Connie & - Mycoplasma Testing

[Guest guest]

Hello, Connie! Hello, !

I am seriously considering the antibiotic therapy treatment that you two

are currently under. Dr. Trentham did recommend minocycline for me

(gosh, that was 8 years ago), which I took for 6 months, and then gave up

due to the diarrhea.

However, this past 6 months, I've had two major respiratory infections,

and have been on a total of 6 weeks of antibiotics. And, the

interesting thing, is that I've been able to lower my prednisone from 30

mg to 17.5 mg. Prior to that, I was an prednisone, 30 mg. for a whole

year, and couldn't lower it due to flare ups with my outer ears.

Coincidence? I don't know....but, I'd really like to do some lab blood

work before starting an antibiotic protocol.

Throughout high school and college, I was on tetracycline for 8 years

(for my acne), and I always thought that is what damaged my immune

system, perhaps making me more susceptible to the RP. Now I don't

know...I'm interested in doing some " homework " to learn more about

mycoplasma infections, and have appreciated the websites that you've

shared with us.

So, I need to ask you both, do you recall doing any mycoplasma blood

lab work at the Arthritis Center with Dr. Franco before starting your

antibiotics.....? If you did blood work, I would like to ask you, do you

know which specific blood tests did Dr. Franco test you for, having

RP/autoimmune symptoms? I plan to share this info with my rheumy, who

seems open to to AP.

Any information re: the blood lab test are appreciated!

Thanks much!

Aloha, karen

[Guest guest]

Hi :-)

> I am seriously considering the antibiotic therapy treatment that

you two

> are currently under. Dr. Trentham did recommend minocycline for

me

> (gosh, that was 8 years ago), which I took for 6 months, and then

gave up

> due to the diarrhea.

, I am guessing that your initial minocycline (and I hope it was

the name brand Minocin, not the generic form of minocycline) was too

high and that is what might have caused the diarrhea. That is one

area that is in disagreement among the doctors who prescribe the

abx....about half of them choose the 100mg twice a day/every day

routine for everyone and the other half go with considerably

less....even as low as 50mg once a day/three days per week to start,

but they often start with 100mg once or twice a day/three days per

week.

If you went with the 100mg twice a day/every day there is the

possibility that this higher dosage was the cause of the diarrhea.

Also, Dr. Franco always recommends a high quality acidophilus/bifidus

(the refridgerated kind) to be taken several hours away from the abx,

but still to be taken every day. This, too, might have prevented

your problem?

> However, this past 6 months, I've had two major respiratory

infections,

> and have been on a total of 6 weeks of antibiotics. And, the

> interesting thing, is that I've been able to lower my prednisone

from 30

> mg to 17.5 mg. Prior to that, I was an prednisone, 30 mg. for a

whole

> year, and couldn't lower it due to flare ups with my outer ears.

> Coincidence? I don't know....but, I'd really like to do some lab

blood

> work before starting an antibiotic protocol.

It sounds like it is a reasonable suspicion to me.

> Throughout high school and college, I was on tetracycline for 8

years

> (for my acne), and I always thought that is what damaged my immune

> system, perhaps making me more susceptible to the RP.

I've never heard of any connection between abx and damage to the

immune system. I would be more inclined to wonder if the

tetracycline was keeping whatever auto-immune disease you may have

had in check and that it built back up after you went off of them.

Or, it's possible that the RP was triggered by something completely

different, but I still would not suspect the abx. A lot of people

don't like them, but it's usually due to the yeast infections that

some people get. In most cases, people can take acidophilus and

also, my internist has had me on Nystatin for quite some time.

Nystatin works well for me and it doesn't seem to have many/any side-

effects.

>Now I don't

> know...I'm interested in doing some " homework " to learn more about

> mycoplasma infections, and have appreciated the websites that you've

> shared with us.

My only hope is that they help!

> So, I need to ask you both, do you recall doing any mycoplasma

blood

> lab work at the Arthritis Center with Dr. Franco before starting

your

> antibiotics.....?

At Dr. Franco's seminar in April of '98 I had a PCR mycoplasma test

done by Dr. Nicolson's lab. Actually, Dr. Nicolson was a guest

speaker at the seminar. It's a good thing he has detailed everything

on his website because by that time, my little old brain was soggy!

Two full days of presentations, but we were well taken care of by Dr.

Franco!! (Anyways, the PCR part is important in these tests...very

few labs have the capability to use this technique for mycoplasma.

Don't let them tell you any differently) At the time, his lab was

only on a research basis and he only tested for mycoplasma. Now that

he has expanded and formed the International Molecular Diagnostics,

Inc. lab,( www.imd-lab.com ) he can work with insurance companies.

(Call and check both your insurance company and also the lab directly

to verify.)

I sort of got off-track.....yes, I was tested at Dr. Franco's office

at the Arthritis Center (he had a courier deliver the blood to Dr.

Nicolson's lab), but I tested negative, most likely due to the fact

that I had already started the Minocin a couple of months prior and

were still on them at the time of testing. People really need to be

off of the abx for at least 4-6 weeks prior to testing...I would make

it longer, if possible. You don't want to go to the expense of

testing if it is not going to be as accurate as possible. Also, if

you do test positive, insurance companies are more likely to pay for

abx, especially IV's if your doctor prescribes them. Luckily, Dr.

Franco felt confident in the dx and he agreed that I needed the abx

treatment. Also, some people will initally test negative, but later

will test positive. Sometimes those mycoplasma are not

cooperative...for more reasons than I know :-)

>If you did blood work, I would like to ask you, do you

> know which specific blood tests did Dr. Franco test you for, having

> RP/autoimmune symptoms?

They only tested me for mycoplasma, but remember, Dr. Nicolson's lab

was just beginning at the time. According to his website at

http://www.immed.org/illness/clinical_testing.html he suggests not

only mycoplasma by PCR, but several others...again, using PCR in most

cases...Chlamydia pneumoniae by PCR, Borrelia burgdorferi (Lyme

Disease) by PCR, Borrelia burgdorferi (Lyme Disease) by PCR, Human

Herpes Virus 6 (HHV-6) test by PCR, Human Herpes Virus 6 (HHV-6) test

by PCR, Prothrombin Time (PT) by photo-optical method, Activated

Partial Thromboplastin Time (PTT) by photo-optical method, and

Fibrinogen by nephelometry method.

Dr. Nicolson has done a lot of research and had found not only

mycoplasma, but one or another of the other critters as well. That's

why he recommends the whole panel.

>I plan to share this info with my rheumy, who

> seems open to to AP.

That would be wonderful!!

> Any information re: the blood lab test are appreciated!

I'm sure I've left out a lot of details, . Just start with Dr.

Nicolson's website at www.immed.org and you'll find all kinds of

info. He has willingly shared all of his research and publications.

One last thing..... My main RP symptom (the COUGH!) responded much

better to Biaxin instead of the Minocin. Minocin did a lot of

good....took care of the fatigue, aches and pains....but the main RP

part did better once the Biaxin was added to the Minocin. Try to

stress that with your doctor and show him the info on Nicolson's

site. He even has specific abx recommendations....in there somewhere.

Keep us posted and I'm sending hugs and prayers.

Connie H.