Disabled? On SSI?

I wonder if anyone was declared disabled from lyme and the symptoms and gets SSI or SSDI? If so, how do you feel about that?

I should say that I'm not very clear thinking right now, having a lot of neuro symptoms, and panic, anxiety. I might ramble to get this out. ... I got lyme in 1989 when I was 9. It's in my records as a probable spider bite with a purple ring lesion and then followed by months and years of what doctors called sinus infections, fevers, various complaints, until the doctors referred me to psychiatry and stopped treating me. By age 16 it was very extreme, I was bedridden for about 3 years and was only managing to go to school part days. My parents kept taking me to specialists though and I was eventually treated by my first LLMD. He treated me for a number of years with oral abx and I got better but still never 100%. He finally decided I was as good as I could get, and I accepted that and stopped going to him. I dealt with lingering symptoms for about a year or so, falsely thinking I could muscle through it since it was as good as it could get, until I had a major relapse. I went to a new LLMD, a well known one, Dr. H in NY, and tested positive for lyme and coinfections by igenex. Highly positive actually. He started treating me, eventually putting me on IVs twice and herbs and supplements. After about 2 years I again got mostly better but kept the lingering fatigue, migraines, joint pains, etc. It was very expensive for my parents to pay for the herbs and supplements each month, plus driving from PA to NY. I really started to believe I'd always have the lingering symptoms but thought if it wasn't in my brain causing panic and hysteria then I could live with it. I stopped formal treatment, because I thought my best option was to just manage the remaining issues rather than costing my parents over $600 a month to stay the same. This was in 2008 - 2009.

I was declared disabled and collect SSI because I cannot work enough to support myself. I'm 34 now, and thankfully but embarrassingly, I still live with my parents. I worked a part time at-home job for a couple years but even that became too much. I was too tired and the migraines and joint pains were too bad to keep up.

Over these past years I've bought antibiotics to take regularly to keep the symptoms knocked down. For the past week however I've had a SEVERE flare up of neuro symptoms. Crying hysterically, can't focus, migraine, muscle twitches/jerks, sweating, chills, panic, feeling hopeless and ashamed.

I've always relied on my Christian faith to hold me when I felt embarrassed about sleeping my life away (about 14 hours a day) and feeling sick and collecting disability. I don't want to be like this. I had a thought today that maybe God is telling me that I am using this as a crutch, that maybe I could do more if I pushed myself. Even thinking that sent me into a panic with sweating and shortness of breath, thinking maybe I'm not trying hard enough, and I can't tell if this might be true thinking or if it is encephalopathy and neuro symptoms clouding my thinking?

Has anyone on here been put on SSI and do you struggle with the guilt? I'm scheduled to see a new LLMD, this one within PA and willing to take insurance to help with costs, but that appt isn't until December and I have no idea what he'll tell me. Part of me wants him to still find illness, to prove I'm not crazy or inventing this, and part of me is so ashamed to be declared disabled that I think I'd deserve to be sent away. Everyone else works and lives their lives, I should be able to too.

I'm sorry this post is so long. I'm really struggling. Please pray for me. And God bless all of you trying to get better.

Hi Jeanmarie!!

Welcome! I'm so glad you choose to join our community!!

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.

Although I was infected for 40 years and haven't been able to work since 1994, I haven't ever been able to get on disability because my work history was previously so spotty due to being too sick to keep a job a lot of the time - but had I been able to get it, it would have changed my life for the better. At least I would have had a steady income to help support my kids with.

I used to beat myself up regularly for not being able to support my kids in a better way, as I had no family that was willing to help out. Here's what you need to tell yourself, and anyone else that you wish to tell - it's not like you have a choice with this!! You are ill - too ill to work and hold down a job, and that's what disability is all about!!

I was wondering if you have tried any of the herbal protocols like Buhner's? buhnerhealinglyme.com/the-protocols/

Do you herx horribly and easily? That is usually an indicator of gene mutations not allowing the body to detox well and can block your healing.

To me, it sounds like you still have an active infection, since you have not yet been able to live without symptoms. I wish you the best of luck with your appt in December. Hopefully this doctor is good and will think outside the box!!

You are quite lucky to get SS disability, with on non-CDC FDA approved lab for pos test results. Someone was on your side.

You know there are plenty of able bodied people living with parents now days- the cost of living is getting to high in America. So dont beat yourself up over this.

In many other countries its normal and accepted for families to live under the same roof - even several generations in part of the developed world. Since America is financially going in that direction (downhill), this will be the new norm sooner than later.

Its funny that the government balks at financially helping ill people, yet sees nothing wrong with fully supporting able bodied individuals on welfare.