posted
Horizon BCBS of NJ has finally cut my off oral antibitoics. I have been on and off for 4 years. Finally went to Dr. B last year and he found the Babesia in me. I had it so long I have a hard time getting rid of it. Anyway I challenged my insurance for my 2005 IV- they are letting me appeal it, however they put a block in the system to block all my oral meds. I was furious. I still have positive Babs tests and I also finally had a CDC positive Western Blot this year. And I have terrible clinical symptoms.
Anyway I would like to know if anyone has had this happen to them? I know I'm going to appeal and also right a Congressman in the district but in the mean time I want to get some answers. Without insurance my Mepron is almost a $1000 a bottle and my Bicillan shots are $500.
Does anyone know of a reliable discount pharmacy on line? I know GlaxoSmithKline makes Mepron in Canada so I was going to try that.
This is all really upsetting to me that they can go that far. Our family already is in debt because of mis-diagnosis, unpaid IV treatments, etc.
If anyone has a good brain storm for me let me know. Thanks!
Posts: 238 | From Bethlehem, PA | Registered: Oct 2004
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posted
Contact "timaca" on this board. She knows how to appeal!!!
I think you can find info in General Support...it might be on page 2 or 3 by now...keep looking or do a search.
I'm glad you finally got the proper dx. I found artemisinin to work very well for my babs. I never did take mepron.
Clindamycin/quinine and art!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
quote:Originally posted by Hides1:
Horizon BCBS of NJ has finally cut my off oral antibitoics. I have been on and off for 4 years.
Finally went to Dr. B last year and he found the Babesia in me. I had it so long I have a hard time getting rid of it.
Anyway I challenged my insurance for my 2005 IV- they are letting me appeal it, however they put a block in the system to block all my oral meds. I was furious .
I still have positive Babs tests and I also finally had a CDC positive Western Blot this year. And I have terrible clinical symptoms.
Anyway I would like to know if anyone has had this happen to them?
I know I'm going to appeal and also right a Congressman in the district but in the mean time I want to get some answers.
Without insurance my Mepron is almost a $1000 a bottle and my Bicillan shots are $500 .
Does anyone know of a reliable discount pharmacy on line? I know GlaxoSmithKline makes Mepron in Canada so I was going to try that.
This is all really upsetting to me that they can go that far. Our family already is in debt because of mis-diagnosis, unpaid IV treatments, etc.
If anyone has a good brain storm for me let me know. Thanks!
I'm going to send you again or perhaps for 1st time my newbie's links/advise. Timaca's link is in there on the great, detailed letter she sent her insurance co. to appeal.
also, there is something there about NEEDYMEDS, etc. Check it out ok! Bettyg
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bettyg
Unregistered
posted
HIDES, YOUR MAIL BOX IS FULL! Please delete as many as possible so you can receive private mail like I was going to send you below.
Anyone reading this, hit the END key now as I'm pasting 16 pages of newbie links/advise here !
Welcome to this 24/7 LYME support/educational group board! Updated 9-4-06
8-7-06 NATIONWIDE SUICIDE HOTLINE 1.800.784.2433 now please! If you are feeling suicidal, please call the SUICIDE HOTLINE. We care about you.
Before I forget about it, all PM, private messages go to YOUR HOME email address.. If you want to keep info, file it in your HOME FILE FOLDERS. I named my folkder, LYMENETFRIENDS, and file those I want to keep there! Lymenet PM allows 60 notes only & they add up fast; so delete them promptly from lymenet folder.
Make sure on ``MY PROFILE'' you edit it to show you ALLOW PMs so folks can send you a private email vs. On public board. Also change the viewing notes to VIEW ALL NOTES vs. 30-60 days only. Very helpful when you do searches on specific topics.
When posting and you decide you want to quote someone, please do NOT use the BOLD, which is automatic. It's so painful to my chronic lyme eyes of 36 years. To delete the bold when quoting; here is the procedure:
Click on ``'', beginning of 2nd line will be [/QB] just delete these 4-5 characters! Now the text will be normal print vs. Bolded! For the newbies, many of us have problems finding the ``NEW POST'' or ``POST REPLY'', which is at the TOP and BOTTOM of screens in a BLACK BOX with white print! I did. Thanks so much!
