About 7yrs ago I had the erythema migrans rash..I was misdaignosed then ( i have a pic of it still) I was told it it was ringworm..
Anyway since that time I have been to my dr several times over the years for numerous things. What now seems like it was associated with lyme..
Much to my surprise I had neg bloodwork and they didnt do a western blot.. I am at the point where I am not doing well at all..
My mind isnt working well ( i am a Billing/secretary) so my jobs isnt really hard on my joints..just on the mind.
If you dont have positive lyme but have the symptoms and can recall and have a pic of the erythema migrans, whats the chances of disability??
My DH told me I should talk to a lawyer about all of this as far the disability and the fact that I went misdx and still basically not DX'd with lyme..
Also because he feels that my dr knows she messed up back than and will not admit her mistake.He feels that it has been snubbed because of that fact..
I just dont know..what I do know is that I cant continue to work and be the way that I am. The past few months have been very hard and I am not feeling anybetter..
Not to mention I was in ER today, my Iliac(hips bone) and my sacrum(triangular bone in lower back)
separated when I rolled over and when It went together again the iliac ended up on top of the sacrum and had to be put into place again.
that was fun!!
Anyway. I would appreciate some feedback on what you guys think..
Hail
Posts: 29 | From Maine | Registered: Jul 2006
| IP: Logged |
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Are you referring to Social Security Disability or short/long term disability?
While the processes are almost equally grueling, the fact that you were misdiagnosed for years will have no bearing on the outcome, other than the fact that your symptoms are probably worse than they would have been had you been diagnosed earlier.
You do need a diagnosis for either and you need a supportive doctor who will fill out the paperwork and take the time to include what is necessary to win your claim.
Tell us more about the type of disability you are seeking and we can offer more suggestions.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
| IP: Logged |
Carol B
Unregistered
posted
When i was diagnosed with Lyme and went to my supervisor for reasonable accomodations I was let go on Family Medical Leave and given an application for Long Term Disability. We are living off a home equity loan for now, still waiting for a deterination on the disability-through my employer.
Seems to me, in my case-if they are not willing to make reasonable accomodations then they darn better pay the disability.
Have you brought this issue up with your employer?
I was most fortunate to test positive-by an LLMD through Igenex labs-after a frustrating two years of being referred to one specialist after another.
I'm sure you will get more specific information from others-this was just my experience.
posted
REMINDER: it is NOT the illnesses we have or don't have, it's HOW IT AFFECTS US NOT BEING ABLE TO WORK :
sitting, standing, walking, bending, reaching, climbing, using our hands (phone, fine work, grasphing), talking, etc. See my specific notes more below on this ok!
WARNING: To all reading this, I'm attaching 10 pages of stuff, so if you are not interested or wish to reply, hit the END key now to save you valuable time! Bettyg
I'm going to copy/paste my personal experience, DISINISSUES web site with GOOD INFO GALORE, and lymenet Connie's MC's recent info on a "CLAIM LETTER" for SSDI, disability insurance purposes and INCAPACITY LIST is at the end. *****************************************
SSDI, SSI, LTD procedures: Here is what I post for all on SSDI/SSI/LTD... I tried the link of the female MD ``template''; you are right; it's no longer good!
2 alternatives: use what I provide below as guidance since you have LYME disease and not filing for chronic fatigue.
OR go to the bad web site, click on REFRESH, and go to that site! Ask Mary, web owner, the question since she posted this on disinissues; SHE started that site! It was her close friend who okd to post her info for others. Betty Gordon
TRYING TO GET SSDI, SS DISABILITY INSURANCE BENEFITS OR LTD:
Hi! I know what you mean about memory & typing, etc....it's the pits!
I do suggest you join the FREE DISINISSUES and read thoroughly or just print it all off of the FEMALE MD with chronic fatigue, etc. she gives wonderful, detailed examples that DDS, disability reps, want to approve/deny you.
Also have you looked thru the ADULT APPROVED LIST OF IMPAIRMENTS? That's critical also!
note 1.04; look at the rest of the 14 other specific areas too....
I printed off 1-14 sections showing what brief guidelines were for each section. I used that against ALL my medical records, 3" thick!! Then I went to their DETAILED specifics for the sections that applied to my illnesses!
