Re: OT: I've been thinking..

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Hi Connie,I am truly sorry this terrible disease has affected your whole family... You are not alone, I've known of other families this has happened to also.. At least with a positive test, this does help you get treatments and just as important, gives you the opportunity of having a doctor oversee your health and hopefully progress back to good health. For some, it is near impossible finding a doctor even willing to oversee ones health once Lyme is mentioned.  Symptoms are the best way to dx Lyme, these tests are so faulty, me with 3 neg WB's and my wife with 3 neg Wb's, yet she was treated with oral and IV abx for just over a year (pulsed) and was cured of Lyme completely, this was 5 years ago. 

I think what happened to you about SSDI is very unfair... DON'T give up, you've paid for this insurance and being disabled means you are entitled to collect on it... When I was reading about your episode that happened at the time of the hearing, I immediately thought what perfect timing, this is exactly what you want something like this so the judge can see for himself what this disease is doing to you... Too bad he looked at this far differently, obviously a major lack of compassion and empathy. Did he know your whole family is affected with this?  I would think that would be very helpful, but who knows, maybe he would think that is impossible... Situations like this really anger me as I know just how tough living with Lyme is and don't understand why judges who have a responsibility to be fair just don't get it. The fact you looked sick and I am sure you acted sick should easily have been good signs to him that you are indeed very ill. You appear to already understand the " rules for recent work tests " here is a link that helps explain it..  

http://www.ssa.gov/pubs/10029.html#part2Good you are on the payroll and keeping your quarters current as you should definitely reload and work to get what is rightfully yours. In the mean time, document everything with your doctor, all the things you can't do and just how terrible you feel daily... AND, I tell everyone to always act like you feel on your worst day when going to see the doctor, attorney, etc because if you are having a good day and show up for the appointment looking and acting like Suzzie sunshine, your doctor will make a note you seemed fine... If you typically look sick and are sick, always let him see you this way, save the Suzzie Sunshine for when you leave the office... It was my wife who alerted me to my " good behavior " when going to see the doctor... I may complain all the way there I am feeling so badly that day, but when I see the doctor, I would always put on my best face and she said " no wonder he thinks your are feeling better... "  Now when I see the doctor, he has nothing nice to write about my health... Even when you win your case, SSDI does follow-up investigations which includes doctors notes and tests, usually every 3 years. BUT because SSDI is so busy and understaffed, now about every 5 years...  But the need to show your doctor you are still very ill does continue even after you win...

SSDI does want you to give up and many do because this is a long drawn out process, I am convinced of this... But for judges, they are impartial and don't share the same views as SSDI... But in trying to be impartial, many do slip between the cracks and don't get what is rightfully theirs and for some, this is going to be the difference between eating and not eating... Very sad.....  And what really bothers me about SSDI, 18 years ago when I was going through the process, typical time was 24 months and for me it was stressful just having to wait so long and documenting everything. Financially I didn't need to win at the time and I didn't know I even had Lyme, but I was disabled and thus entitled to this benefit and I wanted the Medicare benefits. SSDI had ads in the paper all around the country saying they were sending out agents to back allies passing out pamphlets to the homeless stating if they were addicted to alcohol, they were entitled to receive SSDI benefits... Amazing!  But for those of us really sick, we had to document our illness very well. A drunk only needed to prove he was a drunk... I never saw the fairness in this, not that they were entitled to benefits, but how easy it was for them to get SSDI.

http://www.ssa.gov/pubs/10029.html#part2I really hope you will reload and work hard to get approved for SSDI... Don't let them get away with this, Lyme is a terrible disease and many of us are well disabled... It might be best however to get a dx of one of the other illnesses that has more success for winning your case... I know a few years ago when the IDSA passed their Lyme guidelines, SSDI was deniing cases with chronic Lyme dx's as they said the IDSA claimed it was not a disease.   

Fight, fight, fight!  When you win, they will pay you back pay which will make it all worthwhile, plus you will be entitled to Medicare.....Jim  :-)

Re: I've been thinking..

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Re: RE: I've been thinking..

Hi Jim, 

Thanks for nice welcome. Well, unfortunately I have lyme and co's and so does my family. My husband and my daughter havetested positive and my son refuses to be tested. I know he has it he has too many sx. I gave it to them and I feel terrible about

that. I live in KY and it's not very prevalent so I'm sure it was transmitted sexually between hubby and I. Not sure who gave it toother though. I know that isn't a proven fact though but I 100% believe that it can be transmitted sexually.

 I did try to get disability. I tried for 3 years and went before 2 different judges. They both thought I was faking. The last time right

before I went in to see the judge, I had an episode where my leg wouldn't work. Couldn't believe it happened then but it did. I hadto have help getting in there to be seated. I was so embarrassed and in disbelief that of all the times for this to happen.

 He just thought it was all an act I guess. I could only wish. LOL At the time I only weighed 103 and looked very sick. I thought that

might help a little but no. I guess he thought it was part of the act. Anyway, for my own well being I just had to give up. It was sohard on me for 2 judges to tell me I was faking. That's what they want is for you to give up.

