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!