1. Community
  2. Infections
  3. Lyme Disease

Protocol side effects/herxing?

Posted , 2 users are following.

princematt
princematt

Hi there, I'm just over two months into the protocol (samento/banderol/burbur/pinella in various doses) and have been feeling particularly terrible in the last few weeks - headaches, brain fog, freezing hands and feet, irritiability, sound/light sensitivity, low energy.

Can anyone advise whether this is normal and/or possibly even a good sign?

I have tried various treatments since being (very belatedly) diagnosed with acute lyme after blood test in Oct 2013 and am desperate for this treatment to work. Thanks very much for your attention.

0 likes, 4 replies

4 Replies

  • Lemnia
    Lemnia princematt

    Posted

    Hi. Sorry to hear you are having it rough. I can tell you I started the protocol 5 months ago and managed to get 2 months in until I got so ill with exacerbated symptoms across the board. At that time I had not had the positive Lyme blood test done (I now have that from a lab in Germany). I am now on Artesunate (been on it just a week so far and have 3 weeks more to go) and I can say I feel as bad now add I was on the protocol. Same symptoms and exact same feeling I had on the protocol. So to answer your question I believe it has to be herxing. I don't get the sporadic few hours here and there of feeling awful, it's constant and makes me feel really ill. Are you detoxing and doing it seriously? I am, yet find very little relief. I do hope you get relief soon as it's horrible I know.
    • princematt
      princematt Lemnia

      Posted

      Thanks for the reply. Sorry to hear it's still ongoing for you and hope you can get some relief soon. I am trying to detox thoroughly while I'm on the protocol with epsom salt baths and herbal teas etc but I fear this is going to be a very long haul. I can barely get out of bed at the moment with piercing back pain, headache and foggy brain. A blood test supported diagnosis of acute lyme in October 2013 but I've not really been better since then despite 3 x courses of doxycycline, Chinese herbs and acupuncture. What worries me is that the nutritionist I'm seeing can't give me any success stories in treating chronic lyme which doesn't exactly inspire confidence either... Am I right in saying artesunate is a natural antibiotic? May I ask if this was recommended to you after you were on the (name beginning with C that the moderator edited out of my original post...) protocol for several months? And was it prescribed by a GP or private practitioner?
  • Lemnia
    Lemnia princematt

    Posted

    Hi again. You and I both, I'm in the same situation at the moment, bedbound and really having it rough. I believe it's the 'artesunate' and I'm hoping it's herxing, because the only reason I'd tolerate putting myself through this hellish experience of making my already dire symptoms worse is if I feel I'm killing the culprit that's causing it !  For the detoxing I'm doing what you are (although hot baths make me feel great when I'm in them but Oh my do I pay for it about 2 hours later. Makes me feel incredibly ill. Again, perhaps herxing?) I also take drops of Pinella & parsey and at times Burbur daily when detoxing (these are from the C protocol). I did the chinese herbs and acupuncture, they also made me feel very ill. I have come to the conclusion that either I'm highly sensitive to nearly everything I try or ....it's herxing on a major scale from all these things that make me so ill. Artesunate is 'natural' in that it comes from a plant, however don't be fooled by this, it's incredibly potent and very strong stuff (not to be confused with artemisinin). I was prescribed in by Dr. M at BS clinic in Hemel Hempstead. I have been on it just over a week now (3 weeks to go).  Although I stopped doing the C protocol after 2 months as I got just too ill to continue I wish I could have gone on to reach 6 months. I may try again and go MUCH slower on it. But for now, I'm following the guidance of DR. M at the clinic I mentioned. I have not as yet been on any antibiotics, nothing since I became ill 2.5 years ago. So the plan is for me to finish the 4 weeks of artesunate and then do 4 weeks of IV Ceftriaxone (2 hours of IV infusion every day for 4 weeks). I am hoping desperatley this will work. Having always been somebody who avoids antibiotics, prefering always to do it naturally if I can, this proposed treatment is daunting for me and I don't mind admitting I'm scared. But when desperate you'll do and try just about anything. 
    • princematt
      princematt Lemnia

      Posted

      The best of luck. I hope the IV antibx can do some good for you. I have been refused any kind of IV antibx by the NHS because they keep me telling me I'm cured (blood tests have steadily been improving) despite at least five ongoing and debilitating symptoms. It seems clear that the doxycycline I was given was not sufficient - as is borne out by a lot of research being done in Sweden and Germany. Hope the NHS can hurry up and do some more of their own research into this. Maybe the recent publicity will help (there was something on Jeremy Vine's Radio 2 show on Monday I think).

      Anyway, let's stay in touch, I hope there is some good news soon. Let me know how the IV antibx go for you. I'm going to stick with the 'C' protocol for a bit longer...

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.