I don't think IGENEX is any problem for confirmation, but I can't take any antibiotics (that I know of at this time) and am concerned that the results will be negative because of that.

I am not basing my claim on lyme disease (also have a genetic muscle disease, chronic EBV and West Nile), but it would help my claim if it turns out to be a major contributor to the fatigue. I have a hearing in a few months which should give me plenty of time for testing at both if I can afford it, but just wondered if anyone else had experience with this.

There are plenty of posts that tell what's what where it comes to getting disability.

Also, check out this site, www.ssa.gov

What you really need to keep in mind, it really doesn't matter the illness as with any illness, some can work, and some cannot work.

What they really look at is "what you cannot do" because of the illness you have or the illnesses that you have.

As with Lyme, other recognized illness will come into play in getting approved. Such as Lyme causing Chronic Fatigue and Fibromyalgia. They SSA does recognize those two illness as being debilitating and many cannot work if they have either of those illnesses.

You see, just stating, alone, that Lyme has caused your problems is not enough for them.

If you had a "death sentence" disease as with many of the Leukemias, then you could expect to win your case on the first try.

But, if you have a disease such as Lyme Disease, then you can expect a lengthly battle...but, the war can be won. There are a few exceptions to getting approved on the first try with Lyme Disease, but, believe me, that is very RARE.

The majority of the applicants are automatically turned down the first try. Then you will have a chance for a Re-consideration where a few more are approved, but, the majority are not.

Then, you have one more chance and that appeal will be that your case will go before a Judge where he will either approve it or give you a chance to prove your case before him.

Mine got to the Judge stage and when he saw it, he automatically approved me. From my first application to the day I received my first check was a total of 3 years and 10 months...so, be aware that this is no quick fix at all.

One page 10 on Tincup's links for new LymeNet members is some good information with regard to applying for disability.

Another very important, well at least it did help me in the end...is to get an attorney who specializes in Social Security and is referred to you by someone who s/he has won their case. There are good ones out there and then there are ones like my first attorney...bad.

I hope this helps, I gotta get out of here.

rosemary

Thanks for the information. I'll check the posts you mentioned.

This is actually my second time through the process. I was awarded disability back in 1993 when I lived in Missouri. They gave it to me based on congestive heart failure and severe fatigue, attributing it to my muscle disease. However I think that whole period of time I was fighting a tick-borne illness. One of my dairy goats had died with a sudden fever and paralysis and I got sick a few weeks later.

Anyway, I improved enough that I was eventually able to go back to work and was removed from disability. So it's been long enought that I have to start all over again. I'm waiting now for my hearing, so hopefully it won't be too much longer.

I need to read up on their criteria for lyme and co-infections and hopefully I'll have some positive test results to show them. I'm suspecting that it's Babesiosis and possibly Ehrlichiosis since that one is transmitted through raw milk.

It's a long haul but the lump sum is nice if you finally win. But I am mainly interested in winning the claim so I can get on Medicare because no one will insure me with my pre-existing conditions.

Where are you in Arkansas? We used to live in Siloam Springs and had a really great doctor in Springdale. My family settled War Eagle and the craft fair is at their original homestead.

Jan

After looking at your last post...

Have you tested for ... duh... I just forgot!

Brucelliosis!! I remembered!!

Also.. I can't say yea or ney to which lab they will listen to.. if any.

My thought is.. since you can't take antibiotics... and since Bowen tests blood for a couple different strains of Erick/Babesia....

This MAY be able to show.. if it is there.. a positive.. where another lab may not pick it up.

Plus.. there is a picture you get.

Kinda hard for them to deny it if it is photographed... ya think?

Plus... overload them with ANY documentation you can get. Do it ALL the first time.. so you don't have to fool with it again.. hopefully.

I don't know if they can disqualify you with Bowen tests or not? I did send my paper results in to them from Bowen (not the pictures)... with my other stuff.. and I was re-approved. But I did have other tests too.

Also.. were you checked for ... here we go again...

Let me go look... Leptospirosis.

Man.. my brain is quitting early tonight.

Here is an article that may interest you...

It can come from raw milk.

Hope that helps...

