Wellness

[bullyluv]

Hi ford...my neice has had chronic lyme for 5 years now. I understand your frustration with the system. I suggest anyone who has chronic fatigue, ms, lupus, or fibro or lyme to watch the documentary "under our skin." I am now entering the disabilty thing for my son who is autistic and will be 18 this spring. My husband and I met with a disability for special need attorney. I can tell you...it is very confusing. Everyone gets turned down the first time they apply, so keep applying. You can get lots of info from lyme message board and facebook groups. I wish you and your daughter good health! If you would ever like to chat about lyme and compare notes, just let me know. Until you or someone you know has lyme no one ever knows how horrific this terrible disease is. And don't let anyone on here make you feel badly...I have seen some very rude posters towards you...lots of good people are in here too??

[bullyluv]

Luv my teddy...I am sorry you have been infected??. I truly hate this disease! I hope you are on a good vitamin support. My neice who has lyme has had very good luck with a variety of supplements. She has been in treatment for about 2 years now and is improving. As you know, there is no cure just a hope to be symptom free. Because of this, our family is very tick sensitive! We never go out into the woods, I never let my dogs run in high grass or brush up against ivy or plants etc. We take concrete vacations I call them...city trips, disneynworld etc...never ever the woods??. You are in my prayers. Take care.

[LilacTree]

On 12/20/2014 turtle52 said:

There is A LOT of misinformation here as there always is whenever there is a Social Security discussion. I worked for SSA for 12 years and here's what I can tell you:

1. For SSA purposes, the definition of disability is that it has to be expected to last for at least one year or end in death.

2. You have to have worked ON THE BOOKS for 5 years out of the 10 before you became disabled to be insured for SSDI benefits unless you are very young.

3. A person's age and education is taken into consideration. That's why 2 people with the exact same condition may have different decisions made. As a rule, the less skilled/less educated you are and the older that you are, the more chance there is that you will be approved.

4. Benefits are NOT always retroactive. It depends on when you file and when the onset of your disability is determined to be.

5. You are only sent to an SSA doctor if your records are unattainable or there isn't enough info to make a decision.

6. You can be approved for SSDI based on a COMBINATION of disabilities.

7. Social Security laws and rules are VERY complicated. Don't rely on anyone else's info or experiences. EACH case is different.

HTH!

Good info! Thanks Turtle!

[LilacTree]

On 12/20/2014 bullyluv said: Hi ford...my neice has had chronic lyme for 5 years now. I understand your frustration with the system. I suggest anyone who has chronic fatigue, ms, lupus, or fibro or lyme to watch the documentary "under our skin." I am now entering the disabilty thing for my son who is autistic and will be 18 this spring. My husband and I met with a disability for special need attorney. I can tell you...it is very confusing. Everyone gets turned down the first time they apply, so keep applying. You can get lots of info from lyme message board and facebook groups. I wish you and your daughter good health! If you would ever like to chat about lyme and compare notes, just let me know. Until you or someone you know has lyme no one ever knows how horrific this terrible disease is. And don't let anyone on here make you feel badly...I have seen some very rude posters towards you...lots of good people are in here too??

I know that bully, and that's why I stay. I used to shy away from these people, but now I either ignore them or have my say and disregard their B*S*.

I did call my daughter last night, but it wasn't a good time. It's hit or miss with her and I have become very used to her reactions to my suggestions, which vary greatly from day to day. Last night I just apologized and we only talked a few minutes. She is going to let the attorney handle this for her (at this point). I don't have much hope that she will get anywhere because her only positive diagnosis is Lyme, which is not recognized by the SSA as an illness worthy of benefits.

So sorry you are going through this with your son. It's heartbreaking for him and for you. When this kind of things hits, it affects the whole family, and I'm sure I don't have to tell you that.

Best wishes to you and thank you for your kind and understanding comments.

[Lucky Charm]

Ford I am so sorry to hear about your daughter's condition. It heartbreaking, heart wrenching, breathtaking--literally, I'm sure.

I don't have any advice on lawyers, but read she's to see a new doctor next month. I hope it's one on the other side of the river (Philly). So many good doctors practicing in University City.

You mentioned all pooling your resources and living together and I hope that transpires. If it's been brought up for discussion, it could be good for you and them.

Please accept my prayers that all of you get better.

