Hope everything is OK......I read your post on the fibro board...they are getting a little nuts over there...but people like you can help so much you should just blow off the rest.
I had a really bad week ...it was crazy...al of a sudden i woke up and felt terrible...it lasted about a week to ten days... my symptoms come and go but get really bad for about a week. I cant figure it out.
At any rate let me know your good...we can exchange emails if you want.
Lesley
Posts: 120 | From NB Canada | Registered: Jan 2006
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EtherealGirl
Unregistered
posted
Hi Jill,
I read your post over there as well. I'm sorry that you didn't feel respected. I must have missed the nasty posts. In any event, I hope you are okay.
posted
Hi guys Im fine , I just feel that this is the board i need to concentrate on to finish my jog to the finish line. I was tired of the lyme politicing there, and i had held out as long as I could, there are many there that will carry the torch and pass along the information on lyme there are some very lyme literate people there.
I hurt me more then anything that I just couldnt help those either in denial, or not educated, and when others come in and bash the current and accurate information it is like so many steps backwards.
there are many intelligent people there, they will perservere and many will get to the bottom of their illness, not all of them have lyme/co-infections, they all just have to realize that they are their own best advocates, and they need to keep on keeping on til they find out what is really wrong...
thank you both for your support im glad your here, there is just so much information here, its the place to be with lyme...lesley we will get you there... (lyme brain did you get diagnosed finally or still waiting)? im sorry...you can pm me I will send you my personal e-mail adress that woould be great..thanks again guys...Jill
Posts: 83 | From Northern Illinois | Registered: Feb 2005
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posted
Hi Jill, Glad to see you here! Those were some irritating posts about lyme on the FM board. That one named Laura really got on my last nerve, haha! Oh well, I'll live. How are you feeling? I am about as sore as sore can be. Anyway, I just wanted to say thanks for all the info you did pass on over there on the FM board. Take Care! Kellyann
Posts: 8 | From usa | Registered: Feb 2006
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Don't let it get to you. Take a break from there. That's why I don't go there often because from day one I would get totally bashed.
But, it doesn't matter, don't take it personally. Someone, reading all the stir will take interest and be helped. You were one!
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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posted
Jill - Hey, I'm Meowchowchow on the other board. I'm sorry to hear that you left. I missed your goodbye post. I got really upset too after reading all the negative posts too.
What surprises me most is people who themselves have been diagnosed with CFS or FM, and I'm sure have had a lot of skepticism with that diagnosis could act that way towards Lymies.Especially that one person, I don't know what his problem is.
I have to tell you that YOU are the most important person to me on that board because you're really the one who planted the lyme seed in my head, and pushed me to get tested. Our symptoms are so similar. Thank you for all your help.
I'm on this site a good deal. Meow/Cutie
-------------------- Cutie Posts: 125 | From Atlanta | Registered: Dec 2005
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EtherealGirl
Unregistered
posted
Well, I'll be here a lot more now. I got banned from the FM site yesterday for posting my goodbye letter. Not a healthy site, that's for sure.
IP: Logged |
It's me, karatelady. I frequent this board a lot more than Immunesupport.
I get too aggravated at those posts and need to spend my time more wisely than that.
I do like to answer sometimes when I feel it may help someone check for lyme but, anymore, there's so much on lyme I'm sure everyone is reading it.
I love this website. The whole flavor is different. Much more informational and a lot less bickering. Everyone is so nice and knowledgable too.
Also, people on here seem to want help and to find answers instead of having pity parties and living with a diagnosis of FM/CFS without finding the root cause.
Its nice to see you all here ~~~~ Sandy
Posts: 686 | From Northeast Georgia | Registered: Sep 2005
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posted
I agree with you all about the fibro board.
It seems like a lot of them just want to stay sick, I will keep posting there about lyme because someone did that for me! I learned alot over there but get so sick of touching a nerve.
I am sure we will see them over here before it is over!!
Love to you all, Dani
-------------------- Dani Posts: 102 | From Where there is no lyme | Registered: Jan 2006
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I'm also from the other board. Thanks to all of you for sharing so much information about Lyme. I am just trying to figure out this new world of Lyme. I'll come here to look for your posts and continue learning. I will stay on both boards as I need lots of help and want to get better. Thanks again.