Leptospirosis Fact Sheet

PDF Version of this Fact Sheet

Leptospirosis is a disease caused by a bacterium known as Leptospira

Leptospirosis is spread by contact with urine from infected animals

Humans usually become infected when the eyes, nose, mouth, or broken skin come in
contact with water or damp soil contaminated with urine of infected animals. The disease
can also be spread by direct contact with urine or tissues of infected animals, or by eating
urine-contaminated foods. Many wild and domestic animals, including cattle, pigs,
rodents, and dogs can carry Leptospira. Some infected animals become sick, while others
show no signs of illness. Some animals become long term carriers of the disease.
Leptospira live in warm, wet environments.

People at increased risk for leptospirosis are those who:

* Have contact with contaminated freshwater streams or ponds (campers, swimmers,
waders, rafters, hunters)
* Work with animals or in warm moist environments (farmers, slaughterhouse
workers, veterinarians, military troops, rice and sugarcane-field workers, sewer workers)
* Drink surface water that has not been properly treated
* Live in tropical climates

Symptoms to look for include:

* High fever and chills
* Severe headache
* Muscle aches
* Nausea and vomiting
* Jaundice (yellow skin and eyes)
* Red eyes
* Abdominal (stomach) pain
* Diarrhea
* Rash

Symptoms begin from 4 to 19 days (usually 10 days) after exposure to Leptospira. Some
infected persons have no symptoms, but most people with leptospirosis have a mild or
flu-like illness. A few people will develop a more severe form of the disease know as
`Weil's disease' with liver and kidney damage, low blood pressure, and difficulty
breathing. The illness can last from a few days to 3 weeks or longer.

Leptospirosis can be treated with antibiotics

Treatment with antibiotics may shorten the illness and prevent complications. See your
doctor right away if you think you may have leptospirosis.

Leptospirosis can be prevented by:

* Avoiding drinking untreated water.
* Avoiding swimming or wading in water that might be contaminated with animal
urine.
* Wearing protective clothing (aprons, gloves, and boots) if there is risk for exposure
to infected animals or contaminated water or soil.
* Controlling rodents and mice where you live, work, and play.
* Vaccinating dogs and farm animals (vaccination of an animal helps protect it from
the disease but does not prevent the spread of bacteria).

Center for Veterinary Public Health

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Leptospirosis


Clinical Features Symptoms include fever, headache, chills, muscle aches, vomiting,
jaundice, anemia, and sometimes a rash. The incubation period usually is 7 days, with a
range of 2-29 days. If not treated, the patient could develop kidney damage, meningitis,
liver failure, and respiratory distress. In rare cases, death occurs.

Etiologic Agent Leptospires are long, thin motile spirochetes. They may be free-living or
associated with animal hosts and survive well in fresh water, soil, and mud in tropical
areas. Organisms are antigenically complex, with over 200 known pathogenic serologic
variants. Molecular taxonomic studies at CDC and elsewhere have identified 13 named
and 4 unnamed species of pathogenic leptospires. Although certain geographic regions
contain specific leptospiral serovars and species, the serologic characterization of an
isolate is not an absolute predictor of its species designation.

Incidence Estimated that 100-200 cases are identified annually in the United States with
about 50% of cases occurring in Hawaii. However, leptospirosis is no longer a reportable
disease in the United States. Although incidence in the United States is relatively low,
leptospirosis is considered to be the most widespread zoonotic disease in the world.

Sequelae Clinical course is highly variable. The serious icteric form (Weil's disease) is
not common, but hemorrhage, hepatomegaly, pulmonary hemorrhage, ARDS, and
jaundice are among the severe features. Case fatality rate is 1 to 5%.

Transmission Occurs through direct or indirect transmission from a mammalian host.
Indirect transmission via contact with Leptospira contaminated water or soil, is thought
to be responsible for most cases.
Risk Groups Workers in rice fields, sugar cane plantations, mines, sewer systems, and
slaughterhouses; animal caretakers and veterinarians; and travelers to tropical parts of the
world involved in recreational activities in fresh water. Recreational exposures can
include rafting, kayaking, and swimming, in tropical and temperate climates.

