Lyme & Disability?

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Mike55178
Veteran Member


Date Joined Sep 2006
Total Posts : 638
   Posted 6/1/2010 11:42 AM (GMT -6)   
Hey everyone....

It's been a long time since I posted on these forums. I try not to think about my Lyme much and go about my day as normal as possible so I haven't been on here for a while. Well I have made some progress over the past few years. I was out of work a year while doing IV Rocephin and then IV Zithromax. I then went back to work after my picc line was taken out on a 3 days a week basis. Mon, Wed, Fri to give me a day of rest in between work days. That went ok but then my work disability ran out and I couldn't afford to work 3 days without the disability pay on my off days. So I had a meeting and we decided to try 4 days a week with Wed off for me to continue my Bicilin Injections which I do one Friday and one Tuesday night. They kill my leg because its a suspension and pushes everything around in my leg going in and makes the next day pretty tough on the leg that got the shot. Well I haven't been doing too well lately. Not sure if it's a Herx or not. But it has caused me to miss more work and later today I have a meeting with my HR department.

My question is... Is anyone else on Disability with Lyme? It may be my only option for a while because I have a feeling my meeting later will be about me missing time and my 4 days a week not working out. Considering most doctors do not accept the fact that there is Chronic Lyme do I have no chance of getting approved for Disability?
Dx- Lyme & Bartonella & Babesia
 
Tx- Doxycycline 400mg (2 Months)
      Levaquin 750mg (2 Months)
      Zithromax 500mg (1 Month)
      Mepron 750mg 2x (1 Month)
      IV Rocephin 2g (2 Months)
      IV Rocephin 4g (4 Months)
      Zithromax 500mg (4 Months)
      Minocyline 200mg (4 Months)
      IV Zithromax Mon-Thurs (Currently)
      IV Rocephin 4g Fri - Sat (Currently)
      IV Flagyl Sun (Currently)
      Minocycline 200mg (Currently)


Mike55178
Veteran Member


Date Joined Sep 2006
Total Posts : 638
   Posted 6/1/2010 1:43 PM (GMT -6)   
I'm very sorry to hear that Patti. I can't believe being bedridden and in a wheelchair and they may still deny you... Now if you were that condition from any other disease but Lyme you would get approved immediately. Crazy..
Dx- Lyme & Bartonella & Babesia
 
Tx- Doxycycline 400mg (2 Months)
      Levaquin 750mg (2 Months)
      Zithromax 500mg (1 Month)
      Mepron 750mg 2x (1 Month)
      IV Rocephin 2g (2 Months)
      IV Rocephin 4g (4 Months)
      Zithromax 500mg (4 Months)
      Minocyline 200mg (4 Months)
      IV Zithromax Mon-Thurs (Currently)
      IV Rocephin 4g Fri - Sat (Currently)
      IV Flagyl Sun (Currently)
      Minocycline 200mg (Currently)


diaba
Regular Member


Date Joined Aug 2009
Total Posts : 175
   Posted 6/1/2010 7:17 PM (GMT -6)   
I am on LTD now. They tend not to care about the diagnosis, I have ms/lyme, but are more concerned about what symptoms cause you to not be able to work. My llmd went the chronic fatigue route when writing the disability letter.

Take care, diana

Jeminij
Veteran Member


Date Joined Dec 2005
Total Posts : 1336
   Posted 6/2/2010 7:13 AM (GMT -6)   
Hi Mike,
 
I got your e-mail. I will send you that info today. I also got disability for lyme (back in 1999). I had no problem getting it, but I was also bedridden at the time. It's a long process, but worth it. It helped me so much. My Dr (who's info I will give you) had to say that I couldn't perform any type of work. They also sent out their own Dr. who came to the house to do an evaluation both physically and mentally. I am pretty sure I failed both of those at the time so I got approved. It also takes about 6 months from the time you apply if you get approved to get your first check (which will go back to when you apply).
 
They do accept chronic lyme as a reason for permanent disability, but I think it does go along with chronic fatigue as he put both on mine.
 
Again, if you go see my Dr. he can help you with this as well if your Dr's won't.
 
 

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/2/2010 11:29 AM (GMT -6)   
Can anyone say appx how much one can draw in LTD? Or does it depend on what your income was?
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.


