posted
Yeah so my ******* insurance denied me.... oh well looks like I have no chance at getting better now... Its just one thing after another.... NO IV, they wont pay for half my meds and I cannot afford any of them....
I am so sick on insurance dictating my health and my life
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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posted
They wont approve IV, Malarone, ZIth, Bicillin,,,, They wont approve ANYTHING... I am a wreck right now.. I just want my life back so bad... I am sick of being in bed, unable to function and unable to enjoy or care for my children & my fiance. I am sick of being so sick... I am a serious Mess...
This is not right... They just want me to die.
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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posted
I can not believe how hard this disease is. The symptoms alone are devastating, then the controvesy and non support from the medical community.
did you do an MRI or spec scan? Sometimes that helps.
Appeal! Ask if you can pay a percentage of at least the orals. ---------------------
If you changed to a doctor in ct. and I am not saying too as Dr. H is good. There maybe more leverage.
with blumenthal investing Inf D and insurance in that state.
Check on this for clarification< lyme with IV if recommended by a neurologist or internal medicine can not be denied. I don't know if that is for residents of ct, or ct insurance.
I am trying to figure out myself to go to Dr. R in NYC and possible loss the IV or wait 1.5 weeks to go to Ct. Neurologist and probably be able to keep it.
I hope your family can help the coordination, It is hard when you are sick.
barb
Posts: 167 | From USA | Registered: Jul 2008
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quote:Originally posted by barbarame: Check on this for clarification< lyme with IV if recommended by a neurologist or internal medicine can not be denied. I don't know if that is for residents of ct, or ct insurance.
[/QB]
Are you talking about a Lyme Literate neuro or just any neuro?? I've never heard of any neuros approving the use of IV for Lyme.....??????
Shandy, hang in there. You'll figure out something. Can you get scripts filled at WalMart where they are way cheaper??
and YES>.. appeal!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Shandy,
There is a LL Neuro in CT. I believe he treats Lyme aggressively. If you have a better chance of insurance coverage with a neuro in Ct Rx-ing then maybe he's worth a shot.
Let me know if you want contact info. I was thinking of seeing this LLMD myself but so far I'm improving (knock on wood) w/my current doc which takes insurance.
Posts: 2541 | From Northeast | Registered: Jan 2008
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Unexpectedills,
I see Dr. R and after 20 months of orals, I was sent to Dr. R who prescibed IV. I'm not even past the three week point of them, but yes, insurance denied us too.
We are paying out of pocket, but we are just blessed to be ABLE to do that. Most people can NOT. We are still fighting and appealing insurance.
At this point, not as much for OUR case, but more because of the principal and ALL lyme patients dealing with this.
I did have someone in the political scene over yesterday and is going to have someone even further up the ladder call and set up an appointment to come here to hear about this. Sadly, so many in the polical front have NO CLUE any of this is going on.
I wish I had advice for you, other than to NOT give up with insurance. They want us to give up and go away and we need to keep appealing and getting our letters out to ANYONE we can find that can make a difference.
My heart goes out to you.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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ByronSBell 2007
Unregistered
posted
Just because your insurance denied you IV's doesn't mean you can't get well... There are many ways to treat this disease.
The very first step to getting well is to build up the dedication to get well, and right now I don't see that in you.
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Dedication... Well I am a mom of two who is scared **** for her life... I have been to countless doctors, ALL of which have told me I have an autoimmune disease, OR that NOTHING is wrong with me...
I have been to 2 llmd's who have told me I have lyme based on my WB and symtpoms... symptoms which can be from ANYTHING. Any disease I am sure could have the same symptoms I have.
I am looking into a differential dx because I AM dedicated.. I WANT and NEED my health back, but you see I am bedridden and VERY sick, I mean I cannot even do simple things for myself or my chidren,, it is kind of hard to fight a battle against teh invisible, against something that doesnt have a name yet, and hard to do when you cannot move or get out of the house.
Just getting to a doctor is a serisous chore, and I end up so sick from it I cannot even hold my head up to speak to the doctor.
I have tested NEGATIVE for all co-infection, I have a IgG wb showing me I had a PRIOR exposure, and an IgM WB that is COMPLETELY negative. I do not recall a tick bite, A rash, or ANY illness previous to me giving birth to my daughter in 2007..
Actually before I got pregnant I was dancing, singing and acting on stage and.. I WAS a performer, going to college and living a normal life.... NOW i am nothing.
The only tick I recall was from the age of 12, NO RASH, NO ILLNESS... lived a very healthy life till I gave birth to my daughter and my life came crashing down.
I do not respond to oral abx , NO HERX, NO IMPROVEMENT
SO what am I to believe Byron? Where am I to turn, fighting an invisible beast with NO name?
I am in a fight for my life and I dont even what I am fighting and HOW to fight it.
