Re: Mycoplasma/CFIDS treatment options please help!

December 9, 2003

Lyme?

Nelly

December 9, 2003

this is very similar to how my symptoms developed - eerily similar.

my initial DR also did Lyme tests (titer and Western Blot). I had

mild elevations in antibodies, but the Western Blot was basically

negative. This was enough to convince him to give me Doxycycline

100mg twice a day. i took it for three months, and to this day it is

really the only thing that i have noticed any significant improvement.

i eventually saw a Lyme Dr in Boston who put me on Biaxin and

Plaquenil for over a year. I had some relief with this treatment as

well. i have been off Abx for about 6 months now and tried several

other treatments that have not been majorly effective, but i have

also had the CFS PCR test panel done by MDL. it tests for Mycoplasma,

Chlamydia Pneumoniae, and a bunch of Herpes viruses by PCR DNA

technology. It was covered by my insurance. and i tested positive for

the much talked about mycoplasma fermentans.

i have thought about trying Abx treatment again, especially since

there is alot of talk about how abx's may also modify the immune

system in a beneficial way in PWC's.

anyway, i would suggest getting the PCR test panel done by MDL in New

Jersey. I don't know if your current DR would be willing to order the

test for you, so you might want to ask about other DR's who do order

this test. I believe that many people on this list have had this test

done and could give you a referral.

Personally, i had this test done by Dr Sue Levine in NYC, and you

could certainly get in to see her. if you need her contact info let

me know.

MDL will send you a test kit for free, and you could then take that

to your local DR if they are willing to order the test for you. here

is their website:

http://www.mdlab.com/index.html

look or ask them about the CFS test panel.

personally, i would also have your DR test you for Lyme.

thanks

bill

PC - there is a ton of great info on in this group site, and a lot of

super helpful people, so keep asking questions....

> Hi all.

>

> I began having irregular heartbeats about 8 years ago. About a

> year after this I began having strange panic-like attacks and

> chest pain. I had many cardiac tests done which were all

> negative. The holter monitors showed runs of PVCS, PACS, SVT,

> all benign.

>

> This went on for years. Then, about two years ago I woke up one

> day with flu-like symptoms. I had been working out at the gym

> 2-3 days a week and felt sick quite often after I worked out. Not

> out of breath, but very fatigued. I had lost about 5 pounds and

> looked very skinny. I also noticed sore parotid glands and alot of

> GI problems. I had two endoscopys that were negative except for

> mild gastritis. I had a negative bone marrow biopsy. I went to an

> infectious disease Dr. and he found CMV (+IGG, IGM) but then

> did a PCR which was negative. This went on for a year. I saw

> many specialists. The Rheumy found low positive ANA, but all

> other auto-immune panels were negative. Other labs said

> normal ANA. The infectious disease Dr. then did a Mycoplasma

> test and it was positive (+IGG, IGM). He suggested 500 mg

> LEVAQUIN for 10 days. I went to another infectious disease Dr.

> for a 2nd opinion and he sent the Myoplasma to the Mayo Clinic

> and the IGG was normal, but the IGM was positive, so he said no

> to treat it. I'd been having chills since this past September, but

> took his word for it. A week ago I went to my cardiologist because

> I came down with a chest cold and he's known me for a while.

> He took a look at me and said I was wheezing and had lost too

> much weight. He took a look at the Mycoplasma tests and said

> we should absolutely treat with Levaquin 500mg 10days. He

> took another Mycoplasma IGG test and it came back positive!! I

> started the Levaquin and am now on day 5 with a ittle

> improvement with the chest cold. My girlfriend had had a cold, so

> it's possible this was just a virus. I believe I do hve a

> mycoplasma infection and wonder how long this has been going

> on since the arrhythmias started 8 years ago. I have lost 5-8

> pounds, but am holding at 160 (6ft 37yr old male). I eat only

> organic vegies and fish, chicken, some beef, brown rice, but very

> little other grains and no sugar (some fruit) or dairy. I am seeing

> a Dr. of Chinese medicine who has a great reputation and he is

> treating me with a combination of 14 different herbs

> (anti-bacterials, anti-fungals, immune regulating). He says to

> take the antibiotics and the herbs, and I should improve. I'm

> confused as how to treat because I've read so many conflicting

> treatments on the web. Most treatments I've read say

> Erythromicin is best. So is Biaxin and Doxycycline, and

> Zithromax. I've read these treatments can go on for months to

> years. How do I know who to trust? Maybe I should do a PCR for

> Mycoplasma (I read about a lab in New Jersey that does this)

