I just found out I will have no more money for my treatment.
I can't get disablility and really don't have the stamina or brain power to get things together for any kind of public assistance.
I really don't know what I'm going to do.
I have no support, my family just thinks I'm nuts and refuses to do anything go help me.
They actually get upset whenever I try to talk about what's going on..and I am REALLY sick.
I can't believe everyone is just ignoring me and not concerned.
I haven't worked in over 2 years and what money I've been living on is running out.
I have ruined my credit in the process.
I really don't know what to do anymore. After more than a year of treatment I'm not any better.
My LLMD doesn't give me the feeling like he knows what to do with me either. He costs a ton of money and I feel like I get so little for it.
I went off abx and felt less toxic, so he's kept me off and has given me herbs for now.
The abx did nothing but make me feel even more sick. Can't say I ever herxed and had a benefit from it.
I can barely function and I don't know what to do now.
My brain barely works..I just do simple things all day and try not to lose it.
I read the thread on what to do if you run out of money for treatment, but figuring it all out would require a sharp brain and I don't have that.
Plus I feel so depressed and deserted. I just don't understand.
I need to get better and now it looks like that isn't going to happen.
Sorry to vent..I'm hoping someone might have some insight or good advice.
I really don't know what to do and I'm all alone in this battle. Thanks
Posted by bettyg (Member # 6147) on :
sarah,
have you applied for SSDI, disability insurance benefits for your past work experience?
were you turned down on 1st step, reconsideration, or finally after an admin law judge hearing where JUDGE DENITED YOU?
Posted by Dekrator48 (Member # 18239) on :
Sarah,
I'm praying that you will find the answers that you need.....
Posted by Lymetoo (Member # 743) on :
Keep reading! I know you're down and defeated now, but hope will come in the morning.
I think you could treat yourself with herbs until something better comes along. You could buy abx online too.
Why your family has abandoned you, I have no clue... but I'm praying they will wake up. Pray for them to see the light!
I'm so sorry this has happened to you.
Posted by daisyrlb (Member # 15686) on :
Sarah:
I'm, also, so sorry this has happened to you, especially that your family is not being supportive. It is a very hard place to be. You feel alone, but you are never really all alone.
I pray the LymeNet "family" posts will be an encouragement and also give you some answers to your questions.
May your mind be clear as you follow through one step at a time with what you need to do next to get well.
Just one baby step at a time. One foot in front of the other. You can do it. You were able to make your post for help--I'd say: you ARE a Lyme Survivor!
Perspective is often the little thing that makes the big difference.
I too am a Lyme Survivor.
Posted by kam (Member # 3410) on :
Sarah...just take it one step at a time and hold on.
things will get better.
Sometimes, it will take me a week or two to actually figure out what I need to do with the paper in front of me.
I just have to wait until that window of opportunity.
Then feel silly when all that was needed was my signature on the paper.
Still haven't been able to set up files to find the papers I need to find.
My family has not been there for me either. But, I am thankful for my lyme friends who have kept me going.
It is good you are doing what you can each day.
Pat yourself on your back for that.
Posted by Robin123 (Member # 9197) on :
Sarah - what about the possibility of reaching out to any social service orgs or community orgs to see if anyone knows of any community funding for people in need? There probably are people with money in NY who might want to assist someone.
Second, why can't you get disability? A social service agency might be able to assist you in getting something going.
Third, people are doing cheap treatments too. Salt/C is one of them.
Do you belong to a support group? I understand the herbal Cowden protocol was being offered to someone in each support group. I wonder if you could contact the Cowden people and ask them whether you could be a beneficiary of their program.
And take each "consideration" topic a little at a time, like look at something briefly, and come back to it again later in the day for a little bit again - just do it slowly.
Posted by Sarah182 (Member # 15774) on :
Thank you everyone..from the bottom of my heart!!
I was denied disability because I didn't earn enough credits. I tried a lawyer but they wouldn't take the case.
I've called just about every service I can think of. I'm surprised to find that there is so little offered.
I wish my brain worked good enough to figure something out. I'm so overwhelmed with it all...don't know where to start.
I'm afraid I will backslide..I need to get better not worse.
I just can not believe it costs so much to get treated...and especially that my LLMD won't offer any guidance or talk to me unless he is getting paid. Makes me more than a little upset.
Thanks so much again everyone. It's nice to know there is someone there!!
Posted by kam (Member # 3410) on :
Sarah..
I, too, was denied disability although I had worked since I was 16. it was due to going to college and just being at my current work a year and a half when this hit.
I contacted my state rep and got SSI and the state's insurance.
I also heard through word of month that I could get on the waiting list for low income apartments which I did.
Another lady I know was on a list for emergency housing...which I later learned and got a place.
She was dealing with CFS/fibro.
Sorry, this is more info than you need. It is just the way my brain works now.
As far as treatment...that is tricky.
My LLMD said he could help me with meds if I did not have the state's insurance.
I am thankful he is aware of this possibility.
But, I need to move closer to him in order to do this.
Just some ideas that popped into my head. Not sure where you are in your life.
I also went to a local church for food. But, learned that white rice, bread, sugar, etc made me worse.
It is scary loosing ones independence. Very scary especially when the health goes south too...especially the brain.
