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In Belgium to see Dr de Meirleir

Discussion in 'ME/CFS Doctors' started by Valentijn, Oct 28, 2013.

  1. Valentijn

    Valentijn Activity Level: 3

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    There's a discussion and a paper on it somewhere ... off the top of my head, false negative rate is around 10% and false positive rate is around 3%.
    Sasha likes this.
  2. Daffodil

    Daffodil Senior Member

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    Well, Infectolab gets a lot of business now from the CFS community...so who knows?? I know Dr. DeMeirleir is very careful about the labs he uses and is meticulous is verifying their accuracy...but I don't think anyone else is the world is doing the LTT ELISPOT Borrelia test, that I know of. If there is another lab, I would love to send my blood there to confirm.
    Last edited: Aug 14, 2014
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  3. Daffodil

    Daffodil Senior Member

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    See I would personally discount Lyme as nothing more than opportunistic if it didn't explain, at least in part, the contagious aspect of CFS. Why all the clusters? Why all the families with every member sick??? If it is strictly autoimmune, could that even happen?

    Even if it is just that we have a genetic issue that inhibits us from putting EBV into full latency as Lerner and others have suggested, then surely it couldn't be that an entire cluster of people in a particular area would have the same genetic problem?!
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  4. Valentijn

    Valentijn Activity Level: 3

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    Week two of the azithromycin is done :woot:

    And I am so bleeping happy to have that thing out of my hand. The right hand is always awful for me, since I use it so much on my laptop mouse, and it's constantly getting irritated when I move my hand at all.

    The azithromycin stung a bit going in, but felt better near the end when it had warmed up. Still, that stuff just seems to be a little irritating while it's going in.

    I seem to be getting the Herxheimer reaction again, usually hitting me in the evening after each infusion. So a good sign that it's doing its job, and that it's necessary to kill off the little buggers in their cyst form or whatever. It's the same reaction I got with the ceftriaxone (fever and moderate nausea), though the timing is different. This is hitting faster and harder after each infusion, but then I'm usually somewhat functional again by morning.

    My sleeping hasn't been great ... I've been turning over a lot, and wake up with the damned cannula site aching and stinging. Probably more due to the placement of the tape and the hard little "wings" outside the cannula which hold it in place. At KDM's clinic they put a thin layer of cotton padding under that, which I think makes a big difference - I'll ask the nurse to do that on Tuesday, if possible.

    On the subject of sleeping, I finally tested my heart rate and oxygen saturation for a while in various positions, and I seem to be quite normal now. My oxygen saturation used to drop a lot if I tried to lie down on my back, stomach, or right side, resulting in a racing heart rate. But that seems to have stopped happening during the ceftriaxone treatment, and it doesn't look like it's coming back any time soon :angel:
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  5. Valentijn

    Valentijn Activity Level: 3

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    Week three of azithromycin has begun! The nurse arrived half an hour early, so I wasn't really ready yet, and still had my stuff from my 4ME and B12 injections on the coffee table :p I ran my hands under warm water for a bit while she figured out where stuff is. Yes, another new nurse! Maybe they try to avoid me after getting a taste of how badly my veins misbehave :D

    We have some different stuff from the pharmacy now, but it was ordered in close consultation with the nurses, so it looks like most of it works. Instead of a line with a double IV hookup, there's an IV with a single hookup + an extension hookup near the top which can have a 2nd short line with IV attached to it. And similar for the little line which stays attached to my hand - it looks like the parts are separate but can easily be attached the necessary extension to the cannula.

    She forgot to add an extension (or even something with a plug to stop blood escaping) to the line before starting it, so we had to stop the infusion and I pressed down hard on my vein while the nurse unscrewed the IV line, added the extension to the IV line, and attached it to my hand. No blood leaked (or sprayed) out in the process :thumbsup:

    Then everything went very fast ... the dripping went at a fast rate and didn't feel cold or hurt at all, even though it was pretty fresh out of the refrigerator. It only took about an hour, maybe 75 minutes at most, instead of the expected 2-3 hours. I also didn't have any swelling at all in my hand this time - I always do have a small amount, just from having the cannula in my hand or wrist I think. The azithromycin itched a little while going in, but much less than last week, and didn't sting or ache at all.

    I was feeling sickish and feverish until last night, but have been doing a lot better today. And the current infusion hasn't knocked me down yet, so fingers crossed.
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  6. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I have a superstition about saying that an unpleasant thing hasn't happened yet, as all too often the thing happens soon after I say it!