Posts: 12 | From Florida | Registered: Jan 2006
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posted
Hi, friends! I'm another refugee from the FMS board... so good to see your familiar names over here! Like so many, I would have believed I had "incurable fibromyalgia" if it weren't for the lyme-literate folks over there (thank you!!!) -- now, I'm on the road to recovery.
I, too, don't understand the hostility.... we (cfids/fms/un-dx'ed-lyme) are all in roughly the same boat -- sick, suffering, and being pushed around from duck to duck, told we can't be cured...unless we finally advocate for ourselves and our good docs. It makes no sense why we would turn against one another....
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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posted
Hi Everyone! Glad to be here where we are wanted. There is quite a bit of info here that I am busily going through. I loved the story about the spoons by someone named tincup, I think? It pretty well discribes a day of my life for sure! Glad to see all of your familiar names here! Like old friends, haha! Kellyann
Posts: 8 | From usa | Registered: Feb 2006
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posted
hi guys Im so glad many of you found your way here and were able to find help on the other board that lead you here to find more help here, apparently the post was erased I dont know why, and i was also banned from the site which is too bad i did find some information there helpful, but this site gives such a load of helpful lyme information and if ya have lyme....i guess thats the information you need...
I do feel so very sorry for those who have not yet found a diagnosis, be it lyme or whatever, and mostly for those who have accepted FMS and CFIDS, there is something causing those symptoms they are real symptoms, and i hope truely the best....
meow (cutie) i am so glad we were able to help you get the correct diagnosis your are so on the right track now...IMO the FFC waited way to long to test you from the get go I would check everyday to see if your results were posted...
I have learned so much from this site (have found very wonderful contacts, and most importantly found my LLMD who I am eternally greatful for)....talk to you all soon I hope today isa good day for you... Jill
Posts: 83 | From Northern Illinois | Registered: Feb 2005
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janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
Hi everyone,
I haven't posted for a while cause I am getting better and back to a real life. I took abx for a year then jumped to rife and mild HBO in Nov 05 and have been making real progress.
Can someone please post a link to this strange FM board where folks are banned seemingly without reason-just for writing info??? All bits of info are needed. Banning is for those who are exceedingly rude or vulgur, isn't it?
janet
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
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Banned too. So the ones saying goodbye because of negative posts get banned. I wonder if the real negative people got banned that were against Lyme.
Oh well, glad to see you guys and look forward to sharing with everyone and making new friends here too.
Been in a flare all weekend, will have to ride it out.
Nice to see you guys. Michele
Posts: 106 | From Texas | Registered: Jun 2005
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janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
Just to amuse myself (bored tonight)I posted about Lyme over there-let's see what happens!
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
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posted
hey all, I realize we are a bit off topic for the medical board
but you all crack me up, and your support has meant a great deal....I wonder too who else got banned...i am so sorry if i caused it for you guys, as you all and your knowlegde will be truely missed there as well
fogged up you were really an ally there and i appreciate it...lyme is and will remain a controversial topic i just wanted to open some eyes there...appparently I did...maybe thats a good thing in a way as I understand it many people got to read many of our posts before they were removed and we had tons of Lyme literate information...
I never meant for the controversy and i actually thought my post was a well wishing good-bye....I hope many of those in denial will wake up..if any of you saw the map they were plotting on our whereabouts, they were mainly in the Lyme endemic regions..the coasts, the midwest texas folorida and canada....
Im glad were here...lyme and its treatment will remain controversial but staying well read and well educated and learning from the many here who have suffered the same is a healthy way to move on with our health and life..thanks again stick with it we will get these little buggeres (i mean the lyme LOL)....lots of good health...Jill
Posts: 83 | From Northern Illinois | Registered: Feb 2005
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charlie
Frequent Contributor (1K+ posts)
Member # 25
posted
Is that the site that Tincup and Sarah and all them got 'banned' from?? I just checked it out....it's nothing but a glorified ad.
Posts: 2804 | From Texas | Registered: Oct 2000
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Wow, I'm surprised you've all been banned.
I'm even more surprised I haven't been banned then as I would have thought I might have been their biggest 'offender' over the last couple of years, 'evangelising' about Lyme.
I did get a warning once when I first started, but that's it.
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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posted
This "fibro board" sounds pretty useless- posts with any value get snuffed out. I wonder if this board has a, UM, "Steereing committee" packed with aquatic waterfowl? That is, it's funded by the same jerks that are persecuting LLMD's? Just a possible theory.... I hope everyone is making progress. Sometimes Lyme can be beat- but it's no piece of cake like the fibro f'rs insinuate! If it weren't for Lymenet, I'd a had ...'fibromyalgia'... for the rest of my life, which probably would have been over by now! DaveS
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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posted
Hey all, I am about as neutral as it gets on this subject.
