Re: Jumping out of skin feeling & Hypercoagulation

[Guest guest]

JUMPING OUT OF YOUR SKIN

My son and I also have this. Doc calls it a " hypersensitive startle reflex " and

tells me it is a very common neurological manifestation of late-stage Lyme.

Somehow, the " threshold " for neuron firing is lowered.....in fact, all kinds of

neurochemical processes in the brain are disrupted as a result of long-term

inflammation secondary to infection with Bb., as well as other bacteria and

viruses like EBV, CMV, etc. I too take Xanax PRN for this, but find if I can

maintain a good pH that this symptom lessens considerably. I always turn out to

be very acidotic when I am extra jumpy, overly anxious, having volatile mood

swings, etc. My poor husband has scared the poop out of me numerous times just

by coming into the same room and talking to me if I don't know he is there.

Poor guy now starts warning me as he is coming down the hall........ " Don't

panic, it's just the guy you're married to coming in to talk to his lovely wife "

he says. <grin> He has startled me to the point of heart arrhythmias and tears

on numerous occasions. Certain noises will also cause the hyper-active startle

response. Same thing with my little boy. He literally recoils in fear if I

come into his room and surprise him. It's not like I'm sneaking up on him or

anything.......it is just an over-reaction to a stimulus. Neurontin helps my

kid and I also take Keppra for neuropathic pain, but it seems to lessen this

startle reflex as well. I hate this symptom.

HYPERCOAGULATION

In a round-about way, this long-term systemic inflammation which chronic lyme

causes also initiates the cascade of events that causes the hypercoagulation

issues also being discussed right now. There is a great explanation of this

ISAC (Immune System Activation of Coagulation) on the HEMEX site, run by Dr.

Berg. www.hemex.com .

This link actually discusses the theory of how this hypercoagulation cascade

happens http://www.hemex.com/isactheory.html

And if you go to the hemex site, you will find that this theory first started

out with Chronic Fatigue and Fibromyalgia patients..........then, as they

investigated other chronic illnesses (Gulf War, Lyme, etc.) they found that it

was applicable to all chronic states of inflammation, regardless of the

etiology.

I developed the Antiphospholipid Antibody Syndrome which puts one at very high

risk for developing clots and was sent to Dr. Rodger Bick in Dallas, who is an

expert in this area. Do a google search with his name and APS or

Antiphospholipid Antibody Syndrome and you will find more than you ever wanted

to know.

Unfortunately, 60% of people who use Coumadin for this disorder

fail........meaning they develop a clot or worse......throw a clot and suffer

MI, Stroke, Pulmonary Embolus, etc. It is nothing to mess around with. I am on

Fragmin 5000IU subQ daily to cover this. Fragmin is a low molecular weight

heparin like Lovenox and is preferred as it acts on the Factor X in the

coagulation cascade............which is completely different from how Coumadin

works, as I think another poster pointed out. Plus, Coumadin is a difficult

medication to regulate and is affected by practically every other medication we

Lymies take as well as diet and hydration status. Too many variables to

control. However, it is cheap and the Fragmin or Lovenox is about

$800/month..............I thank God, literally......that my insurance has

covered this for 2 years so far. It is administered as an injection, in the

belly..........don't cringe! The needle is teeny-tiny, like an insulin syringe,

and you just have to " pinch an inch " of flab and inject it. Relatively

painless, although I do sometimes develop hematomas if I inject too fast and

they are painful until they dissolve/are absorbed. They are like little knots

or lumps under the skin, where blood has collected.

Doc says medication will be necessary until systemic inflammation goes away,

which in chronic lyme, is unlikely. Additionally, when Dr. Bick did the whole

coagulation work-up, I found that I had inherited 3 genetic clotting disorders

in addition to the acquired one (APS). I probably would never had known this

until I had a clotting episode had my LLMD not been on top of the HEMEX theory.

The Hemex site has a heparin protocol on it along with typical patient responses

to the protocol. It's been a long time since I read it, so I'm not sure how it

differs from what I'm doing. If you can use regular old heparin, it is a BUNCH

cheaper..........I should go back and re-read it. I think it has something to

do with the half-life.....like maybe regular heparin doesn't last long enough

and would require multiple dosing per day rather than just one.