    (I've tried it with pleasant things but it hasn't worked!)

    Here's hoping my jinx doesn't affect you.:)
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  7. Thinktank

    Thinktank Senior Member

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    Good to hear you're still doing fine. Has KDM discussed treatment after the IV abx with you?

    I've recently seen KDM and we discussed the use of IV ceftriaxone for a longer period of time - like they often do in the USA. He's ok with it and prescribed me a 12-weeks IV ceftriaxone course, 2gr. 5days/week and plaquenil as a cyst buster. After that go back for new testing and continue with another longterm round. I also got a green light to start samento and cumanda, although i prefer to also add banderol like in the Cowden protocol.
    The current medications doxycycline and clarithromycin have not done very much. I'm eager to start the IV ceftriaxone again, it's the only thing that has helped lower my neuro-inflammation and improve my cognitive functions.
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  8. Valentijn

    Valentijn Activity Level: 3

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    Nah, the plan is to retest and see how things are doing.
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  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    The protocol he gave me does include Banderol. It starts with Samento and Cumanda and then after 2 or 3 months I was told to start rotating Samento and Banderol--12 days Samento, 2 days with only Cumanda, then 10 days with Banderol, then again a round of Samento.

    I had trouble with Samento at first until I added in more herbals to help detox (I was taking Burbur, added Pinella, Parsley and Smilax). Then I also realized that I had to start with however low a dose I could tolerate in order to build up to a therapeutic dose. For me that was 1/8th drop!

    Now I am able to tolerate 6 drops of Banderol and 14 drops of Samento--in their cycles.

    I am pleased with the herbals as an adjunct to the ABX.

    Sushi
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  10. Thinktank

    Thinktank Senior Member

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    He gave me the same schedule, to start with samento + cumanda and change the samento for banderol after 12 weeks.

    I've all the first aid stuff for herx reactions lined up so i'm ready to go after the weekend! Or maybe i just start with the detox tinctures + smilax in the weekend as a pre-cleanse for the samento/cumanda protocol.

    How have the herbals benefited you most? Any neurological / cognitive improvement (if you had any problems in that area)?
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I wish I had just started with detox tinctures and smilax. I had to stop and do that for about 5 days before I could get anywhere raising my dose of Samento.

    As far as improvements, there definitely are some but since I am also taking rifampin, I can't be sure what is doing what. The main thing I am noticing is that my "cardiac weirdness" has improved a lot. Hard to describe cardiac weirdness, but if you have it, you probably have a good idea what I mean!

    Sushi
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  12. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I think I do. Pounding heart on change of position, for example? (I get it when I lie down, especially on my left side). Large and rapid swings in blood pressure, and variation from day to day, week to week? That sort of thing?
    Sushi likes this.
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Yep! That sort of thing!
    Sushi
  14. bertiedog

    bertiedog Senior Member

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    I have been experiencing this recently 4 weeks into herbal treatment for Lyme but also on Low Dose Naltrexone. Somehow these have affected my tolerance of my thyroid meds so I put all of the above down to this but maybe there is more to it and its an uncomfortable part of herxing. Have been doing 2 caps x 3 or Cats Claw and Andro plus Smilax and a herbal tincture from a herbalist but I have now stopped that because I don't like the fact that are lots of herbs in there and feel like some of them might not be right for me. I want to change to the Cowden protocol next week because I think it will be easier to see what is affecting me. Whilst all this has been going on my adrenals have crashed despite being on steroids so I am slowly having to rebuild the thyroid stuff.

    As others say this is a marathon and not a sprint!

    Pam
    Last edited: Aug 24, 2014
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  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Have you checked your thyroid levels recently? I discovered that I had quickly gone from hypothyroid to hyperthyroid (actually normal thyroid but I was taking a low dose of Armour which made me hyperthyroid) in quite a short time. It took a trip to the ER to realize that my symptoms were from being unknowingly hyperthyroid.

    Sushi
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  16. Gingergrrl

    Gingergrrl Senior Member

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    I briefly tried LDN (and it did not work out for me) but in the beginning my endo gave me a standing order to check my thyroid as frequently as every seven days b/c he said that LDN can make you hyperthyroid like what @Sushi said. Since I didn't end up doing LDN, I check my thyroid every other month as usual.
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  17. bertiedog

    bertiedog Senior Member

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    Yes, my need for thyroid meds after being on 1 mg LDN for 9 weeks has dropped from 2 grains plus 25 thyroxine to just 6.2 T3 (cannot tolerate Nature-Thyroid anymore) plus the 25 mcg thyroxine. Also, unbelievably for me my need for the steroid that I have been on for 12 years has dropped from 6.5 mg Prednisolone to 2.5 mg Pred plus 4 mg hydrocortisone in divided doses.