TIMECONSUMING....TOOK ALL 7 WEEKS from my notice of my ALJ hearing date!
So you have NOT submitted your INITIAL APP TO SS OFFICE, correct? Good, you want this to be as complete as possible so they can NOT turn you down on the 1st step as they do us all!! =============================================
What I did with an online friend was this: prepared a chart noting the specific section of 1 - 14 that my diagnosed illnesses showed the wording, dr. seen & date.
Example, 14.09 LYME disease is mentioned in but doesn't give any examples. So I showed 14.09 with my drs. name & date plus specific details about each visit where lyme symptoms were stated..
I hope you have a copy of ALL MEDICAL REPORTS...drs., xrays, all blood labs, etc. It's critical that you KEEP A COPY FOR YOURSELF! ========================================
On mine, I showed the date mailed to ALJ & LAWYER PLUS I kept a copy. Then I went to copy center nearby & copied and mailed promptly to lawyer per his request.
WHY THIS IS IMPORTANT:
if you have an ALJ hearing, request thru your local SS office to REVIEW your complete SSDI app at THEIR local office!
When you see things you submitted with your writing on, don't look at them!
Look & read only the secretative ``RFC & MFC'' done by the the in-staff DDS DRS & PSYCHOOGISTS!
You want to make copies of ALL the stuff they have & other stuff you don't have so you can use that info against them!
NOTE: I'D DO THIS DIFFERENTLY NOW!
SEND 1 COPY TO ALJ and 1 to your lawyer!
Lawyer did NOT SEND MY REPORTS TO DDS STAFF PROMPTLY;
they didn't see many things when they denied me although I had good medical info!
Examples, 2 RFC, residual function capacity done by PCP dr. of 26 yrs. & rheumatologist;
plus 2 MFC, mental function capacity, done by psychiatrist & psychologist....the 1st person was the one judge used in APPROVING my 2nd claim for severe depression/effective disorder & anxiety.
ALJ's don't like working with LYME, FIBRO, CHRONIC FATIGUE. MENTAL is on approved list of adult approved impairment list! So don't fight it, go with it! ============================================
This message is sent upon subscription, and again monthly.
There are many more links, as well as advice and "useful" messages in the Files area of the website. Go to http://groups.yahoo.com/group/Disinissues and click on Files.
The website provides compilations of several areas of interest which are commonly requested and mentioned. They reflect the collected wisdom of this group. Check them out - you just might find the information you were looking for! Take a look at Files that are not specific to your situation, because they might be helpful anyway - what works for Social Security may work for LTD claims, what applies to CFS, chronic fatigue syndrome, may apply to your medical condition.
The Welcome Message and Group Guidelines are in the Files section, if you need a refresher on how this group works.
You must register with Yahoo to use the website, but note: Be careful not to permit your address to be put into the directory when you register. Put as little as possible into your public profile. You do not need a Yahoo address to use the website. Your email address is what Yahoo calls your "alternate address."
Please let the moderators know if any links have changed.
Contact the moderators at [email protected] or for AOL subscribers: Click here
BETTY NOTE: Look at the female MD''s DETAILED BACKGROUND right below this paragraph. Print off her detailed responses as to why she could NOT do her job, and then apply that to YOUR own job as to why you no longer can do any type of sustainable work now nor in the foreseeable future! NO LONGER GOOD 5-17-06: http://www.cfids-me.org/socsec.html
************************************* An online friend of mine from disinissues web site posted this info today, so I have copied it over here.
Subject: fibro/CFS disability info [Disinissues] what does an Functional Capacity Exam entail?
Lyme, fibro, & CFS support group members who are/will be filing for SS Disability insurance benefits, please go to the web page shown below.
There were 9 pages of info I printed below area where you can order from fibro network a 70 page packet.
I too plan on including this info when I send my FINAL packet of info to chief ALJ before my June 16, 2005 hearing...my last chance! =======================================
Please read the site mentioned on: WHY DISABILITY TESTING FOR FMS IS OFTEN MISLEADING ADVICE FOR FM/CFS PATIENTS AND THEIR DISABILITY TEAM.....
Also after this article are the following articles:
WHAT COULD BE CAUSING DELAYED-PHASE FLARES?
