I finally have a hearing on Sept 15th for my disability. Attorney is VERY optomistic of a favorable outcome.

I am concerned though that my spinal tap was negative for lyme or any co-infections. I know, I know..... that is not uncommon but the medical examiner who will be there may not know that.

I go to a nuerologist only for pain management. He was the one who did the tap in the first place and agreed at the time that even though it was negative it did not rule out nuero lyme. At my last appt, he made the comment that tap was negative so it wasn't nuero and felt nuero symptoms may be due to sleep deprivation. Duh....Was really herxing that day and none of this really registerd until days after my appt.

Long story, but short of it is that, I only go to the nuero because my PCP is a nurse practicioner and can not write scripts for narcotics and the doc she is under refuses to for long termn treatment. She has been wonderful in researching lyme and communicating with Dr C so it is worth going to nuero to get pain meds.

OK, having said all that.....I once upon a time had an article with references stating that spinal taps were only 20% (?) positive. But amidst all the other chaos in my house my microsoft word has decided to go on the blink and I can't retreive or find my documents.

I do have a very positive western blot, just trying to cover all of my bases in regards to what doubts the judge and ME may have.

I've tried doing a search on the various med publication sites for this article and either can't find it or can't get the file to open.

Please if any one has any articles with references email me and I will be glad to give you my mailing address plus reimburse the cost of postage, printing, time, etc etc.

Have to get this disability......

Thanks

Cheryl

I will look for it and post it.

If you have something to do in the meantime.. realx and go do it.

It will take me a bit to find it. OK?

Storm is coming.. big one.

Here is what I have so far.. but NOT what I was looking for.

Will look later.. when storm passes.

OK?

Wanted to post this now so you know I haven't forgotten.

10. Is a lumbar puncture required to confirm neuro-Lyme? Why?

No. Lyme Disease, as stated by the CDC, is a ``clinical diagnosis''.
Research indicates that less than 20 percent of those with Lyme Disease
have shown a positive reading in the spinal fluid.

http://www.aldf.com/FAQ.asp#PARA1

American Lyme Disease Foundation- CDC
First, B. burgdorferi bacteria do not persist in easily obtainable fluids such as blood, synovial (joint) fluid or spinal fluid, but typically bind to joint and nerve tissues.

http://x-l.net/Lyme/li.htm

Antibody response, although strong and invariable in some individuals, may wax
and wane over time. Diagnostic serologic titers may be undetectable in other patients for reasons that are presently poorly understood. At least four research groups have suggested the presence of immune complexes in the sera and/or cerebrospinal fluid of patients with Lyme disease (3, 5, 10, 32).

In patients for which a state of antigen excess exists, free antibodies may escape detection and may be revealed only after use of methods to dissociate such immune complexes. Thus, the very patients who are unable to generate detectable levels of free antibodies, who are least apt to contain the infection, and who may present with the more serious illness among those with Lyme disease are least likely to be offered treatment. For example, the patient described above was seronegative for the first 5 years of her illness, during which time she sustained severe
and irreversible neurologic injury.

Western immunoblot serologic results were
inconclusive at the time B. burgdorferi was isolated from the CSF, highlighting the
fallacy of the use of this test as a "gold standard" for the confirmation of Lyme
disease. .

http://www.x-l.net/Lyme/1falon.htm

Seronegative Lyme borreliosis, once a source of controversy, is now recognized as a
diagnostic problem (30). Patients may have no detectable antibodies to Borreia
burgdorferi in either their serum or their CSF, but still have clinical disease. A
recent report described 6 patients who were seronegative and CSF-antibody
negative who were subsequently shown to have evidence of the spirochetes in the
CSF based on a positive polymerase chain reaction assay (31).

It is dark as get out.. but I THINK the storm went past us?

Oh well..

The quote you need is from Dr. Burrascano's Guidelines...

Here ya go....

xxxxxxxxxxxxxxxxxxxxxxxxxxx

From:

ADVANCED TOPICS IN LYME DISEASE-
DIAGNOSTIC HINTS AND TREATMENT GUIDELINES FOR LYME AND
OTHER TICK BORNE ILLNESSES
INTERNATIONAL LYME AND ASSOCIATED DISEASES SOCIETY
JOSEPH J. BURRASCANO JR., M.D.
Fourteenth Edition, Copyright, November, 2002

Spinal taps are not routinely recommended, as a negative tap does not rule out Lyme. Antibodies to Bb most commonly are found in Lyme meningitis, but are
rarely seen in non- meningitic CNS infection, including even advanced
encephalopathy.