    I never believed this could happen and cannot quite understand how it does this. I should also add that for the past months I have been on Andrographis (up to 3 x 3) and Cats Claw (2 x 3) and these could also be playing a part.

    Pam
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  18. bertiedog

    bertiedog Senior Member

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    Well things are still changing by the day. Today on waking around 5.45 am I didn't really know what to take so took the same dose of T3 as yesterday (6.2) and the 25 thyroxine but I started to get a reaction about an hour later and I know this means my body didn't like it or want it so tomorrow its going to just be the 0.25 mcg thyroxine. Who knows very shortly I might even drop that!

    Also only took 1 mg Pred and 2.5 hydrocortisone and I think that is about right for the time being. I am going to be going out today shopping so will be very aware I might need a bit more h/c to support my body.

    I am writing notes how exactly LDN works (have got a book on LDN on my Kindle) and it talks about how the immune system is constantly interacting with the neuro endocine system. It states "These bi-directional interactions influence antibody and cytokine responses, cytolytic activity, lymphocytes proliferation, tissue localisation of lymphocytes, hypothalamic-pituitary hormone secretion and neural signal transmission. Best illustrated in the body's response to stress.

    Stress can either suppress or enhance immune responses. " (The promise of Low Dose Naltrexone Therapy by Elaine Moore et al)

    So it would seems that in my case there are several factors that have caused my HPA axis to be whacked. Firstly I was mercury poisoned, this started to happen from age 15 when I reacted badly to the TB jab which would have used thimerasol which is 50% mercury. Following on from that I had lots of amalgams done around the age of 18. Around this time I would get severe nose bleeds and migraines started too. The mercury issue would have continued to get worse as each amalgam was placed, I ended up with 14 amalgams and one gold crown that had amalgam underneath. These were all removed over 10 months in 2002/3 and I chelated using Andy Cutlers protocol but know that it took 5 years for my lymphocytes to stop overreacting to mercury.

    In 1975 after my 3 rd pregnancy I lost 4 pints of blood and they only put 2 back which would have caused a big shock to the pituitary.

    In 1996 I think I got bitten giving me Lyme disease and possibly Ehrlichia too. Following on from that I picked up Campylabactor poisoning and other nasty infections. It was during this time my adrenals took a real nose dive and the thyroid too so in my case it has all be autoimmune and the LDN has gone a long way to sorting this out with the probably help of Cats Claw.

    Perhaps I should do a separate post to let others know how we can calm everything down through LDN, surely a far superior choice than Rutuximab? Sorry I didn't mean to derail this thread.

    Pam
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  19. Helen

    Helen Senior Member

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    Hi Pam,
    Yes, I think that would be a good idea. Thanks for sharing.

    Helen
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  20. Valentijn

    Valentijn Activity Level: 3

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    So first I'll recap last week. Basically everything went fine, though the azithromycin is definitely a bit irritating to the veins while it's going in. It seems to be less problematic on Tuesday, and rather annoying by Thursday :p

    I'm also still having intermittent fevers and such, lasting pretty much all week now. And feeling quite cruddy. I also might be getting normal-sick yesterday and today ... more worn down than usual, and my fiance has co-workers calling in sick and is coming down with a gravelly voice himself. Kinda sexy, but usually not a good sign ... maybe I'll ask him to do his Sean Connery impersonation when he gets home :D

    So of course my blood pressure is being more of a bastard than usual. I feel a bit icky just sitting up, my lymph nodes ache more than usual, and even my throat is aching a bit now. Usually the BP is not this much of a problem, but the nurse gave up on getting a cannula in after three tries (and a great deal of subcutaneous exploration during each try). I'd even been keeping my hand wrapped up in an electric throw to keep the naughty veins warm!

    I was also having a lot of trouble understanding the nurse, though I was speaking Dutch quite well, which was generally confusing the hell out of her. So I managed to explain my blood pressure problems and ME itself making it very difficult for me to think sometimes. She seemed to understand that pretty well then, and was less annoyed :rolleyes:

    Anyhow, a different nurse will be coming by this evening, probably not too late since the official infusion time is 3 hours. And hopefully I get a nurse who is experienced with Naughty Veins of Doom.
    Last edited: Aug 26, 2014
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