Jean

Here you can introduce yourself and give an account of your medical history, visits to physicians, results of treatments, etc.
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Sciucca1
Posts: 13
Joined: Fri 4 Sep 2015 14:21

Jean

Post by Sciucca1 » Sun 13 Sep 2015 12:22

Hi to all,

I'm new on this forum. First, I would like to apologize for my english writting, not as good as expected. So please, don't consider mistakes or typos.
In few words, I had a tick bite on a summer, 1999, in south of France. I was aware of the Lyme disease, so I ran to my MD to have some antibiotics. He (he is now a former friend of mine), said that, it was not useful, but if I noticed "strange" symptoms, then I should go to an MD. A sentence and a bad opinion have ruined my life. Clearly he didn't know what to do, but taking say 10 days of antibiotics costs nothing...
I was then asymptomatic during 3 years, and totally forgot about all of this. Those times I was searching for a job, and I realized than I was unable to managed to stress on the job market, being full of anxiety. Then I started to have some malaises, panick attacks, aches. I was very lost about that, just did some basic exams, that did revealed low blood pressure, and problems with heart. That's all. After one year, I almost fully recovered without any treatments. And then in September 2004, in few weeks, everything did exploded : Facial palsy, stiff neck, cognitive impairments, diffculties to walk, to talk, to concentrate, depression, anxiety, having the impression of becoming mad (very frightening), impression of depersonalization, very very severe headaches, paralysis of an arm, neuralgia, high pressure in the head, and so many other symptoms I was bed ridden most of the times. Then as for many of you, began the long search with lot exams, different opinions.......I had one good feedback from an MD. She said you are about to collapse, what clearly happened two weeks latter.
Then I started to think about the tick bite, and asked for a serology. It returns postive only in IgM, since I was beaten three years ago, my MD said it was a false negative. I had this re done and then it came negative. Then I started to search and saw that in some patients, only a IgM reaction was found, so I switched to an other MD and asked for an ELISA test, and then it returned once again positive in igM. So I decided to see what I first considered specialists of Lyme at the French Pasteur Institute. The MD said at once I had not Lyme, but asked for an ELISA and if postive for a Western Blot. Still in IgM, the ELISA was positive, and then I had the WB positive in IgM (p41 and p22). Latter I had p25, which is OspC. I was given doxy for 15 days. At this time I new that doxy won't do the job, and I switched to the hospital. I was then given 3 weeks of ceftriaxone. Within 10 days the headache was gone, so I was very happy. I was said to wait 3 months for full recovery. The MD I saw spoke about persistent forms, but not that much. As expected, every symptoms reappeared, even worse. Then second round of ceftriaxone.....that drove me directly to the emergency unit. The biggest herx I ever had. A friend of mine knew Dr. Malawista so I shew my Wb, and he confirmed it was a true positive one.
I then switched to the French Garches Hospital, and was given the Donta protocol, i.e. macrolides+plaquenil over 3 years. It did slightly improve my health but not too much, so we I had again cefriaxone, and then doxy. I had continous herx, but with no improvement, that leads me to think that the infection is older that I believed. I had a complete exam, with a lumbar punction that revealed two many proteins in the LCR (0.80, upper normal 0.4). I then switched to the excellent Pr. Perrone, trying different combinations of drugs. When trying flucnazole, I had very very large herxs, so we decided going one with this protocole. In July 2009 I was totally symptom-free and the happyest guy in the world. Two months latter, I was again bed ridden, since I relapsed....Up to know I have been very ill. i.e. almost 14 years of disease, one quarter of my life. Thinking that all was in my head, I we wife asked for a divorce (when I was bedd ridden) and I lost my children. More painful than the disease itself......
Since I have low CD57, both NK and T (here about 10) I saw an immunologist that suggested sclerosis. I had second lumber punction (proteins : 0.86, upper normal 0.4).
If I stop the treatment I relapse within a week........Over years we tried Riamet (very effective), stromectol (very effective to). I have herxed a lot but with no large improvement, fasygine was also OK, as fluvermal.
Recently I decided to use Doug Coil machine, and bought a darkfield microscope....Just to see cystic forms, spirochetes, and atypical forms. Just had the confirmation that killing Borrelia is quite impossible for me.
I will post on microscopy and pulsed magnetic field. Very amazing.
Here is my story
Jean

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ChronicLyme19
Posts: 564
Joined: Mon 11 Aug 2014 17:42
Location: NY, USA

Re: Jean

Post by ChronicLyme19 » Tue 15 Sep 2015 2:47

Hi Jean, sorry to hear things are not going well. Welcome to the forum. Have you been checked for co-infections as well? Has you immune system function been evaluated?
Half of what you are taught is incorrect, but which half? What if there's another half missing?

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