[kdbrown9]

Hi Ford1224 - I'm so sorry that your daughter is dealing with this! My friend has chronic lyme, and it's so tough. One thing that you may be able to assist with while the SS situation is getting worked out, is helping her research nutrition and autoimmune illnesses. The top five inflammatory foods (gluten, corn, soy, eggs, dairy) can wreak havoc on your immune system and cause flares or even constant illness. I heard a really good report on NPR about a girl with chronic lyme who finally found relief after going gluten free and watching her diet very closely (no processed foods, etc.). I have hypothyroidism (which some doctors believe to be autoimmune, although I've never tested positive for the autoimmune form - Hashi's), and I was not convinced that changing my diet could help me at all. I scoffed at my doctor but followed her "gut healing" protocol (all while laughing). You know what? It worked! The GERD I had been battling for a year disappeared, and I had to lower my thyroid medication because my thyroid started working better. It was crazy, and I never would have believed it if I hadn't done it myself. It's worth a try to get some relief from her symptoms. She might have her thyroid tested too, as the chronic stress of the lyme along with an already diagnosed autoimmune disorder make it more likely for her to be suffering from other autoimmune disorders (like Hashi's) which can compound her symptoms and make her feel worse. Lyme is so complex, and it often masks other illnesses (secondary tick infections or autoimmune diseases). I'm so glad you are able to help her and are supportive. We should all be so lucky to have such a dedicated and caring mother as you Best wishes to you both!

[goodstuff]

Your daughter's challenge will be getting disability on the basis of an illness that isn't widely recognized by the medical community. I don't know what types of non-conventional practitioners your daughter is seeing, but it may be difficult to have their reports and assessments of her condition taken seriously by the court. I actually know someone who has chronic lyme disease and is on disability -- but this person got disability on the basis of severe depression, not the lyme disease. She is pretty much on her on with the lyme.

[gabstoomuch]

Just a suggestion, it is a personal choice of every person who suffers from multiple, interconnected conditions and need disability.

File for the condition that will go through the fastest. The most recognized and accepted condition.

If I were her, I would file under "debilitating depression", in conjunction with other illnesses which would be seen in her medical charts.

People get through faster for depression because it is SO recognized as a chronic, life altering condition. It is now classified under "medical condition", as well as mental.

Trying to get it under "chronic Lyme" will make her crazy. And MORE exhausted. Lyme is only coming into 'accepted condition', but you are absolutely right. Lyme Literate MD's do remain "unnamed". They call themselves LLMD's, but very rarely accept insurance, cash only. They are really good at the prescribing plethora of antibiotics that are needed for all the co-existing bacteria that keep multiplying, but do remain "unnamed", for reasons as you stated. They can lose their license. Pretty crazy.

Lyme will come into being accepted and treated 'out in the open' eventually. The ground roots thump is growing louder as more and more people are demanding treatment.

But 'eventually' does not help those that are suffering in the moment.

Have your daughter try a different condition. Certainly she has co-mingling conditions contributing to her feeling so awful. Depression is one. Very understandable too.

[Pianomama]

It's sad that people who are so deserving of SSD cannot get it. My situation is not with Lyme disease but Alzheimers. My 62 year old DH was diagnosed in March of 2012. We immediately went to file for disability in the summer when my DH knew he would be retired from his work. The SS office said to apply the day after he stopped working. We did, and very soon after, my DH was examined by one of the SSD doctors and within a few weeks he was approved. I am very very thankful for that, as I know so many people have had such a terrible time getting approved. I really expected to have to fight for it. Certain diseases just get the pathway cleared much easier. When a person is so sick they cannot work, they deserve help. I'm so sorry for your family's situation and hope for the best.

[TRUE]

Yes I got it after losing my husband.....for anxiety and panic attacks. I had them previously. But I know someone who got it for chronic fatigue and she gave me the name of an attorney.

Unless a doctor says she cannot work or has been hospitalized in a mental facility you don't have to go through the dreadful process I did. She will be checked by SS doctors and most always is denied.....I was but this is where the attorney comes in and she will get it. It took a year but it is retroactive.

First get a doctor or two the more the better. Then call SS and set up appointment.

Remember she will never be able to work again once on it you can make up to a certain amount but most attorney's and doctors will advise NOT too as it can be taken away.

Good luck