Surveillance Currently not reportable nationally, leptospirosis is reported in numerous
states (including Hawaii). To determine the incidence of leptospirosis in high-risk areas,
active surveillance will be required.
Trends Leptospirosis continues to re-emerge as a notable source of morbidity and
mortality in the Western Hemisphere.

The largest recorded outbreak in the continental
United States (110 cases in a group of 775 exposed persons who participated in
triathlons, which included swimming in a lake) occurred in June and July 1998.

Significant increases in incidence were also reported from Peru and Ecuador following
heavy rainfall and flooding in the spring of 1998. Thailand has also reported a rapid
increase in incidence between 1995 and 2000.
Challenges The confirmatory microscopic agglutination test (MAT) is labor intensive and
not widely available.

Rapid serologic assays detecting Leptospira-specific IgM have been
shown to be sensitive and specific. The challenge is to increase awareness of new
diagnostic assays and their advantages.
Opportunities Community-based trials of weekly doxycycline for prevention of
leptospirosis during periods of high risk may be useful in developing an approach to
control leptospirosis epidemics. New diagnostic assays should decrease reliance on the
more cumbersome MAT.

December 2003

Thanks for the information. I'd never even heard of Leptospirosis. And I haven't been tested for Brucellosis yet, but that is now on my list (Dr. Nicolson recommended it).

When we started raising dairy goats we were told by many people that goats aren't susceptible to Brucellosis and we shouldn't worry about drinking raw milk. WRONG!

I cringe now when I hear about people drinking raw goat or cow milk, even if it's from a certified dairy, because so many organisms can be transmitted that aren't checked.

I have spent over 30 years with fair to poor health. I've seen at least 50 doctors and no one has been able to address anything but acute problems, not the underlying cause of my susceptibility to viruses. (I haven't had a bacterial infection in ages.)

This bout with West Nile Virus was the last straw. I'm not going to spend my life hiding from bugs and germs, and I'm very determined to get to the bottom of all this as much as possible.

I think you're right about the pictures being as much proof as you can get. But I also know that anything that isn't mainstream usually gets tossed out and then you're branded. I use alternative medicine and am very confident that it has helped me, but I don't provide any documentation when I'm dealing with a government agency.

I think I'll go ahead and start with IGeneX and if those results come back negative go on with the Bowen testing.

Although so many symptoms match the tick-borne infections, I don't have arthritis or painful joints. My muscles hurt and I have peripheral neuropathy, but no arthritis or fibromyalgia. Is that always a factor?

Jan

Thanks for the information. I'll check out the anti-cardio lipid antibody test. My blood does not clot easily and I walk a fine line between needing thin blood because of an aneurism in my heart and needing it to clot right because of esophageal varices (varicose veins in the throat) from liver damage ten years ago (probably viral or whatever tick-borne infection I might have - no one knows for sure).

With my West Nile infection for the past year I could hardly hold my head up and couldn't even continue my self-employed job. If I get approved I'm hoping I can eventually work part-time. I don't mind not having the monthly income, but it would be wonderful to have Medicare, even if I have to pay the full premium.

I live as far opposite as you can get from Siloam Springs, but, have visited there many times over the past 50 years or so. My town is just 18 miles from Louisiana state-line.

Sounds as if you are truly on the right track and already have a good idea of the process. I believe that I read somewhere, when first starting to learn about disability, that the SSA has only recently, in the last few years, recognized Chronic Fatigue Syndrome as a dibilitating illness, enough to actual prevent folks from working.

When I was researching disability was several years ago now, so I believe we are only talking at the most 6 years now that they have recognized that.

That is one of my reasons for you not wanting to just put Lyme out-there as the only reason keeping you from working full-time. But, would want to have the symptoms and what those symptoms do to you that will keep you from working for at least one full year.

Anyway, sorry about your situation, as uncertainity is kinda scary at best.

TTYL,

I am the one who posted SSD info on page 10 of TIncupt's wonderful NEWBIE site list! Please look at the sites I mentioned carefully...you will learn a lot you can apply to your/other case.

Still going thru it 4 yrs., 2 months later...2nd time around like you.

1. Make sure your SSD specialized lawyer can represent you in FEDERAL COURT!

My lawyer of almost 4 yrs. in Nov. quit/withdrew from my case after my 1st lyme dr. appt. At this time, he finally told me he could NOT represent me in federal court; another lawyer would have to do this!