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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posted
Shandy, your WB is very clear. Yes, it shows prior exposure, but it definitely shows exposure. You were never treated before. It is not uncommon for Lyme to show up later, even years later.
I have a similar WB to yours, and similar symptoms (previously, before treatment). My LLMD told me that I have Lyme, no question about it.
If it's not Lyme, what do you think it is? What other disease would cause these symptoms? What haven't you been tested for that you need to be tested for in order for you to overcome your doubts about your diagnosis?
Byron is right, you need to accept you have Lyme and be dedicated to treating Lyme so you can get well. Do what you need to do to convince yourself.
I lived very healthy after my many tick bites, from the age of 10 till 19. Then another flare up at 22, and another at 30 .... then not again until 40.
I tested negative for co's too.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Like everyone, I'm trying to find a way without antibiotics, but that seems to be working to some degree. Finances are running out and insurance can just do it so long. I feel for you and your situation. I've called the company for oral zithromax and they do have a financial department that you can get some of the meds at a lower cost. (That was about 2 years ago). I've done that before. Me and my son are on oral zithro, but 15 pill co-pay with insurance was $35.00. Maybe if you find out what meds are from what company, they can do something with a finance department. It's a scary place to be having a kid also puts pressure on you to be better, plus just feeling sick.
Be well and good luck.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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I'm so sorry to read about your insurance denial. I TOTALLY get the frustration - it's hard to stay positive and keep up the fight; this board is the perfect place to vent those feelings IMO, as we get it, completely. I also want to just encourage you to muster that fight back...it's one crappy roller coaster ride.
My WB was a bit clearer with some IGM Lyme-specific bands and positive on 3 co-infections, along with sporting a laundry list of Lyme symptoms. I'm 5.5 months into orals with little to no improvement and question any herxing as well.
I guess what I'm saying is...my case might be a little clearer as far as dx, but improvement is pretty much 'nil at this point. So, just because you haven't seen progress, still doesn't mean it's not LD.
If they absolutely can't find anything else...and I've read your symptoms in the past, I hope you'll keep fighting with abx to see if there is change. Please appeal your insurance. Is there any way that you could do another Igenex WB after halting abx for the short term to see if more + bands show at this point? I know some people do this...just a thought.
I'm so sorry about this, please keep us posted. Sending positive thoughts your way. TS
Posts: 566 | From West Coast | Registered: May 2008
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
i'm so sorry about your insurance denial, shandy. i feel for you and send you many hugs and much love.
i agree with six. please, please do whatever you need to do to convince yourself you have lyme. there is no doubt in my mind that lyme is what you are battling, given your test results and your history and symptoms. i know you've been told this before -- please hear it and BELIEVE it -- it is VERY COMMON to be completely, totally healthy for many many years after a tick bite and then some traumatic event (and yes, pregnancy & birth are traumas on the body) wakes the critters up and causes you to fall extremely ill, as was the case with you. i cannot even tell you how common a scenario this is when it comes to lyme.
please try to have faith. fight. trust your LLMD (he truly is one of the best there is). you will get better. it may take some time, this illness is not easy by any stretch of the imagination. but you WILL get better.
Insurance co and the state of Lyme disease care is terrible. I can relate as things are bad for me and I have children too. I feel almost panicked about getting well, not only to regain my life, but to give them their mother back. I think I understand your frustration.
A suggestion about meds (maybe you've already tried this?. Contact the drug co that make the drugs you need and ask them how they can help you. Explain your insurance won't cover, etc. Making multiple phone calls is hard but you will have to do this. This does work with drug cos.
Also if you have to pay out of pocket and you can, I know the IV co I use has a much discounted patient self pay program. I asked about it as I am anticipating problems with my ins. This IV co services the whole USA. They are very helpful. PM me if you want their #.
Someone else made a suggestion about Wal-Mart and I will add to that Costco & Walgreens. They both have discounted rx programs.
Hang in there,things will get better.
Posts: 262 | From nj | Registered: Dec 2007
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posted
Thank you all SO much for your words and encouragement! I truly appreciate it.
I do however need to look into further testing because for my own sanity and for a sound mind I need to be 100% sure that what I am dealing with IS in fact Lyme and co-infections....
I have way too many Odd tests that come back positive and they could be for various disease.
I seem to get a lot of the weird immunological tests that come back off... Like a positive ANA, RF, CRP ACE, HIGH immune compexes and complement... These are things that need to be looked into... and I need to know what is causing them.
Autoimmune seems the only logical thing with those tests.
SO in all I really havent ruled much out... I could have lupus or some other weird illness.
If I tested positive for at least ONE co-infection, it would clear my doubt immensly. But I have yet to.
Everyone here is going to say I have lyme... but that may not be true. The symptoms I have can be caused by MANY things... Many diseases share my symptoms. Its just getting down to the right one.