I always thought I had cfs/fm until I was talked into seeing an llmd. He told me I had lyme and I started treatment. I have been on abx, oral and IV, for 10 months and have not felt a thing! I report to them everytime I feel real bad and they say its a herx even though I had times before I started abx where I felt the same way. Go figure.
I really find it quite funny that you all think those on the fibro board are rude and offensive. In just a few post that I have made on this board I have had people get upset with me for not double spacing, quoting, and was called a troll for questioning my dx. I am a member of several boards and have found this site to be the rudest on the web!
We are all sick with similer symptoms. You can call it cfs, fm or chronic lyme disease, call it what you want it is all the same. They have no more proff that chronic lyme disease exsist as they do cfs/fm. There is no doubt that lyme exsist but the chronic form is another story. This being said does not mean I do not believe in it! I am just stating the facts.
There are a lot of people who would love to see an llmd but cant because they are very expensive and no one accepts them.
I have been to the fibro board and find the people there to be very nice. A lot of people there have a lyme dx. and all of them get along very well.
There is no mixing here, throw one person in that thinks he/she was dx'ed wrong and really has cfs and you all beat that person like a bunch of bullys. That is what I call narrow-minded.
Posts: 208 | From Greenville SC USA | Registered: May 2005
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posted
As for ordering the Igenex test, usually, I think, people get it through their docs. But I think they do have a web page where you should be able to find out more. DS
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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posted
For all of those that got banned on the fibro board, maybe it was something you said. Being rude to others. If so you will fit in real well here!
Posts: 208 | From Greenville SC USA | Registered: May 2005
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posted
Now wait a minute-- I don't see any "bully like beating" going on here! As for me, I'm about as un-bully-like as they come. But I'm not too happy about my experience with lyme, which would not have been the ordeal it was if I had received a longer period of treatment at the outset. As I have said, I hate taking drugs of any kind (except maybe an occasional drink or smoke), but would have gladly put up with it for longer if I knew I could avoid all that suffering I went through as a result of not having a longer treatment, and treatment for co-infections. I just don't want to see people go through what I went through, being told they couldn't have Lyme becauase the short term abx didn't cure them! And the ignorance (disguized as 'controversy") in the medical profession is inexcusable! DaveS
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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EtherealGirl
Unregistered
posted
I was banned for posting a pain study. I was told I broke the rules, even though there is nothing in the rules about posting clinical trials and studies. I think they make them up as they go along.
I was never rude on that board to anyone. I was mostly there to learn about SSDI, and support those who were fighting for it.
I was completely blindsided when I got banned. But I think it's a blessing in disguise.
I've been thinking that I don't really have Lyme Disease. I was fibro-brainwashed. It's good to be back here and to get the info that I really need.
IP: Logged |
janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
Not only has my post been deleted-it said most FM/CFS may be undiagnosed Lyme-I have been banned too- Here's a copy of what I found when I tried to log on today:
Message Board Login Please fill out the information below:
Due to rule infractions you can no longer login to this message board.
Username: Password:
Returning Members: New Users please:
Need your password? Click Here.
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
It seems like my two threads from yesterday havce been deleted on there. They were simply information threads, with many medical abstract references on the link between CFS/FM and Lyme, and another similar one. Both gone. I can't imagine how that could be offensive to anyone.
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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posted
Wow, guys -- I'm just waiting until I, too, get banned over at FMS.... guess that is just a matter of time! I suppose the information threads could have been deleted because they were considered a "debate" -- that is AGAINST THE RULES!!!! G-d forbid we actually engage one another in an intellectual discussion -- it might upset someone!
Apparently I still have access to the board for now, and a lot of folks are very sad that the Lyme-literate folks are leaving. I suppose it will be up to them to come on over here if they want more information.
Bothrop --- I'm sorry you felt bashed here about questioning your dx -- I read that thread, and I agree there was a "bashy" quality to it... I thought so, too, when I read it. I don't blame you for questioning your dx -- if you don't feel the treatment is working, keep searching. I hope you do find answers and a road to recovery, whatever that means in your case.
As for the other board... in general, people are very nice and very supportive. There have been a few real exceptions recently...