It was mutually agreed for him to quit me; I was not happy with him, and I was doing all the work!

He waived his attorney fee, plus his travel fees for my 1st case, & the overnight postage/copying his office did! So it was very mutual and amicable.

2. Since he quit me, I read ALL the info in both my cases that he returned to me.

I painstakingly noted EACH exhibit page numbers w/important info only:

date, drs. name, & what was important ... rashes that no one acknowledged as lyme; memory problems/concentration, when various things were diagnosed, etc.

Then I wrote the chief ALjudge in Des Moines who had sent me a letter 2 wks. prior to my lyme dx.

IMPORTANT NOTE TO THOSE REFILING 2ND CLAIMS:
============================================
(He stated they were sitting on my 2nd case NOT working it up and NO 2nd ALJ hearing UNTIL Virginia's Appeals Council decides on 1st case there 2 yrs. then. They were using Hallex rule that I showed on page 10 of tincup's posting.)

Found out later, has to be out east 2.5 YRS. BEFORE they even look at it...if then!

YESTERDAY'S UPDATE: My Iowa Sen. Tom Harkin's office Des Moines asst. contacted Virginia's AC legislative liasion rep.

I had received a letter last wk. from AC stating they had received my REQUEST FOR REVIEW and the date RECEIVED would be put in line for review .. another 18 - 30 MONTHS! Another 1.5 - 3 YEARS! Disgusted!
=======================

AC left phone message for him. My 2 cases are being COMBINED INTO ONE CASE!

So he has a call into them again to make sure my date is first date of June 02 they recd. it....not Sept. 04 when I wrote Des Moines ALJudge to REOPEN & REVIEW my 2nd claim. ----------------------
====== -- NOW IT IS ONE CASE -- NOT TWO!
Yippee...that's progress for me!

EDITED 10-8-04:
Just reread my DENIAL letter on my 2nd claim reconsideration....the one I didn't receive until 6 months after the fact, which states:

"If the appeals council decides to REMAND your client's prior app for a NEW hearing, your prior and current app may be CONSOLIDATED FOR THE NEW HEARING. We will send you a NOTICE OF HEARING at least 20 days BEFORE the date of hearing to tell you its time and place".

BOTTOM LINE: I had thought when I heard they were combined; that they had ruled "favorable" to win. NO...looks like they are planning a NEW HEARING for the 2 combined cases! Darn..not over yet! Betty

PS - an online never-met friend went all the way to FEDERAL COURT; took her 9 YEARS! Judge had told her lawyer he was going to deny this prior to hearing. But they had an independent dr. present. When the judge asked this dr. if she could do sustainable work, he read the treating drs. written medical reports, and said NO...she was approved because this dr. was there & stated in his medical expertise of other drs. reports!

DO NOT GIVE UP FIGHTING; you have to go to hell and back to be approved.

Yes, chronic fatigue was approved 3-5 yrs. ago, but even that on mine w/12-15 other things didn't budge them.

Did you have RFC, RESIDUAL FUNCTION CAPACITY, test done by your treating dr. & rheumatologist ... needed!

plus MFC, MENTAL FUNCTION CAPCITY, tests done by your psychiatrist & psychologist ... NEEDED!

Each of above goes thru SSD's process of 8 things you can/NOT do: sitting, standing, walking, bending, crawling, & 3 others I can't remember! This is your best chance for medical documentation.

Although I had a rep from SSD in Des Moines come & talk to our fibro/fatigue support group. He said they DO NOT USE THESE ..

they are done by SSD/DDS's ON STAFF MDS who never see you but use the submitted drs. skimpy medical reports on all of us! wrong!!

My case will be an example later when I find out if they used them or not! Betty, Iowa

With all of your illness, I cannot see why you would have to fight anything. You poor person. Go to a district office and file your claim or tell them to reopen your claim. But please make sure the doctors handling your case state you are totally disabled. Also, keep of log of your activity and symptoms daily. This helps also.

