posted
Help! after 7 to 8 years of fighting more than one lyme infection, losing many many days of school and lots of other things a kid should enjoy, my then 14 yr old daughter was put on 2 mos on IV rocephrin followed by 3 mos of oral... she felt better for a time (as she has so often over the yrs. Sick a few mos, Better a few mos.)
so we thought we had a pre-cert for the treatment in LLMD office. we thought most of it would be paid for. After a year of back and forth and finally exhausting the internal claim, this is what we have been told:
"the internal phys consultant concluded there was insufficient evidence to substantiate a valid med need got IV (my abbreviations)
"..the duration of IV excessive and not in accordance with generally accepted med prac"
reviewers questioned: "diagnosis"
our MD is one of the authors of ILADS guidelines.
we think we would like to fight this -- a suit under ERISA --
any ideas? any experience? we have 45 days to do this!!!!
oh - and to add to this -- the rhuematologist (who works where Fallon does) she saw this week says after all those antibiotics, the spirochetes are surely dead and now its just fibromyalgia (FM) or Post-Lyme Syndrome.
-- and on the media issue -- the TV MDs are too cautious and will go with the most likely suspects, like Steere, et al -- or other conservatives. "Be careful what you ask for..."
-------------------- mom & co. Posts: 31 | From ny | Registered: Feb 2006
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I can't help with the insurance ... I was lucky my company paid.
I am only a lyme patient ..... but my opion is that that fibro and post lyme syndrome is BS ...
If someone has cancer and you give them 4 weeks of meds and they still have the same symtoms would you suddenly call it something else because they had a lousy 4 weeks of meds...
Of course not... it doesnt take a rocket scientist to figure out that they still have cancer and need more meds...
Yet with lyme it seems like most drs. are willing to throw all logic out the window label you post lyme or fibro and be done with you......
washed their hands clean of the risk to their liscense that you would pose as someone who needs long term antibotics.
It infurates me so....Ive been there... but now I have a great llmd....
That is what you need a great llmd...... and if your insurance co wont pay for abx you may be able to qulaify for needy meds.... I know the website is somewhere on here try to do a search for it.
I am 29 now but I have had lyme since I was 10 yrs old so I know how tough it is to be a kid and deal with lyme symptoms.....
Just so you know I went undiagnosed untreated for 13 yrs then i had some inadequate treatment and tons of complications... From what I have seen it usually does not take as long as me to get better
Your daughter can get better and get her life back to normal with treatment under the care of a good llmd.
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Jons, keep fighting them. Get your docs to write letters, you write letters and have your daughter write a letter too.
Let her tell them in her words how sick she is and how she can no longer do teenage life because of her illness. Have her tell them how there is something really bad in my body and I need help getting it out.
AZURE, great analogy with the cancer.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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MagicAcorn
Frequent Contributor (1K+ posts)
Member # 8786
-------------------- Posts: 1279 | From In hiding | Registered: Feb 2006
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bettyg
Unregistered
posted
Jons, WELCOME to the board. So sorry to read of your fight with insurance co. & most of all your daughter!
I'm going to copy/paste a bunch of my own collection of personal goodies here for you...some do NOT apply to this, but I'm short of time, and this will get you going on what you really want! ok.
When you see TREEPATROL'S NEWBIE LINKS, click on it & print the entire list of links so you have an idea of what all is in there.
Look for MINOUCAT'S disability/INSURANCE links!
You mentioned ERISA lawyer, etc. Sign up for the DISINISSUES, disability insurance issues, TODAY for membership! Now go to the links/files there, and read the topics thoroughly. Go into the threads looking appropriate for what you want.
Then post a note to the board. Copy/paste most of your post there. (Read moderator Sarah's policy on this; it's educational only...NO indepth personal stories, chit chat, etc!)
Sarah Shapiro, moderator, reads ALL posts before they are posted where she sends out as she approves. If she disapproves, she sometimes sends you a note; other times; no note.
Anyway, 2 ERISA lawyers read/post there and give some BASIC, brief comments there!
This is a NEW area for me personally; no experience on my part for you!
Good luck to you Jons.
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.
Extensive info in Treepatrol's newbie links about the meaning of WESTERN BLOT IGM/IGG test results from Igenex! Be sure to read or print this info IF Igenex tested you ok!
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.
from LOU to Betty on LONG web links and Thank You Lou!: "If you hit the return key in the middle of a link, I don't think it will be clickable anymore. An alternative that maybe Betty should be telling people about is the tiny url website. I have it on my tool bar at the top of the page and use it for those incredablylongwebsiteaddresses.
All you have to do is ask tiny url to produce a short version, which it will do with a unique address, which you then use instead in your post. Works just the same when clicked! Here is the website, spread the word!
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.
I ordered the NOIR sunglasses. If anyone access my wrong email address for this, my sincere apologies to you! I typed from memory; wrong thing to do with brain fog.
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.
posted
hello -- while i am new to the site, i am not new to the disease info. However, all of the responses are more than wonderful! will read in detail when i have time to really concentrate on this. have found good info from other postings as well. stick with it gang!
remember to send those cards and letters to your reps and senators in DC as well.
our insurance quest is -- that even if we see no more money -- we want to make waves that become a Tsunami!
j
-------------------- mom & co. Posts: 31 | From ny | Registered: Feb 2006
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bettyg
Unregistered
posted
revised my NOIR web site address; I did it my memory and totally wrong! If anyone printed out this info, please correct it with the correct email found at the bottom of my post. Thank you.
If anyone went to it earlier, my apologies for the wrong site.
Added info on the 2 types recommended to buy and the 1-800 no. as well.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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