What has been your experience w-IV abx?

[NancyD]

Here's an explanation from

www.disabilitysecrets.com/page5-13.html

 

"The main difference between Social Security Disability (SSD, or SSDI) and Supplemental Security Income (SSI) is the fact that SSD is available to workers who have accumulated a sufficient number of work credits, while SSI disability benefits are available to low-income individuals who have either never worked or who haven't earned enough work credits to qualify for SSD.

 

While many people don't distinguish between SSI (Supplemental Security Income) and SSDI (Social Security Disability Insurance), they are two completely different governmental programs. While both programs are overseen and managed by the Social Security Administration, and medical eligibility is determined in the same manner for both programs, there are distinct differences between the two.

 

What Is SSI?

Supplemental Security Income is a program that is strictly need-based, according to income and assets, and is funded by general fund taxes. SSI is called a "means-tested program," meaning it has nothing to do with work history, but strictly with financial need. To meet the SSI income requirements, you must have less than $2,000 in assets (or $3,000 for a couple) and a very limited income.

 

Disabled people who are eligible under the income requirements for SSI are also able to receive Medicaid in the state they reside in. Most people who qualify for SSI will also qualify for food stamps, and the amount an eligible person will receive is dependent on where they live and the amount of regular, monthly income they have. SSI benefits will begin on the first of the month when you first submit your application.

 

What Is SSDI?

Social Security Disability Insurance is funded through payroll taxes. SSDI recipients are considered "insured" because they have worked for a certain number of years and have made contributions to the Social Security trust fund in the form of FICA Social Security taxes. SSDI candidates must be younger than 65 and have earned a certain number of "work credits." (To learn more, see our article on SSDI and work credits.) After receiving SSDI for two years, a disabled person will become eligible for Medicare.

Under SSDI, a disabled person's spouse and children dependents are eligible to receive partial dependent benefits, called auxiliary benefits. However, only adults over the age of 18 can receive the SSDI disability benefit.

 

There is a five-month waiting period for benefits, meaning that the SSA won't pay you benefits for the first five months after you become disabled. The amount of the monthly benefit after the waiting period is over depends on your earnings record, much like the Social Security retirement benefit."

 

Once the individual turns 18 they do NOT factor in parents' income for SSI.

 

What exactly is SSI? Does it help pay your medical insurance, doctor bills? Does it help house you later on in life???? I spoke to social security yesterday and there is so much to learn about this process and very confusing. They did tell me that "disability" insurance is for adults and "SSI" is for children, but then when I called back, another agent said that was wrong. And what about medicaid?? Is this the same as SSI? Thanks

Edited June 24, 2014 by NancyD

[ktdommer]

Nancy: I have a small local health insurance company. When I had Aetna they had policies in place to not treat Lyme over 30 days. So glad my employer switched.

There is a lot of info on internet with advice for filing for disability for our kids. Sometimes I found good advice googling with key words fibromyalgia or chronic fatigue. Just that those conditions have been around longer and have more info available.

The time it takes varies by state laws, backlog and whether or not denied on first round or not. Having an attorney from the get go has been helpful. It is overwhelming even with one.

My sister is 2 years into the process and completely obviously disabled by Lyme with so many additional debilitating conditions.

I worry that if something were to happen to me and my husband that financially my son wouldn't make it. I've learned about the sad state of housing for the needy. Very long waiting lists. Aid for disabled is tricky with chronic Lyme and or PANS.

[ktdommer]

Proving disability can be a challenge. My son has working hands and legs. Having to prove he can't do anything. Also they looked at depression but determined it is treatable. I didn't have my son committed every time he acted up so he doesn't have a paper trail that would be helpful. With Lyme, we often didn't go to ER or to doc. No paper trail again. Finding out that some symptoms haven't been documented. For example doc says encephalopathy but it isn't in report and says he doesn't need an MRI to know. But disability judges do. We stopped seeing neurology, gastroenterology, rheumatology and cardiology and treated with just Lyme doc. Worked very well for son but now not enough current specialists to complete reports.

I am learning that the quality of what the docs submit is KEY.