Ovaltien
New Member


Date Joined May 2010
Total Posts : 12
   Posted 6/2/2010 4:54 PM (GMT -6)   
Mike55178, I also have Lyme, Bartonella and B-Microti (all through positive tests) are you taking anything besides antibiotics? From my experience the Lyme messes with your joints and fatigue and the Bartonella attacks your muscles. If you took the Mepron you should have the B-Microti under control. Of the three the Bartonella is clearly the worst because there is basically no research on the disease and it leaves you with these disgusting rashes that don't go away. When you have bad days the rashes tend to get irritated too. I hate to tell you but the only way your ever going to get back to normal is by pounding painkillers until your body is used to moving around again. You should have your doctor write you a script for tramadol or oxycodone so you can forget about the pain and have the strength to move around. The Tramadol is the best because it's an antidepressant, gives you energy and blocks up your stomache so you don't have diarhea all the time. Looks like you've been on a number of antibiotics but the only one you've taken that deals with the Bart is Flagyll and that's some nasty stuff. When you take Flagyll in the pill form many doctors prescribe extra pills because if you don't swallow it right away you need to spit it out immediately because the taste will linger in your mouth for hours. Flagyll didn't do much for my Bart though Rifampin helped me out a lot more, but you have to endure all the pain and crazyness that comes with the Rifampin. I know that for two weeks while I take Rifampin I'm going to be tired, stupid and in pain. After that it starts to get better. Getting the Bart and Lyme is a tough break and I don't wish the combo of those two on my worst enemy. Took me two years to get to 90% of where I was so it won't be a short road back to health.

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 6/2/2010 6:45 PM (GMT -6)   
When I tried to get SSDI, they told me what I'd get depended on what I had been earning at work.
-Razzle
Chronic Lyme Disease, Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently on TPN due to bowel problems.
Meds:  IV Cipro, Heparin (to flush PICC line), Singulair, Claritin, Domperidone, Colloidal Silver (topically & nasally), probiotics, Milk Thistle, Magnesium, homeopathy.


JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 6/3/2010 6:20 AM (GMT -6)   
You can google "Medicare SSDI" and they have a calculator function that should calculate what you will earn in disability benefits if approved. 
 
And, if you haven't already done so, hire a lawyer.  I am (was - haha!) pretty savvy about these types of benefits because I administered all the disability benefits for the firm I work(ed) for (I'm still considered an 'employee', but have been disabled since 10/02.  But as 'savvy' as I though I was, I couldn't get the benefits on my own.  The lawyer will be paid only if they win your case.  They will take a percentage of it...... but it's worth every penny.
 
I think almost everyone with ANY condition gets denied on their 1st Medicare SSDI submission.  I was denied the 1st time, appealed and was denied a second time..... I was so sick I missed the deadline for my 2nd appeal... and then I just hired a lawyer and had to start the process oer again.  I didn't even have to go to court.  The judge based her findings on all the medical records my lawyer submitted (the state of Florida only submitted 2 pieces of paper), plus I had an excellent work history dating back to the age of 13.... and went on "the books" at age 16.  Other than this Lyme disease, the longest I have been unemployed since age 13, was 1 month in May 1983..... (no wonder I'm exhausted)!... by the time I got sick at age 35, I had worked 22 years straight!
 
Keep at it, you will eventually win your case. rolleyes
A small group of committed citizens can change the world-it's the only thing that ever has.-M. Meade


Mike55178
Veteran Member


Date Joined Sep 2006
Total Posts : 638
   Posted 6/3/2010 7:12 AM (GMT -6)   
Thank you everyone...

I'm still trying to work. I want to try my best before going on Disability. I am only 28 and the thought of being on Disability kind of depresses me. But I also feel like I am burning myself out and it is effecting my health so I'm torn on what to do.

JeminiJ I didn't receive an e-mail. If you wouldn't mind sending again that would be cool. My e-mail is mquirke7@gmail.com.

Oval I did Levaquin for a few months but it made my tendons so sore I could not get out of bed. I had to stop taking it. I also had to cut short my Mepron for my Babs because it turned my vision yellow for a while. My LLMD had me on Mino for a while which he said would help the Bart a little. My Bart marks went away after the Levaquin but I still have Bart symptoms and will probably treat for it again. I haven't been able to make an appointment with my LLMD for about 6 months now due to not having the money for it...
Dx- Lyme & Bartonella & Babesia
 
