LymeNet Flash: At a Crossroads in Treatment -- Chronic Lyme

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Posted by painted turtle (Member # 7801) on :

I have the chronic form of lyme disease and after going a few decades undiagnosed, finally got diagnosed last year.

I have been on antibiotics (oral and IM) for a full year now.

I say I am doing better but it is really funny how that is quite relative. I mean, I say I am doing better but really, I am in a state of debilitation.

My LLNP has moved across the country and I am in a state that is not at all knowledgable with what to do.

I have been off abx for about three weeks. I realize I need some intense physical and mental therapy and I cannot count on the abx alone.

I still have a tremendous amount of symptoms and feel that I will need to go on disability.

What I want to do is stop abx. and focus on the immune system through herbs and vitamins and the physical therapy and trying out some ways to get my brain to work again.

I am seriously considering moving to anohter state in the northeast to get a dr. but the huge problem is employment, although I do have a partner I can count on...I really don't want to be that kind of burden. Not to mention health insurance.

I made appt with DO in southern Maine, first opening not til January!!

Was going to do IV. With the IV I thought, if it could knock out the neuro symptoms so I can function in the workplace without special accomidations I might get my life back. Despite the risk.

Yet...the IV is not guaranteed.

Does anyone have opinions and impressions on the courses available???

I know I have rambled in a couple different directions but the main thing:

1. Need disability
2. Likely move to northeast for new dr.
3. Want to go w/o abx for some time to focus on physical therapy and brain processing -- although still racked with daily pain (sometimes feel as if need a wheelchair), and a total inability to really get much done.
4. Can't get IV in my state of Texas right now, so not doing IV...and may do IV later if find another dr. in different state.

I just know as much as abx are crucial...there is a lot more to that to chronic treat lyme, and I have a feeling, I may just have to learn to accept and live with all of what this has left me with.

Posted by bettyg (Member # 6147) on :

for disability info I replied with last night, look for HAIL'S DISABILITY POST in medical.

copy/paste it to your word processor and print it off to keep for disability process! Bettyg [Big Grin]

Posted by 5dana8 (Member # 7935) on :

Hi painted turtle

I know its frustrating. I don't know much about disability so I'll just relay my short story in hope it may help.

I have had lyme 20 years & would consider myself chronic.

I did 6 months IV and then 2 years orals. It took this long to start to feel better.

I am now doing rife since my stomach gave out in hope this may stem the tide.

Don't really have any answers about moving. This would seem problamatic because at any time the LLMD could be pulled out by the boards or just retire.

Is there no way you could trvel out of state for a LLMD instead of moving. I had to drive out of state to see my LLMD. Thank God I didn't relocate because the freakin board drove him out.

I wish I had more anwers for you

Hope you can find your road to wellness, where ever that may be [group hug]

Posted by Virgil and Mary (Member # 9602) on :

Virgil was not chronic but with the help of homeopathic preps and Glyconutrients he has been able to get back on his feet and feel almost normal.

We know of someone who was chronic who did use the glyconutrients and now feels she is symptom free.

You are very right to want to build up your immune system and let it start doing what it was created to do, repair, restore, protect and defend your cells. Healthy cells give you healthy organs which in turn give you a healthy body. It just takes time and patience and perservence.

God bless you in your fight against this debilitating condition.

Posted by Aniek (Member # 5374) on :

Get your amino acid levels tested. You can do it through a 24 hour urine catch test through LabCorp, which is covered by many insurance plans.

I discovered my amino acids were extremely low. Years of Lyme, my body has the deficiency and because of it can't get the nutrients out of food. It creates a downward spiral. Basically it caused my autonomic nervous system to malfunction.

I'm getting it back to normal by taking the amino acids I'm deficient in, with B-12 sublingual along with folic acid. There are other supplements my doctor includes in the program.

His theory is that many of my symptoms are not directly caused by Lyme. They are symptoms of the ANS malfunction. Getting the ANS back up and running will make me feel better and help me fight the Lyme.

Posted by 5dana8 (Member # 7935) on :

Hey Aniek

I think I might have asked you this already but can't remember-

What kind of amino acids do you take? And by mouth or IV?

Posted by painted turtle (Member # 7801) on :

Thanks Betty for directing me to the disability post! I've printed it off and hope to get some help with it.

Yes, Dana, you're right about the move being a risky proposition. Such a hard thing to figure out right now!

Of course I'd like to be able to function again. I am considering getting a wheelchair for as needed situations and at the same time...pushing myself to do physical therapy when I can.

But that causes pain the next day so I think taking it slow and figuring how to fight and not give in to this.

My amylase level continues to drop getting even lower.

Thanks for the idea about the amino acids...I'll get that checked.

Dana, I hope your stomach returns to normal!!

I do have a neuro appt next week, maybe he'll help with some of this further deterioration on my leg, spine and brain trouble!

While I think I am making the right decision to take a break from abx and try to give my body a fighting chance......and build up immune....

I still feel a few things are coming back, mostly neuro related. But at the same time, w/o a dr. in state, my choices are limited, very limited.

Thanks everyone again for responding to my post! Definitely hard decisions to make and I hope i don't crumble through it but stay strong. I realize that so many others of us here are in the same kind of challanging boat.

PS -- Does anyone have indicator of what continuous lowering levels of amaylase may mean?? I originally started chekcing because of shooting pains through abdomen area.

Aniek, I think getting the body to learn to absorb is so key! I agree with you.

My red blood count now shows a little low so that may indicate anemia...is there a co infection associated with anemia??

Phone appt. w/ lyme specialist next week will hopefully also direct me to the right path.

Mary thanks for offering that support, I continue to draw on that strength of spirit somehow to get through each day.