it in order to get it right.

    You're right, helping the endotoxins finding their way out is a must. Perhaps some targeted herbal teas would help to.
    In France, from the French Lyme forums I see many patients helped by herbals of all kinds : teas, essential oils etc... There is a natural remedy who is often quoted as efficient for detox : it is called "detox fleurange" (liquid to drink).
    If I was still in the EU I would order it from the net. But living in Jerusalem makes the thing more complicated...
     
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  4. Thinktank

    Thinktank Senior Member

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    @Hanna, are you still using tetralysal?
    I've to use it for the next 3 months in combination with flagyl (metronidazol) and fasigyn (tinidazol).
     
  5. Lala

    Lala Senior Member

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    Interesting, who did you prescribe tetralysal, guys? Or are you taking it on your own? I was pretty smashed by minocycline and never heard about lymecycline for lyme..
     
  6. Hanna

    Hanna Senior Member

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    @Thinktank, yes I am still on Tétralysal. Along with Plaquenil (to maximlise ABX penetration), it is the corner stone of my LLMD's treatment. And he loves to combine it with one more stuff, in rotation (cefuroxime, azythromycine, tinidazole).

    At the moment I am experimenting the combo Tétralysal + Plaquénil + Tinidazole. And so far so good...
    I try to introduce new things / new combo one at a time, in order to identify an eventual culprit if things are going wrong.
    I began with 500 mg tinidazole "solo", then the day after took 1000 mg, then introduce the combo tetra+plaq.

    Tinidazole and metronidazole are doing quite the same thing, donùt they? I don't understand why you would take them both with the Tétralysal. Or do you intend to rotate them?
    Tinidazole has been reported to be slightly better tolerated than metro. And that was clearly the case for me. Good luck with your treatment :) !

    @Lala, I hadn't heard about the Tetralysal either, untill I began to be treated by my LLMD (from Belgium). This stuff is produced in France by Galderma, so perhaps there is greater chance that it will be prescribed by european docs.
    My doc said he prefers me to take the tetralysal but I don't know the reason why.
     
    Last edited: Dec 15, 2014
  7. Thinktank

    Thinktank Senior Member

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    @Hanna, yes i have to rotate metronidazole and tinidazole each 10 days.
    I guess we have the same LLMD :)

    Edit: Anxiety and panic is through the roof and it's been only the first day on 2 X 300mg tetralysal and 1 X 500mg metronidazol!
    It's 00:15 now and i'm unable to sleep because my mind is racing and my heart is pounding, i was also feeling a bit depressed today which is unusual for me. I've never experienced such a violent reaction to abx before, is it the flagyl or tetralysal? I can't do this for 3 months unless i completely sedate myself with a benzodiazepine.
     
    Last edited: Dec 15, 2014
  8. Hanna

    Hanna Senior Member

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    @Thinktank, perhaps it could help you to stop everything for a couple of days and slowly reintroduce the stuff : metro and tetra all at once are tough. I choose to give my body a chance to acclimate himself (though this night was awful with tachycardia, very low temperature, dyspnea etc... which is not usual).
    postpone
    I would begin to test the metro first at the minimum dose and take the time to reach the dose your doc prescribed. And only then, introduce the Tetra, also with the same precaution. Perhaps it will help you...

    My initial reaction to both meds was hard. If you want to identify the culprit, you have to postpone the introduction of one of them.
    And don't make any projection for the future. One day at a time ! it is crucial!
    At the beginning, I didn't believe I would be able to tolerate the Tetra. And 5 months later, I am still with it.
     
  9. justy

    justy Donate Advocate Demonstrate

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    Same doctor here has prescribed tetralysal - but I am not trying any abx right now after bad reactions to many. Metronidazole in my experience is brutal. I haven't been prescribed it, but many on Lyme forums say it is very hard and is usually only pulsed. I was given it a few years ago for different problem by local GP and it was the most brutal thing I have ever taken.