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
A debate is a discussion, is it not? That is what I meant by 'let's keep the debate going' on Lyme.
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
| IP: Logged |
posted
Hmmmmmmmmmmmm Did Bothrops say they were neutral on this subject? I think not. It is only considerate to double space for a lymie as we CAN NOT read and process long drawn out paragraphs.
Should we appologize for this? Heck NO! This is what we live with. For anyone to bash another human being on any board is inexcusable.
We are all here for the same purpose, to get help! Some of us choose to take advice and some of us choose to live lives of ignorance.
I personally will do anyhting to get myself and my daughter well from the hell of lyme, no matter what the cost,as long as it is not our lives that is the cost.
Negative energy is not for unhealthy people,we just don't need it. So I encourage everyone to post where you feel comfortable. Sometimes you will come across an idiot and sometimes you will come across exactly who you need.
I have experienced people who have combatted my positive thoughts and tried to turn them negative... I have learned to let it go and apoplogize if I have misled them. It usually always works out.
I think this site is one of the most informative with very helpful people. And it is true for all posting sites, the healthy ones do not come as often as the sick ones. That is just the cycle whether we like it or not. Peace to you all this evening.... I still like it here!
-------------------- I'm gonna get that lyme !!! Posts: 61 | From Erie, PA | Registered: Dec 2005
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bettyg
Unregistered
posted
Wow, so this is where all the newbies came from lately.
I would like to ask you folks to help us neuro lymies here though:
. short paragraphs of 6-8 lines of text;
. DOUBLE space between each paragraph;
. if you use the " ", please delete the bold marks that look like this [/QB]found at the top after the quote in brackets & at the END of the quote.[/QB] Delete them both with the B in them.
. Bold hurts many of our extremely sensitive eyes which are made worse when we are on doxy, antibiotic.
. We have several members who have nearly lost their eyesight, so some of us use the larger font print for them to be able to read.
Botrop, if you feel I'm rude; so be it. We each try to contribute to the board here, which I have done.
I do not apologize for asking for help and cooperation from other lymies whose health is NOT as bad as ours since the lyme invaded our brains.
I read the majority of the posts and people were asking about western blot testings KIT (you don't need a kit but their specifics!).
Go to Igenex site & print off their REQUIRED FORM; it will have what the blood lab needs to use which they do have on hand! IT'S PREPAY also. Call for their current prices!
Someone wanted SSDI info. You'll find info on both & more stuff that I combined for newbies.
Treepatrol's newbie links are the best.
Welcome to this 24/7 LYME support group board! Here's TREEPATROL's and tincup's combination newbie links.
Print off the links then check them off as you read as you could spend several months reading all of this.
print & read Dr. Barrascono's 2005 info first; you will come back to this often.
Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-12 other illnesses that tick is carrying...lyme, malaria, etc.
If you are showing symptoms of co-infections, I would like to suggest being tested for co-infections when you have LYME western blots done. It isn't cheap!! But if you are positive, you can treat the co-infections first, and then work on LYME symptoms.
TESTING FOR LYME DISEASE ... 3 main LYME TICK BORNE LABS IN USA!
The WESTERN BLOT IGM & IGG blood test nos. 189 and 188, are the only accurate tests for LD. They should only be sent to these 3 USA's Lyme testing labs:
IGENEX LAB: 797 San Antonio Road Palo Alto, CA 94303 1.800.832.3200.
(If the early test, called IGM, is negative; the later test IGG is NOT done!) Please see their web site: www.igenex.com CALL for their current prices effective OCT. , 2005 and
to print their REQUIRED form, which MUST be signed by the doctor, DIAGNOSIS CODE NO. COMPLETED!; Medicare's UPIN no., and your blood taken EARLY in the week so it doesn't sit in post offices! Example, have it taken Mon. - Wed. Afternoon tests show more positive lyme results!
Here is the site to PRINT THEIR REQUIRED FORM to send with blood sample. For me, I printed the FIRST option available on the forms.
Write on their forms you want results FAXED to their drs. Office; snail mail paper copy so it's not lost like mine was!
NON-Medicare patients must PREPAY by check or credit card for the tests since they do NOT handle insurance papers. Medicare patients do NOT have to prepay!
2. MDLabs from NJ, www.mdl.net see their site; they too require their own form. NO prices are listed; you must call their 800 no.
