Re: What else...?

[Guest guest]

June, where in NC do you live, would Fairfax Va be too far for you?? I am

seeing a great LLMD, let me know if you want the name of him. Hang in there,

we have all been at wits end with this disease.

Deb- Richmond VA

Husband hunts on deer populated area, this where I believe the tick came from

First contracted Lyme 1989, bull's eye rash on stomach, flu-like symptoms,

treated with Doxy for 21 days and recovered.

Re-bitten in Sept, 1998, ringworm like rash, flu-like symptoms in 11-98, went

undiagnosed until Aug 1999, symptoms multiplied and become worse. Started on

Amoxicillin 500mg and Probenicid 500mg, developed an ulcer. I am now taking

IV Rocephen

[Guest guest]

Hi June,

Your story is just oh so familiar, let me see if I can answer some of

your inquiries.

>From: June <CADDEPT@...>

>

>Marta -

> Thanks for your reply. Like many experiences that I've read, I too at

>times feel somewhat suicidal...

> I was 'clinically' diagnosed in NJ in 1992 by a Dr. Dick, Neptune,

>out of Jersey Shore Med Cntr. I have noticed lately that when I call even

>to say HI that the secy is very protective and that Dr. Dick herself is

>evasive. Lately, she said maybe it wasn't Lyme I had, but admitted that

>she felt I may have had Lyme at one time.(??!!) She also wouldn't talk to

>my Dr. here. Would you know if she might have been scared off? Does she

>still take LD patients? I'm wondering if she also has had pressure on her

>to stop treating Lyme. At the time she was treating me she was considered

>a " Dr's Dr " , an excellent clinician and one of the best Lyme Drs out there.

> Anything you can tell me?

I do have Dr Dick on my approved list of doctors who treat Lyme disease

according to the LDA-NJ, I have never heard anything bad about her. I don't

know if anyone on our list is currently seeing her, or has seen her, maybe

they will write you privately if they do. We are losing lots of good Lyme

doctors due to the harrassment and investigation of some doctors for

allegedly overtreating and overdiagnosing LD...what a joke, but sadly it is

true.

> Allow me to back up... Dr. Dick was very thorough and tested me for

>anything and everyting. Although I had been 'diagnosed' with so many

>things over the years, none seemed to pan out. Originally I was diagnosed

>with JRA while living on Staten Island, NY (sound familiar?). All the Lyme

>tests came back neg, (1st symptoms showed in 66 and numerous antibiotics

>later) she ruled out everything else. Her gut feeling was Lyme and so

>began treatment. When the Jherx's were like being hit with Mack trucks,

>she said she knew she had been right. Oral antibiotics put me in the

>hospital twice, so she tried IV/home infusion. Her drug of choice was

>Claforan (she had originally wanted to rotate me with Rocephan, but it gave

>me respirtory problems and near pneumonia). Since I seemed to be improving

>('cept for gallbladder surgery and a hysterectomy) on the Claforan (after

>horrendous Jherx), she proceeded with all guns loaded. Her aggressive

>approach gave me the ONLY 2 years of near normalcy since 1966.

A Jarish Herxheimer in response to antibiotic therapy is always a good

indicator of Lyme, sounds to me like she was right.

>Unfortunately, I started to go back down in late 1996. I gave up working

>altogether in 1998. I'm not only mourning what I had briefly, but my entire

>future(?). I'm 45 years old and have been fighting this since I was 12.

>Truly, I've had virtually no life, so what's left? Sorry - hope I haven't

>bummed you out.

That is truly a long time, I am so sorry for your suffering, when you

started to feel bad in 1996, did you not suspect it was Lyme again??? There

are no

tests to prove persistent infection, just anecdotal stories like yours and

mine and lots of people on this list.

> My SSDI? So far, it's been hinted that NC Medicaid doesn't recognize

>late-stage LD, (therefore) how can we find you disabled with a disease that

>doesn't exist? I have not received this in writing, they just keep

>assuring me they are looking into it further. !!!!!! Talk about a Catch22!

Well, to my knowledge SSDI is not based on disease, but on your ability

to work a job. You should be approved on that, not the disease. I received

my SSDI earlier this year, they listed my diseases as Lyme, CFS, Fibro, and

herniated discs.

>I indicated that I had a prominant lawyer waiting in the wings, and

>suggested they really look hard, 'cause I've got nothing better to do with

>my time (can't work) and I'm not going anywhere (can hardly walk). They

>have also gone well over their 120 day decision limit.

I applied in March 98, think I got approved March 99, I was denied twice,

and needed to appear before a judge with an attorney to get approved

finally. It was well worth the $4000 I paid the atty, it came out of

retroactive benefits. Each state handles their own SSDI claims, maybe you

should see an atty now, he can only collect a max of $4000, and it comes out

of the SSDI check, so no money out of your pocket now. He could even

expedite the procedure.

What I really was

>hoping for from SSDI was the medical coverage - I can't get insurance

>anywhere. But if they're not going to treat me anyway, I'm doomed.

> The pain is very often unbearable. Even if I could get my

>not-to-literate-but-willing-to-learn MD to write for heavy duty pain meds,

>they have specific time limits and the pharmacists here think its their

>duty to say something. I have attached a DNR/DNT to my driver's license.

>I already won't take blood. If I don't win this with SSI/Medicaid, I'm

>considering not getting medical treatment for anything, ever - no matter

>how minor. Maybe something will escalate and put me out of this misery. I

>choose my battles very carefully and pick only those I have a chance of

>winning. I don't have the energy to fight them all. Depressed? Maybe. More

>like realistic enough to know what I can't win. Here's hoping that

>SSDI/NC-Medicaid does the right thing by me and everyone else with this

>non-disease. I really would prefer to be out of pain and watch my

>grandchildren grow up.

June, I can't remember, did I send you the name of a Lyme doctor or support

groups in NC??? There is no reason to suffer like this, you definitely need

to find someone who will help you, plus you need a doctor knowledgeable

enough to fill out your SSDI claims too!

> I pray (constantly) that the NIH, CDC, research facilities, insurance

>companies, politicians, the media, and yes, even lawyers out there take

>full notice of the blast tomorrow. Once and for all, realize there's a

>problem and that we're NOT going away!!! If they don't like it - deal with

it.

Amen to that!

Hugs, and God Bless,

Marta NJ