    I suggest going very slowly with all abx - there is no need to suffer so badly. You can start with lower dose and work up. Personally I would never introduce two at once either.

    Good luck all - I am seeing toxicologist on Friday to discuss possible allergic reactions to drugs - everything I take now abx or not is making me itch, that included PPI, herbs, some abx. steroids made me psychotic on small dose everything is a big problem for me so I don't have any treatment so far...
     
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  10. Daffodil

    Daffodil Senior Member

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    hi all. i know this thread is old but i have just been prescribed tetralysal and have no idea how to get it...it looks like its available only in europe and i am in canada.

    anyone know for sure that it is not available in the USA?

    in canada, i am not allowed to order prescription medicine in the mail from another country so i usually go to buffalo and pick up what i need...but this time, looks like i am in trouble.
     
  11. Hanna

    Hanna Senior Member

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    @Daffodil , sorry to read that ! :(
    I know what a mess it is with meds not allowed for importation !
     
  12. Daffodil

    Daffodil Senior Member

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    @Hanna thanks. yes i checked every UK/EU pharmacy online and they cannot send it to me or even to the USA, where I can pick it up. The only way is if I were european and visiting the USA...then customs would release it.

    I did find 1 or 2 "rogue" pharmacies without that official pharmacy sign where it seems I could order it...but It is probably better not to go that route.

    I do have a friend coming from the UK to Canada soon, but I sure don't want to get them into trouble if they get stopped by customs.....you arent allowed to bring meds in for someone else and especially if the meds arent approved here.

    I asked for a substitute but in the past, there haven't been for the meds my doc wanted me to take.

    blah
     
  13. Effi

    Effi Senior Member

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    hi @Daffodil What if your friend explained this to his/her local doctor and let the doctor write them a prescription on their name? (It's not by the book but it might get him through customs?)
     
  14. Daffodil

    Daffodil Senior Member

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    hi effi....the thing is, i just dont know this person well enough to ask him to do something like that. he is a boyfriend of a friend....i am sure he wouldnt do it anyway...he is a professor lol....but if he did and he got into some kind of trouble, i would just die.

    also, one has to know a doctor pretty well - like he has to be a close friend or relative - for him/her to do that, i think.

    the drug is also called lymecycline and its not even used for lyme..its an acne / rosacea drug lol weird
     
  15. Effi

    Effi Senior Member

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    @Daffodil yeah I understand, it's kinda tricky to ask someone you don't really know... I always find going through customs (to get into the US) so scary! There's so much stuff that is forbidden and if they catch you (even without malicious intent), you're in big trouble. I hope you find a solution!
     
  16. Daffodil

    Daffodil Senior Member

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    Thanks Effi. If I knew someone coming in from india it might be doable...but i don't want to just take any old thing and swallow it LOL
     
    Effi likes this.
  17. Effi

    Effi Senior Member

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    Valentijn likes this.
  18. Daffodil

    Daffodil Senior Member

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    thanks Effi. I actually did come across that one but it did not have those symbols that indicate they are legit. also, even if they did mail it to canada or the USA, it would get stopped at customs.

    i thought about trying to apply for a special exemption through health canada to import the drug, but for lyme, they would never let me have it. if i had a very bad case of the illness it is used for, and my doc here said it was necessary, it might be different.

    also, maybe if i had used it before and my CFS improved a lot and i could work or something, i might have an argument...but they are really awful here and just turn everyone down for everything.

    xoxox
     
  19. Effi

    Effi Senior Member

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    @Daffodil ugh sounds rough :( And I totally agree, if you buy it online you really have to make sure it's a legit source. Just makes me mad that we live in so called high tech countries and we can't even get the proper care we need... I hope you find a way to get it!
     
  20. Daffodil

    Daffodil Senior Member

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    @Effi thanks:) i was actually debating whether to ask the person coming in from england but he doesnt even bring luggage believe it or not lol just a nap sack on the plane
     

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