Even in meningitis, antibodies are detected in the CSF in less than 20% of patients with late disease. Therefore, spinal taps are only performed on patients
with pronounced neurological manifestations in whom the diagnosis is uncertain, if they
are seronegative, or are still significantly symptomatic after completion of treatment.

SSA BASES THEIR APPROVAL ON WHAT YOU CANNOT DO THAT WILL PREVENT YOU FROM WORKING FULLTIME FOR ONE WHOLE YEAR OR LONGER. PERIOD.

So, if you keep that in mind, then you'll have a much better chance of succeeding and getting your approval.

If Dr. C has not done this for you at your request, yet, have him write a letter on your behalf. He does them all the time and is very good at saying the right thing that will win your approval.

But, you can help him and he will be most appreciative if you do this.

Sit down and write a letter to him and tell him about you normal day and what you have given up because of this disease.

Whether it is sex (lack of it), or you can no longer cook meals for burning things, or, you have to take so many pills to sleep that you at at a disadvantage the next day, or you no longer drive, cause of seizures, etc, etc.

Make sure the list is long of ALL the thing you no longer can do because of your obvious disability. Like how you have never taken your granddaughter to the movies, for it is just too tiring or that your one-year old granddaughter doesn't even know you and she lives in the same town. Tell him about you bowel movements and how they interfere with your normal day.

It doesn't matter what it is, if it is disabling, even the smallest thing that you no longer do...gardening, whatever, it really helps him to write the greatest letter just for you. This letter will make the SSA think that you have discussed all these things with your doctor, and you re by this letter, and that these things you can no longer do, indicate that you can not do your full time job nor be retrained to do another.

I did this with my PCP and my LLMD, Dr. C of MO, and when their letters hit the Judges desk, he approved me without even seeing me. So, you can see why these letters are so important for your case.

The SSA actually puts a very high score (weight) on what your personal doctors say in these letter for your case.

If you had to see their doctors, and you do not have letters of support from the doctors you see on a regular basis, then the emphasis (weight) will be on their letters.

But, if you have letters from your personal doctors supporting your case then more weight will be put on your side...that is if the doctors the SSA had you see, if you did, were saying that you are not disabled.

I hope that this helps and if you have anymore questions, please, just ask.

Thanks so much Tin Cup for the references it was exactly what I was looking for.

Rosemary, are you talking about the RCF (?) forms sent to Dr C by my atty? He did fill those out and the atty was very pleased with his responses to the questions. Same with my PCP. They went by a list I had compiled of my symptoms and how they affect my every day functioning. Do you think this is sufficient?? The atty and a very dear on-line lyme freind tells me not to worry, but I am so good at it lol.

Thanks so much for responding

I was talking about them writing a letter that is To Whom It May Concern, to the SSA.

But, it sounds as if the form you are talking about covers that area, maybe??? I just do not know.

Sounds as if you attorney is on top of things. At some point you just have to let-go and hopefully, the wheel will be turned toward your direction and you will win.

I think it is called RCF. Anyway it is a functional assessment form. The atty has different ones for pain, migraines, depression etc etc

Basically asks how many hours out of an hour workday can a person do certain things such as sitting, repetitive movements of hand, fingers etc

It was very comprehensive, if I remember correctly had three to four pages to complete. My original pcp would not touch it as she said would take a three hour visit and no money to be made in that!!!! But new pcp is wonderful and did a great job in my favor.

trying SOOO hard to let go and let God

i think (but not positive) that rosemary is saying that in addition to the RCF, that you should have Dr C (or your PCP) write you a general letter that states specifically why you should receive disability.

i think she is saying that the letter is above and beyond any legal paperwork or forms.

i think she is also suggesting that you write a letter in your own words about all the things that this condition now prevents you from doing, and let the DR use this as a framework for his (her) letter.

i too am trying to figure my best ways for disability.

Cheryl and others,
I have personal/painful experience with this 4 yr. process unfortunately.

RFC is Residual Function Capacity test normally completed by your regular treating dr. and rheumatologist.

MFC is Mental Function Capacity assessment test done by your psychiatrist who has dx you with your specific mental illness (me..severe depression & anxiety) and psychologist.

I had 2 RFC/MFCs done on me...total of 4.

IOWA's SSD/DDS office does NOT use these I discovered unfortunately this past year which I paid dearly for. DDS's IN HOUSE DR. writes out their own WITHOUT never having seen the patient using the drs. medical file dictation! (Iowa's SSD rep supposedly told my lawyer that he felt my 2nd claim would go thru this time, but let's do a RFC & MFC too for it definitely to be approved.) IT WASN'T APPROVED; from what I can tell; my 4 paid for assessments were NOT included nor even looked at.