 We own a business and I am back on the payroll even though I do very little (make out schedule and some taxes). At least, this will

give me my quarters worked if I ever file again. I don't ever want to go through that again though. If I can get by without it, I won't. Yes, I so wish I had been on an alternative prior to stopping the abx. It wasn't by choice that I stopped though. My local dr moved

and I didn't have anyone to give me the shots. I have since found another great nurse practitioner willing to do it. I chose not toat this time though.

 Another long winded post. Sorry. Connie

On Tue, Jan 19, 2010 at 8:57 PM, Jim in Jax  wrote:

Well Hi Connie,

You belong if you have Lyme or are here on behalf of a loved one with Lyme, uh and of course you are breathing... :-)You don't need to own a rife machine to be here, just kick back and enjoy the group... WE are all here for each other... 

Testing positive for Lyme is like winning the Lyme lottery!  With that if you wanted,  you could get treated by the allopathics as so many will not treat without a positive Lyme test... So Congrats! So many have negative tests and

most doctors refuse to treat them for anything, not even their systems... Since you are not working, I hope you have considered or are on SSDI... Social Security Disability Insurance... 

For many Lymies, this is a lifesaver... The relapse you experienced after coming off of the abx is so very common.. It is always good to be using an

alternative protocol along with the abx, then when you stop the abx, the other protocol hopefully will keep the bacterial load down... 

Don't worry how your writing is, it is easy for me to understand... Actually, I break up my paragraphs also as itis easier for many to read... 

So now that you have made the " maiden' post, hope to hear more from you.... :-)-- Take care,JimSalt/C, EMEM, MMS ozone

Disclaimer: THERE IS NO MEDICAL ADVICE HERE!This list is the 1st Amendment in action. I am not an expert, I do share my many years of experiences and knowledge I have learned from others, both on group and privately. The things you will find here are for information and research purposes only. I am sharing information I believe in. If you act on ideas found here, you do so at your own risk. Self-help requires intelligence, common sense, and the ability to take responsibility for your own actions. Do not use any ideas found here without consulting a medical professional, unless you are a researcher or health care provider.

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Re: Re: I've been thinking... " I've been thinking " it's time that I introduce myself and tell you what I think of your group. First of all, I love this group just like it is. It's very caring and close knit and I like that a lot. I've been reading here for a while but since I don't rife I didn't know if I belonged. I was looking into it and haven't given up the possibility at a later time.

 Anyway, my name is Connie and I'm definitely not new to lyme. I've been sick since 1989 but was dx'd with CFS/FMS. In 2004 I finally found out about lyme and was tested and it was positive.

 I've been in treatment since early 2005 with abx. I've been unable to work for the most part of the 20 years. I'm much better but still not able to work unfortunately. In Sept.09 I went off my bicillin shots that I had been on for over 2 years and did OK for a couple of months then BAM!

 I don't want to make this too long so won't go into anything else other than the only thing I'm doing right now is AI. I think I read here where someone was doing it or it could have been another group. I just started it last week.

 I hope you can tolerate my broken up paragraphs, I have lots of neuro problems and have trouble reading one big paragraph so I always write like this.

 Thane, I have to commend you. You do a great job here with the group. You are a genuinely nice guy. I'm a very good judge of character. LOL 

Connie  On Tue, Jan 19, 2010 at 6:46 AM, malindabross  wrote:

Thane you are too kind!I am sorry too, if I sounded as if I was scolding.....definately not! God bless ~ Malinda

> > >> > > I've been seeing how our group has been morphing lately from one that keeps

> > personal chit chat to a minimum and focuses mostly on treating lyme to one that> > includes more personal off topic discussions and less about lyme. So I wanted> > to ask you all, What kind of group do you want? Because i'm not sure we can

> > have both.> > >> > > In a group that is mostly lyme information focused there seems to be higher> > quality information shared and new members feel less intimidated to join into

> > the discussion. And in a group where we act like old friends and feel free to> > talk about many things non lyme related we find more emotional support, which is> > just as important, but we can come across more cliche-ish, discouraging some new

> > members from joining the discussion and asking their questions. I guess I have> > always wanted our group to be a place where sick new members can find informed> > people willing to help and not have to sort through Off Topic posts that exhaust

> > their precious little energy. I'm probably not the only one who has noticed> > that we get very few new members asking questions anymore. And that to me is a> > tragedy because there are so many wonderful people here who could offer helpful

> > suggestions. And it seems its those new questions from members that spurs the> > very best lyme discussion.> > >> > > I want to reassure you that though I am the moderator of this group, it is

> > YOUR group, and its you who choose what you want from it. I am fine with it> > staying the smaller closer nit group we have now that enjoys the freedom of> > talking about a whole variety of issues if thats what you want, but just so

> > people understand that its discouraging some new members from joining the> > discussion.> > >> > > I of course still boast we've got the best group on the net! > > >

> > > Thane> > >> >> >> >> >> > Tue Jan 12, 2010 8:16 am> >> > Show Message Option> >> > " malindabross " <malindabross@ ...>

> > malindabross > > Offline > > Send Email > >>------------------------------------If your post is not about electronic devices used in the treatment of Lyme then please put an OT: in the subject line.

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