BENNETT'S METHOD FOR ASSESSING FUNCTION IN FMS..
TECTONIC CHANGES IN DISABILITY LAW by lawyer Joshua Potter, CALIF.
MEDICALLY DETERMINABLE IMPAIRMENT REQUIREMENTS FOR CFS & FMS
DOCUMENTIONATION...VIEW IT AS AN INSURANCE POLICY
I printed this out in larger print for my eyes....9 pages! Will read it thoroughly and mark up 2nd copy to go to ALJudge for my 2nd hearing as medical evidence also.... *********************************
8-12-2006 from Connie Mc, lymenet.org
I wrote the following for my LLMD:
Guidelines for Use in Writing Letters/Reports in Support of Social Security Benefits for Patients With Tick-borne Diseases
By: Connie MS, CRC, CVE, CCM, from www.lymenet.org Disability Advocate
General principles of focus to consider when preparing this report:
1. The report/letter must have a longitudinal perspective that allows Disability Determination Services (DDS) to see the frequency, duration, and recurrence of major symptoms of tick-borne diseases. Medical records will generally show this, but a letter needs to state the general course of disability thus far, as well as the projected length of the disabling condition.
2. The report/letter must include descriptions of all treatment regimens and responses to therapy must be given; example:
oral antibiotics, and general response. Did this result in limited improvement, which necessitated the initiation of intravenous therapy?
3. The report/letter must include any significant restrictions the patient has experienced in his/her normal activities since the onset of the diseases.
Here, we are asking the physician to describe changes in lifestyle, such as: household, personal care, and social activities, as may be determined through history. Also, the physician can report any observed limitations; such as, walking, climbing, etc. as the patient functions in the exam room. A ``Incapacity Checklist'' can be helpful, and the physician can have the patient complete this for reference before the support letter is written. (A copy is at the end of this document). The patient needs to provide specific examples of limitations in function, which the doctor can document in the letter. The advocate can then obtain supporting statements from others (friends, family) to confirm what the patient has reported to the doctor.
4. The report/letter must report on any objective testing which has been done to determine the appropriate diagnosis. For example, any positive lab studies, and other supporting evidence such as positive SPECT scan results, positive findings of joint inflammation on x-rays, etc. Any testing which supports the presence of illness is acceptable. Includes the clinical examination, not just lab studies.
Once the above is established, the physician must then identify and describe the most significant and disabling symptoms frequently associated with TBD, tick-borne disease. For example:
1. Fatigue - the existence of chronic and/or recurrent debilitating tiredness, which is demonstrated by an inability to perform basic minimal tasks of daily living (ADLs).
2. Neuropsychological - the existence of forgetfulness and distractability, inability to concentrate, memory impairments, confusion, difficulty thinking, photophobia
3. Neurological - numbness and tingling, sensory impairment.
4. Pain - recurrent and chronic pain which significantly impedes the performance of ADLs and unrelieved by prescribed treatment.
Location of such pain and any objective findings utilized to diagnose the origin of such pain. This includes: chronic headaches and myalgia.
5. Sleep disorder - Any disruption of normal sleep patterns that is recurrent and does not respond to treatment.
6. Depression - Is depression primary or secondary? Is it related to the patient's reaction to the daily physical symptoms? Are there other psychiatric symptoms present which are apparent to the physician?
7. Cardiac - heart block, hypertension, and other cardiac complications.
Sample Letter
Re: DOB:
Please be advised that I have provided medical care for Ms. Blank since 5/7/2003. Ms. Blank carries a diagnosis of persistent Lyme Disease made on the basis of a number of clinical features, including: marked fatigue, chronic relapsing pain, CNS irritability, nonrestorative sleep and severe cognitive dysfunction.
This patient is disabled by incapacitating fatigue and myalgias aggravated by repetitive or sustained physical activities.
Her symptoms are consistent with her disease, which has been confirmed by positive IgM Western Blot in May of 2003. There is also evidence on examination of persistent disorganization of motor function as evidenced by peripheral nerve dysfunction.