3. BOWEN labs from Florida, www.bowen.net 727.937.9077 You pay $250 tax-deductible payment for testing, and they send you a picture of what shows up in your blood. You also get the results within 24 hours after the blood is received at Bowen. They are also a 501(c)(3) lab and you can take the donation of $250 off of your taxes if you live in the US. They fax the results and then about a week later send the actual pictures. Lyme should be diagnosed clinically using medical history in addition with the Western Blot blood tests as no currently available test is definitive in ruling-in or ruling-out infection with Ld pathogens, or whether these infections are responsible for the patient's symptoms.
NOTE: Please send a copy of your health insurance card to YOUR insurance comany (mine is Wellmark BC/BS, Iowa) for them to submit to BLUE CARD (handles other states) them to FORWARD to California's Blue Shield health insurance company since they will require that, DRS. Diagnosis Code No., and which date of service is correct (IGX has 3 different dates on their paid receipts....use the DATE OF ACTIVITY!).
FYI - mine was returned to me after 6 wks. After submitting; dr./blood lab failed to show DRS. DIAGNOSIS CODE NO. on their form! It went to 7 people to be returned to me! Disgusting! ==========================================
IF YOU ARE TRYING TO GET SS DISABILITY INSURANCE BENEFITS
Hi! I know what you mean about memory & typing, etc....it's the pits!
I do suggest you join the FREE DISINISSUES and read thoroughly or just print it all off of the FEMALE MD with chronic fatigue, etc. she gives wonderful, detailed examples that DDS, disability reps, want to approve/deny you.
Also have you looked thru the ADULT APPROVED LIST OF IMPAIRMENTS? That's critical also!
note 1.04; look at the rest of the 14 other specific areas too....
I printed off 1-14 sections showing what brief guidelines were for each section. I used that against ALL my medical reocrds, 3" thick!! Then I went to their DETAILED specifics for the sections that applied to my illnesses!
TIMECONSUMING....TOOK ALL 7 WEEKS from my notice of my ALJ hearing date!
So you have NOT submitted your INITIAL APP TO SS OFFICE, correct? Good, you want this to be as complete as possible so they can NOT turn you down on the 1st step as they do us all!!
\============================================= What I did with an online friend was this: prepared a chart noting the specific section of 1 - 14 that my diagnosed illnesses showed the wording, dr. seen & date.
Example, 14.09 LYME disease is mentioned in but doesn't give any examples. So I showed 14.09 with my drs. name & date plus specific details about each visit where lyme symptoms were stated..
I hope you have a copy of ALL MEDICAL REPORTS...drs., xrays, all blood labs.
It's critical that you KEEP A COPY FOR YOURSELF! ================================================
On mine, I showed the date mailed to ALJ & LAWYER PLUS I kept a copy. Then I went to copy center nearby & copied and mailed promptly to lawyer per his request.
WHY THIS IS IMPORTANT: if you have an ALJ hearing, request thru your local SS office to REVIEW your complete SSDI app at THEIR local office! When you see things you submitted with your writing on, don't look at them!
Look & read only the secretative RFC & MFC done by the the in-staff DDS DRS/PSYCHOOGISTS! You want to make copies of ALL the stuff they have & other stuff you don't have so you can use that info against them!
ACTIVITY DAILY LOG, ADL link is: http://f4.grp.yahoofs.com/v1/oHfvQzZLYvcfvmUv V4L_ayW4_l5PFECbH9UA2BR_YfE66JZ0ZSxttbcO7NZqu HpjUfnUxG9wWuH7WPXAzrR7YqCnrsO80V5hSxJwduQ/ Activities%20of%20Daily%20Living%20questionnaire
At moment, can NOT find MFC questionnaire, but look at site on links/files. It is there but not visible to my eyes presently.
NOTE: I'D DO THIS DIFFERENTLY NOW! SEND 1 COPY TO ALJ and 1 to your lawyer! Lawyer did NOT SEND MY REPORTS TO DDS STAFF PROMPTLY; they didn't see many things when they denied me although I had good medical info!
Examples, 2 RFC, residual function capacity done by PCP dr. of 26 yrs. & rheumatologist;
plus 2 MFC, mental function capacity, done by psychiatrist & psychologist.... the 1st person was the one judge used in APPROVING my 2nd claim for severe depression/effective disorder & anxiety.
ALJ's don't like working with LYME, FIBRO, CHRONIC FATIGUE. MENTAL is on approved list of adult approved impairment list! So don't fight it, go with it!