Betty, I can't believe you've been going through this for four years. It took me 1 1/2 years the first time and it's looking like about 2 years this time to get to the hearing. I was told it depends on the case load in each state. I think the attitude toward lyme is a lot like the attitude toward Gulf War Syndrome or Chronic Fatigue Syndrome. They're afraid if they start awarding disability with those conditions as part of the claim they're going to get flooded with applications. I've had a functional capacity evaluation but have never seen a rheumatologist...that's probably a good direction to go since I have so much muscle pain now.

MammaLyme, I am representing myself and won the first time without an attorney. I did all of the work pulling together the records and organizing the information and I didn't think it was fair for an attorney who did a few hours' work to get 1/4 of my claim! The ALJ the first time was very nice and seemed to respect me for doing it all myself. I also represented my husband when he had a temporary disability claim and we won that, too. I know some lawyers are better than others and if I don't win at this hearing I may hire one for an appeal. It looks like I have about 10 months to prepare.

Thank you all for your suggestions and information!

NOLO'S GUIDE TO SOCIAL SECURITY DISABILITY
536 Pages
Getting & Keeping Your Benefits
David A. Morton, III, M.D.
Nolo Press - 2nd Edition, 2003

This book is essential for anyone dealing with a long-term or permanent disability. It is especially useful for professionals who deal with clients/patients who may be seeking SSI or SSDI benefits. While it deals with the technicalities of a bureaucratic system, the materials are presented in an easily understandable, and non-technical format. Samples of all the major forms used by the system are presented with guidance on how to complete them. Excellent glossaries are placed throughout the book. There is an explanation of what Social Security Disability is, proving a disability, appealing a denial of benefits, as well as a complete listing and descriptions of illnesses covered by Social Security.

Upon completion of the course you will be able to identify:

What benefits are available to disabled children
How age, education and work experience affect benefits
How to prepare a Continuing Disability Review
SSI Benefits and SSDI Benefits
And More...

I happened to run across it while looking at continuing education for my profession. I am trying to maintain 3 professional certifications in hopes I can eventually go back to work, and it turns out this correspondence course is worth 25 clock hours to me! But it turns out it helped me in other ways!

quote:

---

Originally posted by ConnieMc:
I was approved 1st time around using this resource:

NOLO'S GUIDE TO SOCIAL SECURITY DISABILITY
536 Pages
Getting & Keeping Your Benefits
David A. Morton, III, M.D.
Nolo Press - 2nd Edition, 2003

This book is essential for anyone dealing with a long-term or permanent disability. It is especially useful for professionals who deal with clients/patients who may be seeking SSI or SSDI benefits. While it deals with the technicalities of a bureaucratic system, the materials are presented in an easily understandable, and non-technical format. Samples of all the major forms used by the system are presented with guidance on how to complete them. Excellent glossaries are placed throughout the book. There is an explanation of what Social Security Disability is, proving a disability, appealing a denial of benefits, as well as a complete listing and descriptions of illnesses covered by Social Security.

Upon completion of the course you will be able to identify:

What benefits are available to disabled children How age, education and work experience affect benefits How to prepare a Continuing Disability Review SSI Benefits and SSDI Benefits And More...

I happened to run across it while looking at continuing education for my profession. I am trying to maintain 3 professional certifications in hopes I can eventually go back to work, and it turns out this correspondence course is worth 25 clock hours to me! But it turns out it helped me in other ways!

I ordered it from American Schools Association, but paid much more than the books' worth, I am sure since I also have a bunch of questions to answer for credit. But would think this would be available through a book website.

---

Connie, great info! Please copy it and paste it to TINCUP's NEWBIE post or perhaps she could copy & edit her post...just a thought. It's too good of info not to be in several places!

I just edited my other comments above with these comments on my combined 1/2nd cases:

EDITED 10-8-04:
Just reread my DENIAL letter on my 2nd claim reconsideration....the one I didn't receive until 6 months after the fact, which states:

"If the appeals council decides to REMAND your client's prior app for a NEW hearing, your prior and current app may be CONSOLIDATED FOR THE NEW HEARING. We will send you a NOTICE OF HEARING at least 20 days BEFORE the date of hearing to tell you its time and place".

BOTTOM LINE: I had thought when I heard they were combined; that they had ruled "favorable" to win. NO...looks like they are planning a NEW HEARING for the 2 combined cases! Darn..not over yet! Betty