Does a Lyme diagnosis help a SSDI claim???

Discussion in 'Fibromyalgia Main Forum' started by brainfoggy, Jul 18, 2008.

  1. brainfoggy

    brainfoggy New Member

    I was just diagnosed with lyme with the Igenex test from a LLMD. I also have other issues, EBV, CPN, Mycoplasma and all the hormonal stuff so I think of myself as now a Lymie with CFS. I'm in my second appeal for SSDI. DOes anyone know if this will strengthen my case? Or is lyme considered treatable and not a true disability?

  2. PVLady

    PVLady New Member

    Bumping for responses
  3. hopeful4

    hopeful4 New Member

    My original claim was for CFS/FM, and I won a partial award. The judge did not take my case back to the date I claimed of onset, primarily because I had seen naturopathic doctors, and that doesn't count with the federal court.

    While I had it on appeal, I was diagnosed with lyme disease, as the cause of the CFS/FM. My doctor put together a very impressive letter which showed that all my symptoms back to the date I claimed of onset, were caused by lyme disease. She even had medical citations throughout.

    The doctor and the judge at my appeal hearing both agreed that in fact lyme was the cause of my disability, and I was given a retroactive award to the date I claimed. The tricky part was, that lyme disease did not have a "code number" they could use. The judge did not want the case thrown out by a review judge, so he and the doctor agreed that the code for immune deficiency could be used.

    Even if lyme were considered treatable, if it causes you to be disabled that is valid. A person can be disabled, and later become well again and able to work. But during the period of disability they have a valid claim.

    Do you have an SSD attorney...that is, one who specializes in SSD? Also, take a look at the "Disability" tab above, and click on Scott Davis for further information on how to win your claim.

    Best of luck,
  4. marti_zavala

    marti_zavala Member

    Here is what I think, doesn't mean much as I having only experience with 1 disability case, my own.

    If you have a pathogen (Lyme or EBV) and it is cleared up by the appropriate medication, it is NOT ME/CFS, it was "just" Lyme or EBV. These are not disability impairments because they are treatable.

    If you have a pathogen and it CANNOT be cleared up by the appropriate medication, and you have triggered over into immune dysfunction, and the long symptom list for ME/CFS, then you have ME/CFS which is a disability impairment. Your trigger may have been the original pathogen (Lyme or EBV) but it is no longer "just" Lyme. In other words, you could get rid of Lyme but still have immune dysfunction and be very sick.

    Having said all of that, it is important to list all the diagnoses. Don't just stop at Lyme, check to make sure you don't have babesia, bartonella, chlamydia pneum. Rocky Mtn Spotted fever, Mycoplasmas, strep, staph, MS, Lupus, RA, etc, etc.

    By showing all of the POSITIVE results of these tests, it shows that the immune system is weak and you are susceptible to other illnesses.

    By showing all of the NEGATIVE results of these tests, it shows that the doctors have done their due diligence in making sure you don't have a treatable illness since ME/CFS is a diagnosis of exclusion.

    These are just my opinions and no one had to agree. Personally, I would consider myself an ME/CFS patient with multiple co-infections and Lyme as the trigger (If you know for a fact that Lyme was the original trigger).

    Hope this is helpful. AND I hope the appeal rules in your favor.
  5. erica741

    erica741 New Member

    Marti, great points! I'm in a similar situation and keep going in circles with my thought process on whether to send my disability company my postive Igenex results.

    I've been on disability for 2 years, and MetLife called me yesterday to tell me they are "concerned about my lack of progress" in the past 2 years and that I have to see one of their "independent" doctors for an examination to determine whether I am still disabled.

    I am faxing over to my claims rep information supporting my claim that I am still disabled, including printouts from the CDC's website on statistics of CFS disability and recovery, and the difficulty of diagnosing CFS...since it is a diagnosis of exclusion, no doctor would be able to conclude my level of disability in one examination.

    I am also faxing over my most recent viral titers results from Dr. Montoya and my recent elevated mercury test results.

    I am not sure if faxing my Igenex results would help or hinder my case, since I am CDC negative. My mom and some friends have pointed out that MetLife could actually use my CDC negative results against me, and so I should maintain that my LLMD diagnosed me clinically.

    Mandy, what have you presented so far in your SSDI case? Did you send in you viral and other bacterial lab results? I would think the CPN and Mycoplasma alone would suffice, no?
    [This Message was Edited on 07/19/2008]
  6. brainfoggy

    brainfoggy New Member

    Marti you are always a great source of wisdom and info, thank you. I believe now that Lyme was my trigger and it hid out for quite some time and I had minimal syptoms of it prior to contracting EBV. After EBV, I think it reared it's ugly head, went away for a while this winter and came back full on with a vengance this April. I believe it cycles.

    What I have sent so far to disability are documentation of diagnosis's from my CFS doctor. No lab results. I was told that all the paperwork I filled out for the attorney was to retrieve all lab work. None of the diagnoses list CPN, Mycoplasma, EBV or Lyme which I now know I have through lab testing. I now have quit the FFC and am seeing a LLMD who I LOVE and who isn't taking advantage of me because I am sickly. I'm finally in good hands but realize there is only so much he can do. I called my SSDI case worker, and told them the new Lyme results. The case worker handling my case is not all that sharp he said probably would help, I was hoping I'd get the actual attorney she specialzes in CFS and is supposed to be great. Her name is Nancy McCombs and I got her name off of the disinissues site she's out of SF. I will call the actual attorney and see what she says and repost for Erica.

