Dr Baughman & Minocycline

[Guest guest]

Dear Lowelle,

Welcome, I'm sorry you were so ill but glad you are better.

I find it odd that many people on this list see Dr B yet none of them have

ever been asked to take Minocycline. You'd have thought that if he knew what

a fantastic difference it made for you he'd have pushed for trials, since

that is what he does with the rest of his research into sarcoidosis. I know

many people who have been part of Dr B.'s trials - yet none were for

Minocycline.

If such a good and easy opportunity was available for him to trial, he would

jump at it I am sure. Since he runs studies all the time, I'm surprised

after your success that he hasn't done one with Minocycline. As you say

though, money is always an issue and the health system is always short of

money.

I know of people on this list who have tried Minocycline without success,

so perhaps it just depends on what the underlying cause of the bacteria that

invaded you and caused the sarcoid was?

What worked for you, might not, or has not, worked for someone else. Same

goes for me and everyone on this list. People are helped with psychic

healing, herbs, chinese medicine, clinical trials, chemotherapy, aspirin,

all sorts of things... everyone is different.

Everyone needs to keep an open mind.

Messages don't get deleted unless they are spam or abusive. We don't do that

sort of thing here. Especially if it contains information that might help

someone. The only time we delete something else is if we are running out of

storage space on yahoogroups, and then we only delete the jokes and the like

Never things with information.

This is a support group. We do look out for each other. Ultimately everyone

wants to be healthy.

All the best,

Aisha.

Original Message:

Good Morning and a Blessed and Happy '04 to Everyone!

I am new to this board. I hope that everyone will hear me out and

this message will not be deleted.

I, too, see Dr. Baughman. My first appointment with him was in May

'03. I was diagnosed with Stage II Sarcoidosis, through a biopsy of

enlarged lymph nodes located in my groin. After taking a TB test and

histoplasmosis titer, Sarc was the disease of choice.

My Pulmonologist immediately put me on 40mg./day of Prednisone. I

felt great for the first 2 days, but soon found that getting no sleep

was the first bad side effect. I finally settled down to 20mgs./day,

plus ativan to help me sleep at night.

My Sarc involvement includes: lymphatic, right eye, lungs, liver,

spleen and neuro. It was the neurologist who ordered the MRI, which

found the lymph nodes. Thank the Good Lord for the Internet! I found

that I was not alone in this disease. Also, I found a treatment, that

I knew in my heart, would work for me.

When I first met Dr. Baughman, he recommended methotrexate for me. He

explained that I would have to have a liver biopsy every 2 years. I

asked him about the Minocycline treatment that I found on SarcInfo.

He said that he had used Doxycycline with some help for skin sarc, but

had not used minocycline. I asked him why not? His answer was " there

is no grant money. Find me some money and I will run a clinical trial

on it " . He said that I could try the minocycline protocol, if I would

keep a journal and promise to return for a checkup in 6 months. I

agreed.

Since no clinical trials have been run, it took me 4 months, from the

time of my diagnosis, until I found a Doctor brave enough to run the

risk that I would not sue him and help me. My D metabolite tests were

run and I had a ratio of 5.25, which shows an active case of Sarc. I

already knew that, because Dr. B had said so.

In November of '03, I returned to Dr. Baughman with my journal. I

showed him that I could now walk on my toes and heels (I could do

neither, when I saw him in May), the huge patch of skin sarc on my

thigh is now gone, I am riding/training/instructing horses and people

again, my back brace (which I had worn every day for the past 3 years)

is a thing of the past, I had lost 22 of the 25lbs that I gained while

on Prednisone, I was able to get off of that awful drug in July and I

can now walk longer than 15 minutes without running out of breath,

legs cramping and back giving out!

Dr. B looked at my improvements, journal and current x-rays and told

me to continue what I was doing and see him in 6 months. He only

needed to see me for 15 minutes to make that judgement.

Aisha, You asked where were the people who were helped by Dr.

Marshall? Why are they hiding? Well, I am only one of many, but here

I am. I would have been dead, if not for this protocol. I have my

life back! The reason that the word is not out is because there have

been no clinical trials. Why? NO GRANT MONEY!!! We are working as

hard as we can to get the money, because Dr. B has told me that he

will run a trial when he gets the funds. You asked about taking

chances? My Guardian Angels were sitting on my shoulder the day that

I made my decision to take my chance.

I hope that you will be open minded enough to keep this on the board.

If you need to check out my story with Dr. B, then please do so.

Lowelle Messner

Hudson, OH