For Patrice

[Guest guest]

Patrice:

I'll try to keep this short, but I know it'll be long.

It's now suspected that I contracted Lyme and Babesia by blood

transfusion in 1976 during emergency surgery as my initial symptoms

presented 5 weeks post surgery...

In 1976 my initial disease presentation also came on like gang

busters, I had a extemely high ANA I also had extremely high WBC-

over 18K, and a really screwed up RBC panel- damaged RBCs, fragments,

etc. And I had many unexplained fevers. I seemed to be falling appart

all at once- inside and out.

Over the dext decade had multiple dx of Lupus, autoimmune heymolytic

anemia, autoimmune Uveitis, possible MS, possible Sarc, basically so

many dx's that they settled on Complex Autoimmune disorder...

complete with symptoms of several autoimmune disorders.

For better or worse I consistantly refused corticoid steroids. Mainly

becuase Iwatched my mother die at 52 years old after 15 years on

prednisone for Sarcoidoisis ( Hah! so now you know the DOcs also told

me I inherited the tissue type for autoimmune disorders).

Strikingly similar to your case, in 1993, in less than 6 hours I

went from being able to run to being unable to walk. I had pain that

was a 12 on a scale of 10. I was disabled with this for 3 months -

with pain everywhere bad enough for me to want to die. Dr.s could not

alleviate the pain, nor did they know what was happening (they went

from guessing viral to possible MS).

This bizarre pain episode remitted almost as fast as it came on

(I was doing Bee Venom therapy as an alt therapy.) I woke up one

morning 50% better, and 3 days later the pain had vanished.

In hindsight I'm pretty sure this was neurological pain.. even

though I had some honker swellings where the tendons met the bone in

about 15 places - the actual joints were OK. The swellings were

above or below the actual joint... but the pain was way more than any

pain that could be emitted from joints.

It felt like my bones were shattered glass with unbearable pain

upon any movement.

I had medical episodes which mimmicked different autoimmune

diseases about every 4 to 5 years.. from about 1978 thru 2000 and

I'd 'almost' get a new autoimmune dx. each time this would happen.

I have read that in cases untreated chronic Lyme- the many

colonies of Lyme can can syncronize and all replicate at the same

time- about every 5 years - whether this is true or not- I don't

know - it's sounds pretty fantastic to me.. but the pattern fits my

life.

In my heart I just had this strong feeling that I was being MIS

diagnosed. How could someone get numerous DIFFERENT autoimmune

diseases every 5 years? WHy would my blood panels be so screwed up?

Well obviously I didn't die, I didn't take the conventional drugs,

and my symptoms would remit for a time then take on a new twist.

Because I was documented by conventional Dr.s, but I remained

untreated by conventional means- they were stumped as to why my

disease course did not progress they way they predicted for each

autoimmune malady..

My Ohpthalmologist diagnosed the Lyme- the whole time really not

beleiving it himself. He's only JUST totally beleived it because my

eyes have been OK for over a year - and he and I have a 10+ yr. Dr.

Patient relationship.. and my eyes were never OK in those 10 years.

When my symptoms dropped one by after I was on abx - the Docs

couldn't beleive it. The most spectacular ones gone are Reynauds

syndrome, Dry eye, red eye, Anterior and Posterior Uveitis,

Trigeminal nerve pain, constant head aches, color perception changes,

and migrating body pain (you know the pain like little blow torches

are turned on in specific quadrants of the body- then the flame is

turned up.. or feelings like piano wires are strung throughout the

body- and someone Twangs them whenever they please..) I even had a

Bakers cyst the size of a baseball go away on the backside of my

right knee that the Osteo Doc said would keep growing as long as I

lived. My allergies are gone and so are my chemical and food

sensitivites. ALso gone are all my GI problems - bloat,

constipation, indigestion .

Actually I am so bloodly well.. I can't beleive it myself.

........ I fully understand the theory or cross reactivity, and

molecular mimicry, and I understand that some pathogens proteins are

very close in structure to the body's own self (and that antibodies

alledgedly get confused and attack self) -

My 'problem' is that I never thought that the immune system is

as " flawed' by design as the conventional Dr.s thought, and they

still think the immune system is flawed. i.e. Post Lyme SYndrome

(autoimmune) is alive and well in 2005.

WHile it won't be proven in my life time - I beleive occult

pathogens are at the root of all the autoimmune disorders.

As far as abx go - I had to pulse my abx- and I never 'tuffed it

out' and kept taking them if I felt either toxic or

sick....................

I'd cut the abx back or stop, take supplements, recover and start

again.

I try not to be subjective in my assessments of my own case - but

I'm not sure anyone can be totally objective about themselves -

so I have to say that I actually do think that bacteria and parasites

were the root cause of all my problems for the last 30 years and I

beleive my positive Lyme and Babesia tests (Western blots and PCRs)

from MDL and Igenex.

Good luck with your therapy - and please keep us posted.

Barb