I dont want to keep treating something I dont have.. I dont respond to ABX... that a BIG red flag. Being on abx for no good reason is not healthy....
I have come to realize that not EVERYTHING can be explained by lyme disease. I was diagnosed last year with a very scary and incurable illness... and because I didnt want to have that diagnosis I went looking for another... I kept thinking about lyme, people kept saying lyme...but I always tested negative.
Than I found this site, and everyone said it sounded like I had lyme, and so... NOW I had a treatable disease and not a horrific incurable one... and than I learned more about lyme and realized that that was no better than the DX of Sarcoidosis and Lupus that I was given. Lyme is also horrible, and also INCURABLE.
So what do I have... I DO NOT know... but I ma no longer convinced that it is lyme. If I responded to abx, had a stronger WB, or tested + for a co-infection... I PROMISE I would NOT be doubting this...
I REALLY appreciate everyone here SOOOOO much... some of you have been so great to me!!
I think I have to get to the bottom of why I am so ill.. and if that means putting lyme and lyme treatment on the back burner for now, than that is what I have to do. I am the same off of treatment so I dont think it will be bad... I feel the same on and off meds... NO difference..
I wish everyone the best and hope soon I will find what is really wrong with me, and hopefully a solution.
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Good Luck Shandy. Truly, I hope that you find your answer. It never hurts to follow through on other tests that were abnormal.
And I agree w/ you, your inflamatory markers may be an indication of something autoimmune, esp. since you had several abnormal markers.
Just my 2, I'm not a Dr. and I am certainly not you, you know what is best for YOU.
Hugs, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
in that case, i can only wish you the best of luck. i, too, truly hope you find your answer. many hugs.
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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posted
Good luck Shandy. I feel in the dark sometimes and wonder if I really have lyme because I never saw the bullseye, and I never remember the tick or bite.
I feel for you and feel the same as you even though I've had a bit more clear DX. Its gonna end up costing me thousands of dollars and Im not 100% well yet. For a young man like me in times like this it is no picnic financially.
I have a question for you: what other diseases have you suspected? In your own research. I know you said Lupus. Anything else? Anything your docs have said is possible other than auto-immune which I feel is a weak dx that is made when there are no answers.
Let me know and I'll tell you what I know. I have a vast knowledge of other illnesses.
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
UnExpectedHills, I hope you find the information you're seeking. I also hope it's treatable as well.
I completely understand your concerns and feel they are very valid. Especially if you're having multiple abnormalities pop up.
I wish you the best and please keep us informed. It may be useful to go to a major teaching institution's Rheumatology department such as Cleveland Clinic, Mayo, etc.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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ByronSBell 2007
Unregistered
posted
Unexpected ills, can you tolerate hot tubs or sauna's?
One LLMD found that alot of his patients that got in a "hot" hot tub everyday for 30 minutes while on oral ABx, showed great improvement after 1 year compare to those that just did orals.
A sauna or hot tub is something 'free' you can do, all of the gym's around me have let me come in and do it without having to get a membership when they heard my story... There are still some nice people in the world.
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I'm in the same boat with 5 children and I own my own business in which I haven't been to for the past year. I find myself too sick to battle and spend the hours on the phone getting more and more frustrated because I'm dealing with a bunch of reps that keep transferring me around. So I finally requested a case manager and that has helped to some degree - also my LLMD will be doing a Peer-to-Peer today to let them know I need continuous treatment. They cut me off for the second time this week and then had the gall to tell me that anything and all drugs would have to be paid by me since they denied two weeks ago even though I haven't received their letter as of yet! I have a picc line already in place and they're not even going to cover having it removed!!!!! I'm hoping that my LLMD can overturn this ASAP, as I too am very sick and don't have the energy to fight - plus now I'm medication-less! Let me know how things are going and I'll let you know if my LLMD gets through to them~
Lots of love, Kimberly
Posts: 6 | From Ingleside, IL | Registered: Jun 2008
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jamescase20
Unregistered
posted
goldpharma.com sells bicllin IMs and there about 11-15 a shot.
ITs not the same spelling of biccllin but bezn...something.
posted
Thank you.. but I think I am taking a break until I find out what is REALLY going on...
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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quote:Serum samples from persons with disseminated or late-stage LD almost always have a strong IgG response to Borrelia burgdorferi antigens.
quote:recommended that an that IgG immunoblot be considered positive if five of the following 10 bands are present: 18 kDa, 21 kDa (OspC) *, 28 kDa, 30 kDa, 39 kDa (BmpA), 41 kDa (Fla), 45 kDa, 58 kDa (not GroEL), 66 kDa, and 93 kDa (2)
We know that there are plenty who have a positive IgM who have late stage, but my point in posting this, Shandy, is that even the CDC considers you to have late-stage Lyme.
