A New Doctor I Just Saw

[Guest guest]

Dear All,

I've gone from lurkdom to writing two emails in one day. This may be a

record. I did want to let you know what I just did this week.

A couple of weeks back I was playing the " telephone a new doctor and sit

for three months to get an appointment " game yet again. My husband was

getting frustrated that I couldn't get in anywhere any earlier, and

asked me if there was anywhere where I could go to do all the applicable

tests and treatment option discussions all at the same time. I quipped

that of course there was, if you wanted to drive to Texas or North

Carolina (the two closest chronic fatigue treatment centers I knew of --

we're in Florida). His response was, " OK, let's look into it. " And

after picking my jaw up off the floor, I did. =-O

I found a Fibromyalgia and Fatigue clinic in Atlanta that is affiliated

with the one I already knew of in Texas. Apparently there is a network

all over the country. Their medical director (for the whole network) is

an M.D. who wrote the very first book I read on Chronic Fatigue -- From

Fatigued to Fantastic. That was a pretty good recommendation in my

mind, so I called them, just to see how long it would be before they

could take me. They made me an appointment that was only ten days from

the day I called. After picking up my jaw off the ground a second time,

I told my husband and started packing. =-O

We drove up there last Sunday, spent almost all of Monday with them, and

drove home on Tuesday. The appointment went as follows: The M.D. spent

a solid two hours (yes, you read it right) with us, discussing a 24 page

questionnaire that I had already filled out before we got there, point

by point. He spoke with both my husband and me and actually listened to

what we had to say. He asked what tests and doctors I had already dealt

with, and did further diagnostic testing and exams. He then ordered

enough blood tests that I had to give the equivalent of a pint of blood

(it was 40 or 50 tests, I don't remember exactly). THEN, I spent

another 4 hours in their office taking in IV solutions of ultra

concentrated nutrient and medicine concoctions. They then taught my

husband how to give me a shot and he did (amazingly well). I've got to

take one of these shots every week. I can only do the IVs when I'm in

their office though, and I won't go back for a month. :-( The IVs did

me a world of good for the next three or four days -- I could think more

clearly and I had more energy to do things for the first couple of days

after we got back. I want another one -- NOW! >

The provisional diagnosis (until we get all the results back) is yes, I

have Chronic Fatigue Immuno Deficiency Syndrome (CFIDS) and probably

Fibromyalgia (FM) too. The good news is that I've only been dealing

with a severe case for 8 months or so, which means I have a much better

chance of being able to treat it and get back to where I can work a

decent amount. They use a combination of approaches, including both

allopathic and naturopathic, which I like. The people are very good at

treating you like a person, not a list of symptoms, and they approach

everything holistically. I am encouraged to offer suggestions, ask

questions, bring in new information, etc. In other words I can educate

them as well as be educated by them. If I'd designed a system to treat

this, it would be much like what they do. :-)

They gave me a booklet with a lot of good information, a journal to keep

track of my progress and symptoms that I'm supposed to bring back with

me, a few supplements to tide me over until we get the results, a scrip

for Ambien (for sleeping) and syringes (for the shots), the vials of the

shot stuff (more high potency nutrients), and put me on a yeast-free

diet. That last one is by far the most troublesome, but apparently

necessary. I've been dealing with gastro-intestinal issues for almost

the whole 8 months and they started right after my bronchitis went

away. Apparently my flora got out of whack and I ended up with a doozie

of a yeast infection in my gut. This is contributing to my fatigue in a

number of ways -- the yeast are eating all the carbs I take in, so I'm

not getting much of them, and they coat the gut lining, so very few

nutrients can be absorbed as they should be. That's one reason why the

IVs and the shot work so well, they bypass the gut and go straight into

the bloodstream.

Therefore, I have to eliminate all sugar and sweeteners of any kind

(which feed the yeast), all white flour (which does too), all dairy

except butter (contains lactose, a sugar), any yeast based foods

(including bread, crackers, cereal, vinegar, malt-containing foods, etc.

-- to keep from re-seeding the infection), mushrooms and all other fungi

(same reason), and a bunch of other stuff. I can eat meat

(non-processed), veggies, a few low-sugar fruits, whole grains, eggs,

foods that are not processed with yeast or have no sugars of any kind,

and that's about it. I've been advised to keep to organic as much as

possible because there's less possibility of contamination. Also, when

you're eating this much produce, the pesticides can add up in a hurry,

which can also aggravate neurological and cognitive problems, not to

mention being carcinogenic. That much I knew already. They also gave

me some hi-dose probiotics (good flora for your gut) to help balance out

what's left while we wait for the yeast to die out (6 months or so,

possibly up to a year). :'( I'm also waiting for an oral Nystatin (an

anti-fungal) pill being specifically compounded for me in Colorado

Springs of all places, that should arrive Monday or Tuesday. The fun

part then is that when the yeast die off, they pollute my system until

they can be excreted, which will actually make me feel like I have the

flu. Oh, joy! :-\

Truthfully, I'm thrilled. I finally feel like I have a chance of

getting somewhere in fighting this. It's going to be a long haul,

though. I know I sound kind of excited, and I am. I hope it will pan

out -- we'll have to wait and see. I wanted to share with you all since

I've gleaned so much good information from you in the past.

Hope it helps,