Do NOT post long, continuous text in blocks; we neuro lymies can NOT comprehend or read them ok! Break them up by hitting the enter button often, and leaving one blank line between each paragraph ok. Remember, many of us have had chronic lyme for DECADES, and it's gone to our brains. Thanks so much!
Read the FAQ, frequently asked questions, at the top under POST REPLY; it's 15 minute read, and has time-saving tips in there for all of us to use ok!
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!
Betty Gordon's LYME/TICK BROCHURE with LDA info plus other stuff from Betty including: lyme books, support groups, lyme/co-infection illnesses, symptoms, diagnosis, treatments, hunting/gardening ... how to dress; how to remove ticks, etc.
Also, see Cheryl''s extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-10 other illnesses that tick is carrying...lyme, malaria, etc. http://www.lymeinfo.net/lymediseasetreatment.html
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.
To all reading this: please take 5 minutes and sign the below online petition on the 2 bills in USA's CONGRESS asking for a special LYME/TICK-BORNE DISEASE ``TASK FORCE'' be created; NO $$ for funding; it's strictly ALL-VOLUNTEERS on this task force we are asking for!
If you go to www.lymenet.org `s ACTIVISM section, look for posts about S 1479 and HR 3427 that are in Washington, DC. There are links there where you can read the full bill as submitted. Please go there and check if YOUR STATE'S senators and house of rep have CO-SPONSORED each of the above stated bill nos.
When you are in there registering yourself, please ask your family members and close friends/relatives if they would approve your signing online their name, STATE, city is optional, to the petition. You will show YOUR email address, and confirmations will be sent to YOUR email address confirming you signed the petition. There is nothing else involved...no money, etc.
If you have any questions, please send me a PM, private message, and I'll get back to you daily about this project!
I'll teach you how you can streamline this if you are doing multiple family entries with majority of the same info WITHOUT RETYPING it all! Bettyg is my nickname on lymenet.
The petition will then be sent to congress to the committee who is holding it up now! It's been a long time in getting this far folks, please help us SUCCEED in getting lyme/tick-borne diseases discussed and acted upon in congress! THANK YOU ALL!
From HUMANBEING, Here is a link to help people get access to medication they can't afford...good information... http://www.needymeds.com/
Betty's ROLL CALL of MEMBERS WITH EXTREME SENSITIVITIVITIES TO LIGHTS, SOUNDS/NOISE, AND CHEMICAL SENSITIVITIES
mention you have lyme and marshall protocol, they will give you 20% off! I'm NOT on MProtocol, but mention it anyway. I was on their new board almost 12 months!
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.
]Driving daylight hours, be sure to wear DRIVING GLOVES and a LONG SLEEVE SHIRT/JACKET so you will NOT SUNBURN ! I got burnt bad on my 1st out of state trip to new LLMD in Minn.
I wear my darkest tinted RX sunglasses always with my NOIR wraparounds over them, and my floppy straw hat too; shields my face/side views
NOTE: Wearing sunglasses that BLOCK ULTRA VIOLET LIGHT, help to prevent CATARACTS. ******************************
Also if you get a SUPER WIDE post, go to the BOTTOM of the screen. Look to the left hand side and chose PRINT FRIENDLY VIEW or it's worded something like this ... on the same line as GO TO ______ section ...medical or general, etc. Carol in PA passed this along to me. I use it daily now
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! http://tinyurl.com/
3-1-06, FYI, I tried dragging tinyurl to my toolbar without success, so that's why I currently have LONG addresses vs. short tiny ones! I'll keep trying. ****************
RASH ITCHES -- use ``rubbing alcohol`` on it especially the corners good. Hubby suggested; worked great for me; rash cleared up in 2 days vs. weeks/month ***************************************
Colon problems; see www.celiac.com I discovered thru food allergy testing, I'm ALLERGIC TO: WHEAT/RYE as well as casein...cow's milk, egg whites, garlic, etc.