She frequently becomes confused during discussion of treatment recommendations, and must rely on others to insure she has information she needs to proceed with recommended treatment. Ms. Blank has had marked impairment of her daily activities and finds it difficult to get out of bed on most days. She routinely requires assistance with showering and dressing. She uses a cane for ambulation. She cannot stand for more than 5 minutes to prepare meals, and must obtain assistance from others. She cannot lift or carry dishes or a gallon of milk. She cannot vacuum or mop or garden. She is unable to do laundry. She has difficulty managing her medication and must receive assistance from others to make sure she takes the recommended medications at the recommended times. She has difficulty getting in and out of a car and is unable to drive due to cognitive dysfunction.
Ms. Blank has been treated vigorously with oral antibiotics as well as supplements and other supportive care. There has been limited improvement thus far, and therapy with intravenous antibiotics is recommended for the near future.
By reason of the unpredictability of the frequency of her multiple physical symptoms, Ms. Blank has been totally and permanently disabled from engaging in, and more importantly, in sustaining any gainful employment activity, even light part-time sedentary work at home.
Ms. Blank's status has been consistent since I first began seeing her in May of 2003.
It is my opinion that she is likely to remain disabled for the foreseeable future, but, in any event, for not less than 12 consecutive months. Prognosis remains guarded and uncertain.
Sincerely,
Name: ____________________________Date: _________
Incapacity Checklist
How does your condition affect:
1. Your daily activities
2. Your ability to stand, sit or walk for a long period
3. Your ability to lift or carry weight
4. Your ability to understand, carry out, and remember instructions
5. Your ability to respond appropriately to your supervisor and coworkers
6. Other physical or psychological functional restrictions
7. Your ability to adjust to the stress of a work environment
Anyone who wants to provide this to their LLMD for use is more than welcome to do this.
I have used this same format many times and DDS and ALJs seem to be receptive to it. It includes all the information SSA is looking for to help them allow claims. Connie [ 14. August 2006, 12:00] *****************************Bettyg
IP: Logged |
posted
I just decided yesterday to take a medical leave of absence from work. I only work part-time because I attend coolege full-time so I am inelgible for the Family Medical Leave Act or any type of short-term disability. I am already starting to worry about my finances. If it wasn't for my boyfriend helping me out here and there, I do not know what I would do. I am debating on whether I should apply for disability. I need to keep my job though for the health insurance.
I would have never thought that there would be a day that at the age of 24 that I could not continue my job or even go to the grocery store without every ounce of energy being drained from me.
Posts: 73 | From just outside of Lansing, MI | Registered: Jun 2006
| IP: Logged |
AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
SS disabilty is the one I have experince with. It took quite awhile to get - over a year and a half.
and then they didnt get me the full time - it took another year for them to backdae it to the actual beggining of my disabilty.
I wasn't diagnosed for at least 13 years. That has absolutely no bearing on your case.
if this is the disabilty you are planning on filing for my advice is to get a lawyer. They take 25% plus expenses (expenxes wher eless than two hundred dollars)
I could have never done all the work - ton of paperwork - collecting records - blah blah blah.
I would get started right away because it takes awhile to get approved.
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I am on both SSDI and LTD. I also applied for, but was denied, disability retirement. I had attorneys on both my SSDI and retirement cases.
When you are filling out forms you need to think about how you feel on your WORST days, not the best ones. If you had to work you would definitely be at your worst, not your best. Keep in mind how long you are able to function before you need to take a break, a nap, or whatever stops you.
Yesterday I had an appointment with an attorney about an unrelated matter and she noticed my fatigue and difficulty maintaining my train of thought by the end of our appointment. Things like that are what can make a difference.
My SSDI attorney sent me for neuropsych testing and that's what really won my case for me. Having someone with experience to guide you makes a huge difference. He knew where to send me and what types of things I needed to have to show my inability to work.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
| IP: Logged |
posted
Hi thank you to everyone that posted..very interesting information..
I would be attempting Social security disability. I am still working though, its not very easy but I am done on sept 1st.Due to us moving.
we are not moving now though..my hubby and I feel it would be best if we stayed here until i am well again.
I know that its not easy to get on. My husband is on it, for him it was easy because he has deteriorating(?sp) hips on both sides, from steroids they gave when he had a concusion.
Well thanks again..I am sure I will figure this out..I need to find a dr before anything though..
Hail
Posts: 29 | From Maine | Registered: Jul 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Big Grin]](biggrin.gif)
Printer-friendly view of this topic