[NancyD]

Powpow, somehow I missed this post. I'm delighted to hear your DD is doing much better now...such great news!

 

We tried Riluzole several years ago but it was disastrous for my DD as it caused severe motor and vocal tics and took months to get rid of -- only after doing HD IVIg. After mentioning this to our neuro-Lyme specialist he told us Namenda has very different properties.

 

DD cannot take any psyche meds. We tried more than 40 over the years. They only make her worse. Now I understand why after looking at her 23andMe results.

 

You're right, it's as important to focus on autoimmune aspects as it is the underlying infections. Our neuro-Lyme doctor believes it was DD's congenital Lyme and co-infections that caused her autoimmune problems, which in turn caused the PANDAS and Hashimoto's. That is why he is recommending twice daily IV abx and weekly LD IVIg in addition to Namenda and everything else we are doing (abx, antimicrobials, detox, supplements, etc.).

 

 

Yikes, what an awful experience, powpow! Was she treated for Lyme and Babesia first for a while? We've been treating PANDAS for 11 years, Lyme and Bart for 3 1/2, Babesia and Hashimoto's for 4 mos. We started with abx, then HD IVIg, monthly LD IVIg, more HD IVIg, added more abx and cyst buster, then added Antimicrobials and herbs, doing ART for past 8 mos. Also been treating methylation for 2+ years. I checked her labs and Hashimoto's seems to be under control with Armour thyroid and GF diet.

Primary symptoms are severe anxiety, OCD, skin picking, and mood dysregulation. DD has been homebound for 10 mos and has been in and out of hospitals. Had to withdraw from school and rarely comes out of her room. Her Glutamate and Dopamine neurotransmitters are high. We are going to try Namenda first before doing IV abx. The neuro-Lyme specialist we went to suggests a 4-month trial of weekly LD IVIg (.05 grams / kg) after 3-mos of doing IV abx. If we don't get insurance coverage for either IV abx or IVIg I don't know if I can pay out if pocket -- our out-of-pocket costs are already $50,000-$75,000/year.

One thing that can cause psychotic-like symptoms in DD is artificial dye and titanium dioxide so we ensure all foods, medication, toothpaste, gum, etc. are free of that. They must cross the BBB very quickly.

I will have the Rocephin ART tested first.

Powpow, to what do you attribute DD's recovery?

Great suggestion sf_mom. We'll start with Shoemaker panel and if that is positive do the Real Time Labs Urine Mycotoxin Test.

Thanks powpow and sf_mom!

My daughter was treated with multiple abx, herbals, homeopathy, the works for close to a year before the PICC was placed. She was only 10/11 then.
She is over 16 now. 5 years of her life lost, in ######. She now has only some OCD behavoirs and anxiety and a few tics. That is it.
It is a miracle. She was room-bound, like your daughter. Did not speak, only screamed. Incontinent. raging. suicide attempts. self-harm (cutting legs, neck).

 

We did try Riluzole, which, if I remember correctly- is similar to Namenda. I did think that offered some relief, though not enough for the severity and crisis situation at the point she tried it. I am really hopeful for you with the namenda!

 

another thought, has she tried a tricyclic anti-depressant (clomiprmaine is one)? That, at very low doses (25mg) has also offered a bit of OCD relief for both my girls (i have another that was clear-cut PANDAS & she recovered after pex, steroids, ivig and intensive CBT). SSRI's made one daughter violent and worse- but clomipramine seems to be helpful.

 

 

The treatment she recieves now (since aug 2013) is monthly IVIG 1g/kg, cellcept, clomipramine, plaquenil, aspirin, IV solumedrol monthly & a round of rituximab in April. We started seeing big changes by about 3-4 months of this new protocol. The only other time she recieved relief was after pex (twice) and after high dose steroids- though those improvements were much smaller and short-lived. The new team treating my daughter has found anti-cardiolipin antibodies and an undifferentiated connective tissue disorder (based on symptoms and postive RNP antibodies.) This quick and agressive treatment has made a world of difference. I am always concerned that people may focus on infection and be missing the autoimmune portion-(my personal soapbox!) and that is why I asked about the Hashimoto's.