    Lyme is treatable in the early stages, my stepbrother got it, when his dog died the VET not his doctor told him you probably have lyme too. He was on doxy for a few weeks, it has been 10 years and he is fine. He caught it early. For those of us who have chronic lyme coupled with co-infections and full on immune dysfunction, treatment often fails with abx and takes a long time. I'm on zithro, biaxin, and soon gemifloxacin a new drug. I'll be doing the ondamed machine for 6 months.
  7. providerwatcher

    providerwatcher New Member

    "Lyme is treatable in the early stages, my stepbrother got it, when his dog died the VET not his doctor told him you probably have lyme too. He was on doxy for a few weeks,and was fine....

    Boy, if that doesn't say it all about the current health care system, when a vet is more aware than most of the MD's.
  8. marti_zavala

    marti_zavala Member

    "For those of us who have chronic lyme coupled with co-infections and full on immune dysfunction, treatment often fails with abx and takes a long time. I'm on zithro, biaxin, and soon gemifloxacin a new drug. I'll be doing the ondamed machine for 6 months."

    Hi brainfoggy,
    It sounds like you have a strong case but you know that you have to make sure all of the documentation is in, so I would try to check to make sure SS gets all of your labwork that shows the postive and negative results. It is work that we shouldn't have to do but sometimes the attorney's office misses one OR worse yet, the hospital lab records dept doesn't follow through.

    I am curious what the ondamed machine is. I am sure that I have Lyme as well as chlamydia pneum. I do know that I have one of the mycoplasmas. I am interested in learning more about non-antibiotics ways of killing bacteria. (My trigger was bartonella, which led to sepsis and then an unknown virus, probably reactivated EBV or new CMV. I do not now have bartonella - so the picture is clearer for me. I do have knew virus and bacterial issues that I did not have when I first became ill. So it is easy for me to identify with ME/CFS with multiple co-infections.)

    Providerwatcher - I have learned alot about this illness from my dog breeder vet books.

  9. brainfoggy

    brainfoggy New Member

    The ondamed machine is pulsed biofeedback PEMF technology that neurologically stimulates tissues to "jump start" cellular activity. Helps with pain, circulation, relaxation and could speed up therapeutic modalites such as abx, nutritional therapy, homeopathic remedies... I'm starting tomorrow 1 x week for 6 months. I'll post any results I get.

    I have heard from a trusted source that treating co-infections with abx are incredibly difficult as too many people relapse after being on abx for months-years for bacterial infections. So it is either a life long thing (abx) OR trying to make the body less hospitable for these infections by raising body temp through things like infrared sauna (which I did today and highly recommend), T3, Cortef, Vit D, and methylation. You need to check for all current co-infections and go from there. CD-57 is good to do as this score is a good measure of your infection activity. My CD-57 score was high, 97 which is almost normal! It is usually a good indication of lyme activity (lyme usually 30 and below I believe) but obviously not in my case as my Igenex scores were definetly positive, CDC negative.

    My LLMD wants me on Levaquin now instead of Omnicef (allergic). Levaquin is supposed to be incredibly risky like cipro. I don't know what to do...I feel like I should do what he says but feel as if the risks outweight the benefits.
  10. kking0412

    kking0412 New Member

    am also lyme positive and that was one thing the judge was curious about. lucked out, saw infectious disease dr soon after and her sent a letter and progress notes )none, not improving, getting worse) to the judge......he also wants ti test for co-infectants. definately list it.
  11. brainfoggy

    brainfoggy New Member

    I guess I should start a seperate thread for this Ondamed procedure. My first treatment was wonderful, It is really hard to explain he said it is not like the rife identifies the meridians in your body that are gunked up or taxed. He was able to identify a cracked vertibrae I had and work on that area extra. He stuck some horseshoe shaped thing around my neck, ran this device over my body which beeped in areas of pain! He put a long electromagnetic thing under my spine and it made me soooo relaxed and pain was gone. He tweaked the nob up and down which gave out the electromagnetic inductions constantly depending on which areas he found problematic. Also said that the machine has the ability to bring lyme out of hiding the more we do and the higher he goes with the electrodes which makes it great to do with abx. He said I would have a slight herx. Afterward, felt dizzy and like I had just come out of being sedated for surgery. There aren't many docs doing this procedure. He said one other doctor in Ventura is the only other practitioner in CA that he knows of that uses it. My doc is an MD, LLMD, and my hero :)

    As far as disability, I think from others responses this only helps my claim. I just need to make sure my attorney has all medical documentation. I'm praying they wouln't deny me a second time.

    Jam338- Your CD-57 is LOW. This is supposed to be a good indicator of lyme, and infections and how well your immune system is fighting these bad guys off. Hopefully, you will get the answers you need and find a good LLMD. Finding a good doc who can give you the right abx and alternative therapies to accompany the abx is hard. Good luck and let me know if you need any help!


  12. brainfoggy

    brainfoggy New Member

    Don't know about bionic 880 and similarities or differences to ondamed. My doc recommends using ondamed during abx treatment and for 6 months after. It is $75 per treatment I do it 1 or 2 times a week. My pain level has increased today, yesterday I felt no pain, and I was told it is making the lymies agro and forcing them out of hiding. When I can get moving, am picking up charged water from the machine that is supossed to help with pain. Here is their website I'm in SLO. If you call, David is the technician that does the machine and he is super nice and informative about the machine and can answer more questions for you. Are you in CA? Good luck!