Lymetoo's link on Dr. C's explanation of western blot IGM & IGG ,16 band numbers and is DOUBLE spaced for easier reading! Thanks Tutu!:
from ANN-OHIO There is tons of good info at the site mentioned below,. this is the home page http://www.patientrights.com/index.html It was put together by a Michigan law firm and is one of the best I have ever seen ---------------------------------------
1. How many doctors did you have to see before being properly diagnosed? 112 responses Average number of doctors consulted before being diagnosed - 14 Answers ranged from 1- 120 different doctors
2. Have you had problems getting insurance to pay for doctors or treatment? 87 responses? Yes- 63 No- 24
3. Have you lost income because of Lyme disease? 106 responses Yes- 99 No- 7
4. How much does it cost you (average) per month for Lyme related expenses? 61 responded Average cost per month per patient- $4,472.49 Low- $500.00 High- $21,492.00
5. How many different medications do you take per day? 77 responded Average - 14 different medications per day Low- 3 High- 25 **************************
Bettyg's 4-20-06 new LLMD in Minn. Office visit summary, complete BODY lab results of 15-18 labs nationwide, all info the lab sent back about specific high/low testing, $$ costs involved, and what each test specifically involved what ... VERY DETAILED! I did this for other newbies who had NEVER had complete body testing like I did! Hoped it would give them guidance what they entail, how costly if OUT OF POCKET PAID, and which specific labs nationwide are the best for these SPECIFIC lab work.
---------------------------------------- SSDI, SSI, LTD procedures: Here is what I post for all on SSDI/SSI/LTD... I tried the link of the female MD ``template''; you are right; it's no longer good!
2 alternatives: use what I provide below as guidance since you have LYME disease and not filing for chronic fatigue.
OR go to the bad web site, click on REFRESH, and go to that site! Ask Mary, web owner, the question since she posted this on disinissues; SHE started that site! It was her close friend who okd to post her info for others. Betty Gordon
TRYING TO GET SSDI, SS DISABILITY INSURANCE BENEFITS OR LTD:
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 records, 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.
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!
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! ============================================
This message is sent upon subscription, and again monthly.
There are many more links, as well as advice and "useful" messages in the Files area of the website. Go to http://groups.yahoo.com/group/Disinissues and click on Files.
The website provides compilations 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, chronic fatigue syndrome, may apply to your medical condition.
The Welcome Message and Group Guidelines are in the Files section, 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."
Please let the moderators know if any links have changed.
Contact the moderators at [email protected] or for AOL subscribers: Click here
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! NO LONGER GOOD 5-17-06: http://www.cfids-me.org/socsec.html
************************************* 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, 2005 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.... *********************************
8-12-2006 from Connie Mc, lymenet.org
I wrote the following for my LLMD:
Guidelines for Use in Writing Letters/Reports in Support of Social Security Benefits for Patients With Tick-borne Diseases
By: Connie MS, CRC, CVE, CCM, from www.lymenet.org Disability Advocate
General principles of focus to consider when preparing this report:
1. The report/letter must have a longitudinal perspective that allows Disability Determination Services (DDS) to see the frequency, duration, and recurrence of major symptoms of tick-borne diseases. Medical records will generally show this, but a letter needs to state the general course of disability thus far, as well as the projected length of the disabling condition.
2. The report/letter must include descriptions of all treatment regimens and responses to therapy must be given; example:
oral antibiotics, and general response. Did this result in limited improvement, which necessitated the initiation of intravenous therapy?
3. The report/letter must include any significant restrictions the patient has experienced in his/her normal activities since the onset of the diseases.
Here, we are asking the physician to describe changes in lifestyle, such as: household, personal care, and social activities, as may be determined through history. Also, the physician can report any observed limitations; such as, walking, climbing, etc. as the patient functions in the exam room. A ``Incapacity Checklist'' can be helpful, and the physician can have the patient complete this for reference before the support letter is written. (A copy is at the end of this document). The patient needs to provide specific examples of limitations in function, which the doctor can document in the letter. The advocate can then obtain supporting statements from others (friends, family) to confirm what the patient has reported to the doctor.
4. The report/letter must report on any objective testing which has been done to determine the appropriate diagnosis. For example, any positive lab studies, and other supporting evidence such as positive SPECT scan results, positive findings of joint inflammation on x-rays, etc. Any testing which supports the presence of illness is acceptable. Includes the clinical examination, not just lab studies.