Tx- Doxycycline 400mg (2 Months)
      Levaquin 750mg (2 Months)
      Zithromax 500mg (1 Month)
      Mepron 750mg 2x (1 Month)
      IV Rocephin 2g (2 Months)
      IV Rocephin 4g (4 Months)
      Zithromax 500mg (4 Months)
      Minocyline 200mg (4 Months)
      IV Zithromax Mon-Thurs (Currently)
      IV Rocephin 4g Fri - Sat (Currently)
      IV Flagyl Sun (Currently)
      Minocycline 200mg (Currently)


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 6/3/2010 3:07 PM (GMT -6)   
Mike & Patti, I'm sorry about the position the both of you are in and think most of us can understand all too well.  I'm not feeling too well so apologize if my message seems a little scrambled or blunt but I wanted to share a few tips and my story because it just might help you or someone else in getting approved for disability.  It is possible and many of us more than deserve it due to our excessive pain and limitations. 
 
I was approved for both long-term disability (LTD from my employer) and social security disability (SSDI) on the first try without any problems...thank God!  The first thing I would recommend is retaining an attorney who specializes in difficult cases such as Lyme, CFIDS, Fibro...yes they do exist and you do not necessarily have to hire one from your area or state.  Experience is key...not proximity.  While attorneys will require a retainer and payment for their services regarding LTD, SSDI is an entirely different story.  Attorneys filing claims for SSDI are only paid after you have been approved and receive your first check.  The attorney receives a percentage of back-pay which is more than worth it and the amount is capped at a fairly low amount.  If you do the math, it's a no-brainer.  Many people wait until they have been denied and only then retain an attorney.  This can be a very costly mistake and can even affect the final outcome because things have already been set in motion that can't necessarily be changed. 
 
The attorneys (the honest ones anyway) who specialize in SSDI will not lie or fabricate but they will point you in the right direction as far as what tests would support your claim and review all information before it is submitted for review.  Sometimes they might ask you or your doctor to either add additional information or elaborate or possibly just reword (not make up) a sentence or statement so that it fits the specific criteria the reviewers are looking for.  Sometimes omitting or not elaborating can have a major effect on the outcome and an attorney knows exactly what information fits criteria needed for approval.  Doctors are not attorneys and generally do not know what information is specifically being looked for because the questions are fairly general leaving much room for denial, denial, denial!
 
I was originally approved under the diagnosis of CFS/Fibro before being diagnosed with LD.  Although the symptoms are generally the same as Lyme Disease I tend to believe (am not sure) that CFS might be more accepted these days than Chronic Lyme, given all the controversy surrounding Lyme.  Although it is true that a person's symptoms and limitations are what it is important not the name of the disease/diagnosis, it might be a good idea to add CFS and/or Fibro as a secondary diagnosis since very often these conditions can be a result of LD and again the symptoms tend to be identical.  An experienced attorney will be able to point you in the right direction without altering any of the facts.
 
All of this is just food for thought.  Here's a web site that can answer many questions http://www.scottdavispc.com/articles.htm
 
I did not use Scott Davis to represent me but do know he is one of the best.  If you contact his office they very well may be able to give you a referral to someone in your area since I don't believe he is taking any new clients out of state.  I know all of this because I did quite a bit of research before I filed.  I was too sick and my brain was not functioning well enough to even think about handling a claim myself.  I also worked for a major law firm and had an understanding of how the legal system in general works.
 
I apologize if I'm repeating any info that was already mentioned above...again not having such a great day but wanted to get this information posted.
 
Good luck!

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 6/3/2010 6:49 PM (GMT -6)   
Hi +Lyme, I believe if you get approved for SSDI disability and your monthly benefit (which as stated above is determined by how much you earned over the years) falls below a certain level or you are not entitled to SSDI because you did not earn enough, as long as they deem you disabled you are still entitled to SSI which I think is an additional $600 per month. SSDI is a disability benefit and SSI is a supplemental income benefit. I have no idea what the benefit/income guidelines are but if you haven't work much over the years you probably would be entitled to it. Here's a site that will explain much better than I ever could...lol...http://www.wisegeek.com/what-is-ssi.htm

daisyrlb
Regular Member


Date Joined Jan 2010
Total Posts : 277
   Posted 6/3/2010 7:23 PM (GMT -6)   
I read this thread and am compelled to say that I am so sorry for the suffering each of you endure...bedridden! wheelchairs! : o( Your spirit to not give up is inspiring.

Lyme Disease is hideous. I'm baffled at the misinformation and downright ignorance regarding Lyme Disease within the medical field.

Anyway...

Mike55178, did you see the thread "Good news about SSDI" started by waiting in FL?
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