I am trying to stay calm--but I got so excited about all the YaYa stuff I called Senator Frist's office! I usually just emailhim and get a stock letter bakc--it's depressing. I actually called once...
I called today! The lady was very nice, listened about my support group, my sick kids, my doctor may be losing perferred provider status, bacteria causing heart problems too--YA YA YA--and she asked me to email her information!!!!!
She was really interested--she had read about Lyme disease in the paper!!!!
So ya'll have got to mail me the very BEST--THE BEST--scientific pdf files known to God--in english of course! Oh I am positively giddy! she said she would personally make sure Senator Frist got the stuff!
So please private email me and I will send you my email address.
This is so good!
Much love to everyone!
Linda
Posted by dmc (Member # 5102) on :
wow, great news...keeping hopeful. The only thing I can suggest is perusing the ilads website. Their basic info...2 pages is simple explanation. http://www.ilads.org/basic.html
I'm sure others lymenet members will come through with what you need.
Posted by dmc (Member # 5102) on :
wow, great news Keeping hopeful.
whoops, double post.
Posted by tequeslady (Member # 6832) on :
Way to go, Linda!!!! Maybe the tide is turning... So many things seem to be happening right now. This is GREAT!!!!!!!!!!
Posted by bettyg (Member # 6147) on :
Here is info from Cheryl's informaive site & personal experience of mine on the western blot IGM/IGG testing.
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 NOV. 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
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, etc.
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. Then when I "viewed" my complete SS records that DDS staff had put togehter, I was able to not read those submitted by me earlier since I noted I'd sent them.
Focuses on DDS drs./psychologists completing the RFC/MFC, residual & mental funtion capacity, plus any other evidence DDS created. I marked copies I wanted to copy & had to come bck another day to copy the limited no. of sheets.
REMEMBER: DDS/SS staff are watching your every move in the office & outside it.
. how you are dressed, wearing make-up, manicured/colored nails;
. how long you can sit/stand without moving about to stretch;
. beginning to squirm in seat;
. how light affects us lymies.
When I copes my DDS records, I had ALL the shades closed in there & even closed there 2 doors to the room, and had all lights off in there. Yes, they would check up on me now & then.
GOOD LUCK on your contadct w/Frist! We're really proud of your initiavie you've taken on behave of the entire lyme community.
Posted by Mo (Member # 2863) on :
Linda,
Great initiative!
Question -- has he responded or given feedback through his aide as to whether he will sign on to the Federal Bill?
S.1479 Title: A bill to provide for the expansion of Federal efforts concerning the prevention, education, treatment, and research activities related to Lyme and other tick-borne diseases, including the establishment of a Tick-Borne Diseases Advisory Committee.
Reminder to others, we should all be checking Phyllis' thread and getting Senators and House Members to sign on to the proposed initiative already prepared in our favor.
Also, I would check Frists' position and actions on healthcare in Congress in the past (and their effect, if I recall he was involved in the Medicare Act of'03?? I am unclear..but if so that should be considered IMO), just to get an idea of where he is coming from before sending him info, or to tailor the info to appeal to his interests/track record.
Maybe Ellen or Phyllis can help you with that. (??)
Mo
[ 09. February 2006, 02:47 PM: Message edited by: Mo ]
Posted by bettyg (Member # 6147) on :
duplicate post ... sorry
[ 11. February 2006, 08:36 AM: Message edited by: bettyg ]
Posted by Linda LD (Member # 6663) on :
I read the woman the senate number of the bill and told her I emailed John Duncan once a week. I kidded I was his stalker email girl because he knew my grandfather and is known to be such a nice guy...
That's all I know.
Any help would be appreciated--I gotta do some work work!
WOULD SOMEONE PLEASE MAKE SURE BETTY GETS SOME HELP!!?!?! I am really worried about her...
I wish I knew how to record this to a dvd from online. Does anyone here know how to do this? I'd like to send copies to my former Dr.s
Also, I think the info on www.lymeinfo.net is excellent.
Posted by vitch (Member # 8094) on :
Go to www.ILADS.org and use their position papers.
Posted by hwlatin (Member # 4123) on :
It is good for all of us to continue to write our congressmen and senators. Dont get your hopes up to much though. I have gotten responses from all I have written to and most of the time I get dumped off into the beaucracy.
Remember Senator Frist is a doctor, so his support might be tough in coming. Good Luck.
Posted by bettyg (Member # 6147) on :
quote:Originally posted by Linda LD: WOULD SOMEONE PLEASE MAKE SURE BETTY GETS SOME HELP!!?!?! I am really worried about her... Linda
Linda, thank you for your concern. After rereading what I wrote 1 day later....I can see why I shook ALL of you up. Not like me at all, but I was typing what was happening to me at the time ... so strange.
But I couldn't believe how this board pulled together not knowing my last name & city, and someone knew me so called someone else locally to have the police show up on my door step. Still trying to find out who the last person to thank was for calling police.
God bless this board of caring 24/7 members. I've never felt this much love from total strangers who give more than my family does except my beloved hubby!
![[woohoo]](graemlins/woohoo.gif)
Keeping hopeful.![[Big Grin]](biggrin.gif)