 

[NancyD]

I know, ktdommer, this worries me too!

I worry that if something were to happen to me and my husband that financially my son wouldn't make it. I've learned about the sad state of housing for the needy. Very long waiting lists. Aid for disabled is tricky with chronic Lyme and or PANS.

[NancyD]

Thanks for the insight, ktdommer. As much as I need to file sooner rather than later the thought of hiring an attorney worries me, especially when I may have to pay out of pocket for IV abx. At least I can complete the paperwork and then decide.

Proving disability can be a challenge. My son has working hands and legs. Having to prove he can't do anything. Also they looked at depression but determined it is treatable. I didn't have my son committed every time he acted up so he doesn't have a paper trail that would be helpful. With Lyme, we often didn't go to ER or to doc. No paper trail again. Finding out that some symptoms haven't been documented. For example doc says encephalopathy but it isn't in report and says he doesn't need an MRI to know. But disability judges do. We stopped seeing neurology, gastroenterology, rheumatology and cardiology and treated with just Lyme doc. Worked very well for son but now not enough current specialists to complete reports.
I am learning that the quality of what the docs submit is KEY.

[trintiybella]

Thanks to both of you for your help. I don't know what I would do without you!

[ktdommer]

Our attorney doesn't have any fees unless she wins for us- sort of speak. SSI pay would start from month of filing so I think of back pay as her fee. I can't remember the percentage. She has already filed and then filed an appeal. She has a good success rate when in front of a judge. The hope was we wouldn't need her by then. Time will tell!

[NancyD]

So she works on a contingency basis. Interesting. I wouldn't have expected that for SSI filing. She must have a good track record if she's that confident to accept a contingency fee. I love the idea it's retro to day of filing. All the more reason to file sooner rather than later. Does she specialize in healthcare law?

 

Our attorney doesn't have any fees unless she wins for us- sort of speak. SSI pay would start from month of filing so I think of back pay as her fee. I can't remember the percentage. She has already filed and then filed an appeal. She has a good success rate when in front of a judge. The hope was we wouldn't need her by then. Time will tell!

[trintiybella]

It is kind of frustrating that I my daughter can't qualify for SSI because you must have less than $2,000 in assets (or $3,000 for a couple) and a very limited income. I do have some money saved, but I want to have something left to help my daughter later in life. I wonder if there is anything else out there for people in our situation?

 

PS My child was accepted for DDD (Division of Developmental Disabilities Residential) for later in life. She has working arms and legs and looks totally normal. I think what helped is that the state sent psychologists and case workers to my home for a year or so, and they saw my child first hand. I am working so hard so she does not need this and can live on her own. The whole idea of being under someone else's care, that does not "get" her situation is very unsettling!

[NancyD]

Indeed, it is very frustrating, especially since they do not take into consideration ratio of out-of-pocket medical expenses to income. But this will change when your DD turns 18. Then it will be based solely on her income.

 

It is kind of frustrating that I my daughter can't qualify for SSI because you must have less than $2,000 in assets (or $3,000 for a couple) and a very limited income. I do have some money saved, but I want to have something left to help my daughter later in life. I wonder if there is anything else out there for people in our situation?

 

PS My child was accepted for DDD (Division of Developmental Disabilities Residential) for later in life. She has working arms and legs and looks totally normal. I think what helped is that the state sent psychologists and case workers to my home for a year or so, and they saw my child first hand. I am working so hard so she does not need this and can live on her own. The whole idea of being under someone else's care, that does not "get" her situation is very unsettling!

Edited June 26, 2014 by NancyD

[SSS]

NancyD there is a recent post on Lymenet under medical

about an 18 year old congenital Lyme/ PANS

who recently had a complete turn around with IV antibiotics.

[NancyD]

Thank you, SSS. Very cool story! I hope I can write something similar a year from now.

 

NancyD there is a recent post on Lymenet under medical

about an 18 year old congenital Lyme/ PANS

who recently had a complete turn around with IV antibiotics.

[ktdommer]

Triniti- tried PMing but mailbox full I think.

[trintiybella]

ktdommer - you can try again. I deleted some of the messages.