================================================== IF YOU ARE TRYING TO GET SS DISABILITY INSURANCE BENEFITS ======================================================= This message is sent upon subscription, and again monthly. Please let the moderators know if any of the links have changed.
There are many more links, as well as advice, in the "useful" messages in the Files area of the website. Go to http://groups.yahoo.com/group/Disinissues and click on Files.
BETTY NOTE: Look at the female MD's DETAILED BACKGROUND right below this paragraph. Print off her detailed responses as to why she could NOT do her job, and then apply that to YOUR own job as to why you no longer can do any type of sustainable work now nor in the foreseeable future!
These links are a compilation of several areas of interest which are commonly requested and mentioned. They reflect the collected wisdom of this group. Check them out - you just might find the information you were looking for! Take a look at Files that are not specific to your situation, because they might be helpful anyway - what works for Social Security may work for LTD claims, what applies to CFS may apply to your medical condition.
The Welcome Message and Group Guidelines are also in Files, if you need a refresher on how this group works.
You must register with Yahoo to use the website, but note: Be careful not to permit your address to be put into the directory when you register. Put as little as possible into your public profile. You do not need a Yahoo address to use the website. Your email address is what Yahoo calls your "alternate address." Contact the moderators at [email protected] or for AOL subscribers: Click here -----------------------------------------~--> Disinissues website - http://groups.yahoo.com/group/Disinissues
DO NOT FORWARD ANY MESSAGE FROM Disinissues WITHOUT PRIOR WRITTEN PERMISSION FROM THE AUTHOR Do not distribute any member's email address.
NO MESSAGE ON THIS LIST IS TO BE CONSTRUED AS LEGAL ADVICE --------------------------------------------~-> Yahoo! Groups Links To visit your group on the web, go to: http://groups.yahoo.com/group/Disinissues/ To unsubscribe from this group, send an email to: [email protected] Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
An online friend of mine from disinissues web site posted this info today, so I have copied it over here.
Subject: fibro/CFS disability info [Disinissues] what does an Functional Capacity Exam entail?
Lyme, fibro, & CFS support group members who are/will be filing for SS Disability insurance benefits, please go to the web page shown below.
There were 9 pages of info I printed below area where you can order from fibro network a 70 page packet. I too plan on including this info when I send my FINAL packet of info to chief alj before my June 16, 05 hearing...my last chance! =======================================
Please read the site mentioned on: WHY DISABILITY TESTING FOR FMS IS OFTEN MISLEADING ADVICE FOR FM/CFS PATIENTS AND THEIR DISABILITY TEAM.....
Also after this article are the following articles:
WHAT COULD BE CAUSING DELAYED-PHASE FLARES?
BENNETT'S METHOD FOR ASSESSING FUNCTION IN FMS..
TECTONIC CHANGES IN DISABILITY LAW by lawyer Joshua Potter, CALIF.
MEDICALLY DETERMINABLE IMPAIRMENT REQUIREMENTS FOR CFS & FMS
DOCUMENTIONATION...VIEW IT AS AN INSURANCE POLICY
I printed this out in larger print for my eyes....9 pages! Will read it thoroughly
and mark up 2nd copy to go to ALJudge for my 2nd hearing as medical evidence also....
EYE SENSITIVIES & NOIR, no infrared sunglasses info., 2-26-06 updated
YES, I have what you have! Are you on doxy too? That made my extreme eyes 200% MORE sensitive than they we were earlier.
I learned a lot about eye sensitivity/lighting on www.marshallprotocol.com board. Look for AUSSIE BARB'S EAST FINDER and then eyes/sunglasses, etc. Wealth of info there.
You will need 2% amber and 10% amber ... Style no. 901 and 910.
1-800-521-9746 TOLL- FREE mention you have lyme and marshall protocol, they will give you 20% off! Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service?
I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be, etc.
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Wow, thanks for all the info, Betty!
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bettyg
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e girl, you are more than welcome. That's why I copy/paste from my word processor for newbies or others needing specific info I have personal experience with.
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If any of you newbies, printed off my links/comments, I want to make you aware I made a big error on the NOIR sunglass web site; it's totally wrong.
So if you did print it off, go to my EDITED version now to the bottom of my long post, and print off the portion about
eye sensitvities, NOIR sunglasses title and copy that portion the rest of the way down.
Correct web site is shown along with their 1-800 number, and the 2 style types recommended for us taking doxycycline. Thank you.
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