If you go to TINCUP's post of ALL WEB SITES. I sent her more yesterday dealing with the SSD system, rules/regulations, & HALLEX rule.

Please go there & read the specific post where LYME is on APPROVED list of impairments...read that section good!

The clincher is this statement, "claimant is NOT able to do any substantial work now or in the foreseeable future"! It's worded something like this ok. You can NOT do ANY type of work. Then I would have Dr. C/others state ALL things you can not do.

Each treating dr. should state that in their medical letters to SSD/DDS.

Is this your 1st or 2nd claim? My 1st one is "hung up" in Virginia's appeals council for over 2 yrs. When I officially got my LYME DX 7-12-04, I contacted my Iowa Sen. Tom Harkin's office to see if they could expedite my claim at AC. NO, CLAIM HAS TO BE IN VIRGINIA'S AC 2.5 YEARS "before" anyone sees it! They did order my ALJudge hearing papers, but NO ONE had been assigned to it!

Also, I have waited almost another full year for my 2nd claim filed day after 1st was denied, to have my 2nd ALJudge's hearing face to face! 2 wks. prior my lyme dx, I bugged my Phoenix attorney's office to find out when my June hearing would be since that is what they promised.

She called Des Moines' DDS office. "NO, we have not worked up her case, and there will be NO hearing until APPEALS COUNCIL makes a decision on 1st case."

I was furious, went to our local SS office to get a copy of the HALLEX rule they were using NOT to have my 2nd hearing. New guy looked it up & printed it for me after getting ok from director. I had her give me the email of DM's DDS director.

I emailed a no-holds barred letter to him that why was I never told this when they denied me on the 1st 2 steps of 2nd claim, etc. They had the perfect timing of putting that in my denial letter, etc. Told them how ashamed I was of them, etc. Said I would be sending this same email to SSA's director in Virginia which I did.

I had email reply promptly next day from DM director saying he couldn't chance their form since he didn't have responsibility for that, but forwarded my email to Kansas City's SSA director. She too had prompt response to me 2nd day agreeing DM could not change their form letter. I had some good suggestions and it crossed many division lines, etc. She would send it back to DM's hearings & appeals office + Regional office in KC.

2-3 days letter I was sent a COPY of a letter sent to my Phoenix lawyer telling him what had happened w/his office, my email to them & 2 incorrect statements I made. One was that they had notified me in Jan. 04 that they would NOT work up my case/NO hearing. He proceeded to get after my lawyer saying he knew he'd talked to me about legal proceedings, but please talk to her again.

NOPE, I never received the letter in question, nor had my lawyer's office after I bugged them for about 2 weeks, before I found this out! She had it faxed to her & then sent it overnight mail after I waited 7+ months for it!

So since my lawyer got into trouble w/our DM CHIEF judge because I contacted them DIRECTLY and not thru them, this lawyer I had for 4 yrs. in Nov., "withdrew" / dropped me immediately after my LLMD 1st appt. He/staff couldn't work w/me...nothing they did pleased me, etc. So he returned my files, both cases, 1 wk. ago.

Never found out whether they submitted the last 8-10 medical records I'd faxed in July AFTER my LYME dx. I'm going thru my records now to see anything else he got directly that I did not furnish him as they came up.
Betty G., Iowa

PS - When you are in your hearing, have paper/pen handy to write yourself a note so you can speak up for yourself later on! My lawyer wouldn't let me do this....I have many regrets on this as our memories don't have SHORT TERM memories. We need to answer things that they bring up that our lawyer does NOT reiterate later & question us.

My judge had me talk at the beginning. I should have talked much longer & about all the things I could no longer do, etc. If you start crying, FINISH what you were talking about that caused you to cry. Judge tried to change the subject the 2 times I broke down. Take kleenex. I took my heating pad I had on high the entire time as well. BEST WISHES TO YOU.

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quote:

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Originally posted by twobusymom:
Rosemary

I think it is called RCF. Anyway it is a functional assessment form. The atty has different ones for pain, migraines, depression etc etc

Basically asks how many hours out of an hour workday can a person do certain things such as sitting, repetitive movements of hand, fingers etc

It was very comprehensive, if I remember correctly had three to four pages to complete. My original pcp would not touch it as she said would take a three hour visit and no money to be made in that!!!! But new pcp is wonderful and did a great job in my favor.

trying SOOO hard to let go and let God

Cheryl

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