lee
Submitted by lee on Fri, 2006-01-13 07:36

My story started in feb 2003. I was healthy or so I thought until then. I did have little signs, IBS and some heart palpataions. These were easy to dismiss because they came and went. I did have pneumonia when I was 25 . After that I suddenly became allergic to most antibiotics. The allergy always happened on the 4th day.In May of 2001 my son and I got a wierd virus that left me with a cough every spring and fall that would last for a month. Then in Feb 03 my gland swelled in my neck. I was put on zithromax and nothing helped . Levaquin next that I had to stop on the 4th day because of heart palpataions. After this it was all down hill. Symptoms progressed to severe swallowing difficulty,dry mouth end eyes,fatigue,panic,numbess,tingly,insomina,night sweats, brain fog, and the list could go on. My blood work is all negative for rheumatic disease all that shows is an elevated white blood cell count.I found a website that treated rheumatic illness with minocin.I had my blood tested by pcr and tested positve for m. pneumonia and m. hominis (low titres) and cpn igg and igm positive. I started minocin in feb 04 . The first week my eyes swelled shut. At four months I started feeling much better. I held steady with improvements until aug.05 and then a big relaspe. I found this site and have convinced my gp go call Dr.S and get me started. I have upped my b12 to 6 a day ,added b100 and folic acid ,nac and a couple of other things.What I have noticed since upping is that my nails have grown hard and fast. I am currently upping my minocin(dr. s) told me to stay on that. I do notice on the 4th day after the increase my face and neck go numb, then painful and then they calm down. I go to my gp on tuesday 1/17/06 to start zithromax. I will be testing  blood again at that point to see where I am. Thanks to this site I really feel I can get well again. As a side note my husband has ra (in remission) and the dog was diagnosed with lupus because of dry and inflamed eyes he was put on 1500mg of tetracycline and niacin and is symptom free. Lucky dog. It did take him 5 months and he slept the whole first month. He also limped alittle in the first month of treatment.

 Lee, this is such a relief.  We have been waiting to hear, knowing it would come if you got on the right track.  Good luck next week.  Zith has done wonders for me added to my daily Rif, Doxy, and every 3 week Flagyl.   Happy, happy for you.  I told my dr. about you and he said "If it will make you happy, I would do it". 

Rica 

Ignorance is voluntary bad luck.  Lauritz S.   A true Viking

If you come to a fork in the road, take it. Yogi Berra

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Hello Lee

> I had my blood tested by pcr and tested positve for m. pneumonia
>and m. hominis (low titres)

Are you saying you had quantitative PCR for these mycoplasmas? That is most interesting. I'd be very interested to know the density of these organisms in your blood if you know the numbers.

Clinical antibody assays are often quantitative or semi-quantitative, but the clinical use of PCR usually is not. I think alot can be learned using quantitative PCR.

lee

 

Eric,

I had my blood tested at the arthritis research clinic.http://www.tarci.net/ . They have been mycoplasma pcr testing for years . They were Dr.Thomas Macpherson Browns Lab.My titres were both at 100.The dr. at the lab told me that the cpn was my big problem.
 My cpn was reported as pos. and equivocal. I will have it sent again on tuesday  the lab is sending the test kit to my gp.This time I will get actual titre numbers for the cpn and I hope the the other two are lower or gone.I will let you know. Have you been tested?

200mg doxy daily, 500 zithromax mwf,flagyl 1000 m-fri.rifampin 2x daily,chloestryramine 2x daily

Lee- We'll be eager to monitor your progress with you, especially as you can now get on the full protocol.  Update your blog as you get into it!

On Wheldon/Stratton protocol for Cpn in CFS/FMS since December 2004.