I sincerely hope you do not stop treatment.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Shandy,
I also didn't crash until the birth of my daughter. My tick bites were between 4 and 6 yrs. earlier, also no bulls-eye.
I tested negative as well and I sometimes wonder if I have a proper dx. Also negative for co-infections but do have Mycoplasma and high EBV. My complement level is also low and my spinal tap had O bands which could mean MS and I have a lesion on my brain. Oh yeah, I also had a positive ANA.
I was also bedridden for several mos. last year and couldn't take care of my daughter.
I AM responding to abx though (knock on wood). So I don't know what my advice is or even if I have any but just wanted to let you know my story sounds very similar to yours.
I'm not 100% positive I have Lyme but think the abx are doing something. You did say you had a tick bite at age 12? You definitely could have been fine until a traumatic event like pregnancy and childbirth.
How old are you? I guess what I'm getting at is how many years between your tick-bite and birth of your daughter. Like I said, it took several years for me to crash.
I know anyone on here would say Lyme. I'm not saying that's the case w/you but you sure sound like me even though I'm not absolutely 100% either.
Posts: 2541 | From Northeast | Registered: Jan 2008
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I wish you the best and please keep us informed. It may be useful to go to a major teaching institution's Rheumatology department such as Cleveland Clinic, Mayo, etc. [/QB]
GAG!!! Please NO!!!
Shandy, take a break, but please come back to the treatment you need.
Let's say it's Lupus. Do you know what the treatment is for that? STEROIDS. You MAY feel better BRIEFLY on steroids, but then you will crash if it's Lyme as your test shows it is.
We care, Shandy. We don't want to see you suffer needlessly.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
also, i just want to say that as frustrating as it is, sometimes it takes awhile to respond to abx. you've only been in treatment for a few months, if i'm right? that is not nearly enough time for many to see a substantial response. patience really is a virtue when it comes to this illness.
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I didn't know my suggestion was so bad. I was trying to offer help for a professional Dx on other issues.
It would be like telling a lung cancer sufferer to ignore the best possible treatment for this condition even if another co-exists. How can anyone be sure what another specialist would recommend for treatment and if it would be detrimental to the Lyme condition?
I'm not guessing / questioning the Dx. I am not informed enough to do so. Sometimes ruling out other issues at credible places it necessary. You can't have peace of mind without this.
I am concerned about 5 positive IgG bands and two positive IgMs. I missed that at first due to reading too fast. That's hard to ignore.
Not all non-Lyme doctors are bad! This is coming from someone who has little faith in Western medicine anymore too!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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quote:Originally posted by evergreen: I don't know why people are trying to "convince" Shandy over and over again when she's seeing a top-notch LLMD.
Support is great but perhaps everyone should let HER decide what she wants to do and let HER and her doctor decide their next step.
Because we're afraid she's going to stop seeing her top-notch LLMD who diagnosed her with Lyme! He is not taking new patients, so to stop seeing him could be bad for her.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
quote:Originally posted by heiwalove: also, i just want to say that as frustrating as it is, sometimes it takes awhile to respond to abx. you've only been in treatment for a few months, if i'm right? that is not nearly enough time for many to see a substantial response. patience really is a virtue when it comes to this illness.
Ditto a hundred times over...
It took me a year of treatment to notice real progress in my health. And now that I'm a little past a year, I'm able to more notice my progress, but I still have good and bad days.
This disease really does take patience... Most people don't notice real progress until a year or longer into treatment. It's sad, but true. That's just how it is for everyone who's been infected for a longer amount of time.
And I'm worried about you losing your LLMD too, Shandy.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
Seekhelp... All I'm saying is that I've seen MANY people from this board over the past 8 yrs who went to Mayo, Hopkins, CClinic, etc and they spent a LOT of money there....
all to be told that they don't have Lyme...but "we don't know what it is that you have."
Go home and learn to live with it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Yep, I'm one of them. I know all too well. It's not fun. I feel more confident with the rule out process, but fortunately I have insurance and didn't incur much out-of-pocket expense.
It would've been a whole different ballgame otherwise. I see your point as well.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Just talked to someone in my hometown...... similar to childbirth setting off lyme.
She had lyme undetected for 1-2 years. She got pregnant and everything ok. As soon she gave birth, the symptoms came out. She had pain, unable to walk, fatigue, severe memory issues.
With treatment she is better and it took 2 years with a combination of orals and IV.
I also want to add, that I have been very healthy too. Last year was stressful and pow, I have really bad symptoms starting in Feb. 08.
FIght to get rid of this horrible disease.
As others, Financially, we will never be the same either but do all that you can now in the beginning to kill the germs.
take care. barb
Posts: 167 | From USA | Registered: Jul 2008
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