Give your brain some time. It will help you out when it is able.
I need to tell myself this too as I am making a big decision that my brain and body are struggling to help me out.
I don't know how old you are. But, I found the senior apartment complexes worked better for me than the ones with families.
They are much quieter and the people move and think..
I was going to say they move and think as slowly as I do.
But, that is not true. They move and think a bit faster than I do.
Senior apartments are allowed to take people with disabilities no matter what the age...that is some senior complexes.
Posted by Sarah182 (Member # 15774) on :
Thanks Kam I'm too young for senior housing, but thanks for the idea.
I don't know where to start with fighting for disability. I'm so worn out with all of this I can't think straight.
I guess I'll figure it out.
Thanks for all the advice..it is very appreciated!
Posted by PB4 (Member # 20799) on :
Sarah, I will pray for you. PB
Posted by aklnwlf (Member # 5960) on :
Don't give up on yourself Sarah! I had very little support also while going through treatment.
Just because our loved ones don't understand or believe how sick we really are doesn't mean that we're not fighting a real battle.
Be strong girl, and believe in yourself.
One thing I did during and after oral antibiotics and IV's was eating garlic and taking as hot a bath as I could stand as long as I could take it.
The hot bath thing is an old remedy for syphilis.
Something about inducing an artifical fever to stimulate the immune system.
Adding Epsom salts will also increase your magnesium which us lymies are low in.
Don't know if you have joint pain but cinnamon capsules help with that. I take 500 mg. 2 caps 2 times a day.
I take super Mag in the evening along with Tranquil Sleep to help me relax and sleep.
Hope these couple of tips will help.
I know for myself my biggest challenges are the inflammation and cns aggravation.
I'm still working on that.
Good luck!
Posted by liesandmorelies (Member # 15323) on :
Sarah,
I am sending thoughts and prayers you way.
You have gone through so much. Try to hang in there.
I am so sorry about your whole situation as it sounds all too familiar. I am hoping that someday soon there will be a better healthcare plan for someone like you and that there will be some kind of assistance for you and others in your shoes.
In the meantime try to get the best sleep possible, eat the best diet and take whatever supplements that you can afford.
This breaks my heart and I am thinking of you. Keep writing to everyone here as we all do care about you.
Posted by Sarah182 (Member # 15774) on :
You all are the best!! Thank you so much for all your prayers and support!
Putting people in this position is really criminal if you ask me. It's just so unreal.
I saw my GP hoping for some input but it really didn't help. He's been treating people with lyme and learning from me about the tests and things, but so far his patients have responded to abx very quickly. Even a woman with a cd57 of 24.
I just don't get it.
Thanks again everybody..I guess all I can do is hope for the best.
Big hugs to you all!!
Posted by Elaine G (Member # 20735) on :
Elaine
Posted by Melodymaker (Member # 16434) on :
Sarah, I am keeping you in prayer.
Have you checked with the Salvation Army for some assistance? If there is one not too far from you, they may be able to help.
Otherwise, everyone has given so much good advice I don't have much to add, except of course my prayers. A very powerful addition. =)
Posted by carly (Member # 14810) on :
Sarah,
I'm so saddened to read this!
I agree with Elaine, maybe a fresh set of eyes will make a big difference for you.
Maybe even your GP with a copy of the ilads tx guidelines (?) .
You've gotten some great input here. I can add my well-wishes and let you know I'm keeping you and your family in my prayers.
Posted by Sarah182 (Member # 15774) on :
Thank you again everyone!
I feel better with all the help you've given me.
I wish I could start over with a fresh set of eyes but with the cost of the initial consult I really see it as impossible.
As it is I think I may be able to squeak out one last visit with my LLMD and then I have no idea what I will do.
Believe me..I have asked and asked for ANY kind of assistance but came up empty handed.
I really do appreciate the help..thank you so much!!
Posted by MADDOG (Member # 18) on :
Hi Sarah,go to your county mental health board,tell them you are depressed. Usually seeing a psychologist is free if you have no income.
Request a case worker,they will go to job and family services for you and hopefully get you your food stamps and a little cash.
Allso you can get your winter electric bill paid,and a free phone.
I learned this the hard way.
In my case if i went back to job and family services i would yell and scream at them ,call them all kinds of names.
They will give me nothing till i sit in on a class called ohio works first.
IF I COULD XXXXXING WORK I WOULDENT NEED SS DISABILITY.
MADDOG
Posted by wtl (Member # 19883) on :
Hi Sarah,
Good to see you back here but sorry to be with this situation.
By talking to others, one thing I find useful in applying for disability is a neuro-psychological test. It makes any denial of your application much harder because the test nails down to certain percentages on disabilities in different areas of human functions. I find it is the most tangible report you can obtain in arguing your case. The physical disability is easier for them to deny your case because they can argue, even acknowledging your difficulty, that you could find a line of work that doesn't require the normal physical condition.
Lyme disease really is a neuro disease so concentrate on that. What really impairs you to not being able to work is your mind, not just your physical strength that no one can see clearly. It sucks one has to prove that they are so tired and have aches, and all the craps they are experiencing to someone else who doesn't have any of it, or nearly close to...
But if you have the neuro test report, they will have to argue with your neurologist if they disagree, instead of you.
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