What Can Be Learned from Muscle Biopsies

[Guest guest]

Not sure if anyone on this list is familiar with these, but if so

I'd be interested in hearing from you, on or off list.

There is a neuromuscular component of my illness, it seems, that has

been progressing steadily whatever gains I might make in other

areas. I think a muscle biopsy might be helpful, am looking for

insights into which findings might be most relevant and labs that

excel in performing these tests.

Note: I am not pursuing this because I think if they just do a

muscle biopsy presto-chango we'll have the facts we need to get to

successful treatment. I just need/want to know as much as I can

about what's going on there.

Sorry if this is a vague request, but basically if you have any

direct or indirect knowledge about muscle biopsies and the kind of

data they can yield I'd like to hear from you.

Thanks much,

[Guest guest]

Hi ,

Just to add a few points - I have a disease in the rheumatic family

called dermatomyositis (DM)and possibly another called relapsing

polychondritis (RP). My antibiotic doctor opted not to do a muscle

biopsy (the gold standard for dx'ing DM) and instead charted my other

labs, including my CK (sometimes called CPK) which is a muscle

enzyme. One of the reasons he decided not to do the biopsy is

because the point of insertion is subject to a " hit or miss " ...you

just have to get lucky.

Anyway, since being on the regimen listed below, I'm basically 99%

recovered. Still have a chronic cough (but it's improved from

coughing ~200 times per day to maybe five or 10 - I'll take it :-)

Hope this helps,

~Connie

(please forgive if I step on any toes, or anything. I mostly lurk

and am doing very well on my antibiotic protocol, Biaxin 250 mg x

twice daily for five days per week, plus Minocin 100 mg twice daily

for two days per week (note: the Minocin was just changed to

doxycycline 100 mg twice daily for three days per week - due to

Minocin induced lupus on my blood work from seven years of Minocin.

Not worrying, though...doctor feels labs will return to normal after

about a year.)

> Not sure if anyone on this list is familiar with these, but if so

> I'd be interested in hearing from you, on or off list.

>

>

[Guest guest]

Dear

Start with non-invasive techniques if possible. Electromyography can determine if it is muscle failure or nerve transmission failure. If you rule out nerve transmission failure then do biopsies. The Newcastle Group tests also look at markers for muscle wastage or catabolic destruction. If I could find my results I would post them and you could perhaps look at suitable subsets of the tests which may be informative.

Regards

Windsor

[infections] What Can Be Learned from Muscle Biopsies

Not sure if anyone on this list is familiar with these, but if so I'd be interested in hearing from you, on or off list.There is a neuromuscular component of my illness, it seems, that has been progressing steadily whatever gains I might make in other areas. I think a muscle biopsy might be helpful, am looking for insights into which findings might be most relevant and labs that excel in performing these tests.Note: I am not pursuing this because I think if they just do a muscle biopsy presto-chango we'll have the facts we need to get to successful treatment. I just need/want to know as much as I can about what's going on there.Sorry if this is a vague request, but basically if you have any direct or indirect knowledge about muscle biopsies and the kind of data they can yield I'd like to hear from you.Thanks much,

[Guest guest]

Hi Connie,

I agree with you and your doctor that if you can diagnose with as

little invasive tests as possible that is better. Sarcoidosis is

another disease in which alot of importance is placed on biopsies,

but luckily my doctor was willing to go with just one. The one I had

in the lymph node in my neck actually accellerated my disease-process

and so we decided to let it go at that and whatever bloodwork,

history and symptoms I had.

I am very interested in the abx dosing process you're using. It seems

like a cross between pulsed and high-dose regimens except that the

Biaxin seems to be the base drug rather than the Minocycline. Are you

completely symptom-free?

What tests were used to determine you had Minocycline-induced Lupus?

Was it ANA? For a long time doctors thought I had Lupus (before abx)

but they told me that there wasn't one definitive test for it. ANA

was considered a factor they looked for as part of the big picture,

but not exclusively. What they told me was that you could have a

positive ANA and not have Lupus or negative ANA and still have it

anyway.

Probably the best way to tell if what you have is drug-induced is to

go off the Mino (and not replace it with doxy) to see whether this

titre goes back to normal. If it's the Mino it should normalize

pretty quickly after discontinuing it. If it's a result of the

underlying disease-process it wouldn't.

Alot of these same bugs contribute to a number of different

diseases/symptom presentations. For example, I had a positive

Rheumatoid Factor, but the joints are about the only thing in my body

not affected by my disease(s). I probably don't have Rheumatoid

Arthritis because of my lack of joint involvement but the titre might

make it appear as though I did.

The other possibility is that you might also have Lupus that went

undiagnosed and is finally now showing up in bloodwork.

Hope this helps,

Sincerely,

Pippit

> > Not sure if anyone on this list is familiar with these, but if so

> > I'd be interested in hearing from you, on or off list.

> >

> >

[Guest guest]

Hi Pippit,

Best wishes to you! I hope you're well on the road to recovery! As for the abx dosing I'm on, it pretty much models that which is described on the FAQ at www.rheumatic.org . If you like you can read my story on http://rheumatic.org/connie.htm (please note: my story needs to be updated...after taking Zithromax for approx 1.5 years Dr. Brown switched me to Biaxin, which I've taken since 2000).

The protocol I'm on was originally developed by Dr. McPherson Brown. Dr. Franco has taken Dr. Brown's idea of Minocin + IV Clindamycin a step further...and that's why he prescribed the Minocin + Biaxin for me (instead of IV Clindamycin). I think you're right - my regimen is a cross between the pulsed and high-dose and I discovered that the Minocin helped some symptoms (fatigue, body aches and pains, extreme cold-to-the-bones feeling, brain fog, painful joints) and the Zithromax/Biaxin helped other symptoms...mainly my COUGH!) All in all, I'm almost completely symptom-free - yeah!!! I still cough probably 5 - 10 times per day, but compared to 200+ I'll take it! All other symptoms are long gone. I now work outside of the home and my brain fog has disappeared, as well.

As for the tests used to determine Minocin-induced Lupus...well, my ANA was normal in the beginning (1996 until around 2000 or so) After that, it gradually rose and at last count (in June) it was1:2560 homogenous). I think the other markers being followed were my Chromatin and Histone levels. In April of 2004 they were 66.4 and 1.1 respectively (20. and .9 being the cutoffs for normal) and in April of 2005 they were 129.1 and 4.4...and by June of 2005 they were 145.7 and 4.7. At that point Dr. Franco wanted me to stop the Minocin and substitute doxycycline (but keep on taking the Biaxin). I was out of town for most of July and just recently started the doxycycline, so time will tell....also have learned to take it with food! ick!! Dr. Franco expects my labs to return to normal once I've been off the Mino, and says the doxycycline should be fine. Time will tell. You're right, though...a lot of these same bugs contribute to a number of symptoms/diseases. I've quit worrying about the name of my disease(s)...getting better, is my goal, and I'm sure it's yours, too.

Best to you!!!

~Connie

Hi Connie,I agree with you and your doctor that if you can diagnose with aslittle invasive tests as possible that is better. Sarcoidosis isanother disease in which alot of importance is placed on biopsies,but luckily my doctor was willing to go with just one. The one I hadin the lymph node in my neck actually accellerated my disease-processand so we decided to let it go at that and whatever bloodwork,history and symptoms I had.I am very interested in the abx dosing process you're using. It seemslike a cross between pulsed and high-dose regimens except that theBiaxin seems to be the base drug rather than the Minocycline. Are youcompletely symptom-free?