Once the above is established, the physician must then identify and describe the most significant and disabling symptoms frequently associated with TBD, tick-borne disease. For example:
1. Fatigue - the existence of chronic and/or recurrent debilitating tiredness, which is demonstrated by an inability to perform basic minimal tasks of daily living (ADLs).
2. Neuropsychological - the existence of forgetfulness and distractability, inability to concentrate, memory impairments, confusion, difficulty thinking, photophobia
3. Neurological - numbness and tingling, sensory impairment.
4. Pain - recurrent and chronic pain which significantly impedes the performance of ADLs and unrelieved by prescribed treatment.
Location of such pain and any objective findings utilized to diagnose the origin of such pain. This includes: chronic headaches and myalgia.
5. Sleep disorder - Any disruption of normal sleep patterns that is recurrent and does not respond to treatment.
6. Depression - Is depression primary or secondary? Is it related to the patient's reaction to the daily physical symptoms? Are there other psychiatric symptoms present which are apparent to the physician?
7. Cardiac - heart block, hypertension, and other cardiac complications.
Sample Letter
Re: DOB:
Please be advised that I have provided medical care for Ms. Blank since 5/7/2003. Ms. Blank carries a diagnosis of persistent Lyme Disease made on the basis of a number of clinical features, including: marked fatigue, chronic relapsing pain, CNS irritability, nonrestorative sleep and severe cognitive dysfunction.
This patient is disabled by incapacitating fatigue and myalgias aggravated by repetitive or sustained physical activities.
Her symptoms are consistent with her disease, which has been confirmed by positive IgM Western Blot in May of 2003. There is also evidence on examination of persistent disorganization of motor function as evidenced by peripheral nerve dysfunction.
She frequently becomes confused during discussion of treatment recommendations, and must rely on others to insure she has information she needs to proceed with recommended treatment. Ms. Blank has had marked impairment of her daily activities and finds it difficult to get out of bed on most days. She routinely requires assistance with showering and dressing. She uses a cane for ambulation. She cannot stand for more than 5 minutes to prepare meals, and must obtain assistance from others. She cannot lift or carry dishes or a gallon of milk. She cannot vacuum or mop or garden. She is unable to do laundry. She has difficulty managing her medication and must receive assistance from others to make sure she takes the recommended medications at the recommended times. She has difficulty getting in and out of a car and is unable to drive due to cognitive dysfunction.
Ms. Blank has been treated vigorously with oral antibiotics as well as supplements and other supportive care. There has been limited improvement thus far, and therapy with intravenous antibiotics is recommended for the near future.
By reason of the unpredictability of the frequency of her multiple physical symptoms, Ms. Blank has been totally and permanently disabled from engaging in, and more importantly, in sustaining any gainful employment activity, even light part-time sedentary work at home.
Ms. Blank's status has been consistent since I first began seeing her in May of 2003.
It is my opinion that she is likely to remain disabled for the foreseeable future, but, in any event, for not less than 12 consecutive months. Prognosis remains guarded and uncertain.
Sincerely,
Name: ____________________________Date: _________
Incapacity Checklist
How does your condition affect:
1. Your daily activities
2. Your ability to stand, sit or walk for a long period
3. Your ability to lift or carry weight
4. Your ability to understand, carry out, and remember instructions
5. Your ability to respond appropriately to your supervisor and coworkers
6. Other physical or psychological functional restrictions
7. Your ability to adjust to the stress of a work environment
Anyone who wants to provide this to their LLMD for use is more than welcome to do this.
I have used this same format many times and DDS and ALJs seem to be receptive to it. It includes all the information SSA is looking for to help them allow claims. Connie [ 14. August 2006, 12:00] ************************************* Bettyg
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posted
Thanks Lymetoo and thanks Betty. You people are wonderful ont his board. I will try and look for Timaca's postings on the appeals.
I'm just so outraged now. IF they had found the Babs on the beginning it probably wouldn't be so chronic. I think of you often Lymetoo how clinddmycin helped you right? I do take the artemesinin, mepron and biaxin or Zithro. I 've been taking it since last june 2005 with only a 2 month break(that's when I relapsed and it came out strong!)
I really have to try and do more reserach to appeal this. I have all positive tests!
Posts: 238 | From Bethlehem, PA | Registered: Oct 2004
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