> and find out which strain I have so I can treat with the appropriate

> antibiotic? No Dr. has mentioned a PCR and some say they

> don't believe there is a PCR test. I did my own research and

> found they were wrong. Dr. Garth Nicholson recommends the

> lab in New Jersey. How do you know if this is just a common

> walking pnemoniae mycoplasma or a systemic more lethal

> version? I also get twitches through my whole body (I had a

> negative Neuro workup) which seem to be better since starting

> the antibiotics, but are still there. My one infectious disease Dr.

> says it CFIDS since I've been run down for 2 years.

> I also tested positive for past (IGM) exposure to Herpes &

> Epstein Barr.

> Any ideas??????

> What is appropriate treatment and what are the best antibiotics

> to use????

>

> I am presently on my 6th day of Levaquin and am experiencing

> chills when lying down, cold body temperature, breathing

> difficulty lying down, sleeping problems. My BP is down form it's

> usual 125/80 to 103/64. Don't know what's happening.

>

> Thanks,

>

> Chris

December 9, 2003

Lime was negative.

Chris

December 9, 2003

>Lime was negative.

Yeah?!

Nelly

December 9, 2003

Thanks Bill!

I am seeing an infectious disease Dr. Tommorrow and will ask. I

don't know why they recommended Levaquin for me as everyone

else seems to be getting Doxycycline or Biaxin.

Any ideas???

I tested negative for lyme.

thanks,

Chris

December 9, 2003

i believe that abx in the quinolone family (which i think Levaquin is

in) are also active against mycoplasma.

here is the Nicholson link on mycoplasma and chalmydia that i usually

refer to when i have questions about treatment for these two

pathogens:

http://www.immunesupport.com/library/showarticle.cfm/id/3915/searchtex

t/mycoplasma/

the link doesn't work when you click on it, so what i do is copy and

paste in my search field and that should take you to the article...

thanks

bill

>

> Thanks Bill!

>

> I am seeing an infectious disease Dr. Tommorrow and will ask. I

> don't know why they recommended Levaquin for me as everyone

> else seems to be getting Doxycycline or Biaxin.

>

> Any ideas???

>

> I tested negative for lyme.

>

> thanks,

>

> Chris

December 9, 2003

You didn't say what strain of mycoplasma you have. That determines what the

best antibiotic might be.

Doris

December 10, 2003

I don't know since no PCR test was done. Only had the IGG, IGM

titer and a cross reference test done.

Chris

December 10, 2003

On or about Tuesday, December 09, 2003 10:36 PM [GMT+1=CET],

evilmycoplasma <evilmycoplasma@...> sprinkled letters onto the page,

saying:

> Lime was negative.

>

> Chris

Not unusual... I was always negative too (from 1976 to 2003 when borrelia

was identified in my blood). With that my medical history made sense.... I

had been misdiagnosed with Guillain-Barré Syndrome. I believe that anyone

who has been treated previously with antibiotics for 'anything' will

probably test negative for the Lyme antigen except in cases where the tests

are Lyme specific (Western Blot, PCR, ELISA etc.)

Kezzi. . . . Cumbria, UK

Aurora borreliosis - the Northern Light!!

http://tinyurl.co.uk/8ebv

The Samento Diaries - input your symptoms:

http://tinyurl.co.uk/9aa4

December 10, 2003

Sounds like you may have lyme. I would find a doctor familiar with

lyme, but there are only a few (the tests are mostly worthless).

Kell