posted
I was misdiagnosed for 18 months. Finally had a western blot in Nov 2010 came back with 10 IGG bands reactive and 3 IGM bands reactive.
I did 2 months doxy and over 30 days of IV ceftriaxone. My doctor put in for an extension of IV infusion and insurance has just denied the extension.
They said it is not medically neccessary. That I do not meet he criteria!
I now have 8 or 9 positive western blots because doctors just like to keep testing me. thinking my blood may have been mixed at the lab.
I have 2 coinfections bartonella and rickettsia.
I have the CDC calling me and telling me I am positive for other things that I know I am not. Because they are false positives... Confirmed by my doctor.
I also have had heart disease my whole life. I had surgery on my AV node in 1996. I am going for more tests this week to make sure lyme has not damaged my heart more than it already is.
HOW DOES THIS NOT MEET CRITERIA?
Frustrated and need some direction. I have already contacted my district senator and they did say they will help in getting this appealed for me. My doctor also submitted an appeal.
Any other suggestions?
-------------------- Diagnosed 11/29/10 10 bands reactive IGG 3 bands reactive IGM Posts: 46 | From Mass | Registered: Dec 2010
| IP: Logged |
I found that in the quick links above... there may be more info there that is helpful.
Keep fighting because I think you have a very strong case.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Keep appealing it with help from your dr and senator, etc.
There is another not well-known way around this. And insurance co's don't want you to know this, and won't tell you. You can buy the rocephin (or whatever rx) and supplies out of pocket, say from Infuserve America, where it is relatively cheap. Then, you have Infuserve bill your insurance co under major medical.
Usually the insurance co will pay. You may well have to get after them to acknowledge the claim, and to process it correctly. But after a couple of months (less if you are lucky), they will usually pay.
This isn't a guarantee, but it often works. You know why, I think? Because if they denied this way too, they'd be liable if you sued them!
Get the insurance issue of Lyme Times from CALDA. It is worth it's weight in gold. It will help with the appeal process.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
posted
Infuserve America is the cheap source of IV abx that I know of, and they will get as much money from your insurance company as possible.
I've been so impressed with all the compassionate people who work there.
If you have the energy to appeal with the insurance company, definitely try, but with the IDSA guidelines to back them, I have not had much luck.
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
| IP: Logged |
I am finding out today if the appeal went through or not. I am extremely anxious and scared.
My home nurse just left, she said her entire office knows my name and are pulling for me.
Also said that they have more lyme patients now then they EVER have. And I do meet the criteria more than some of the others getting iv infusions. And most of those patients have it indefinate.
I have spoken to 2 other state representatives. 1 of them is personally effected by this. His son has lyme.
There is a new bill being put forward in MA and hopefully approved. They want to open a research facility to prove that long term treatment is necessary to cure lyme.
They are going to share my story as well.
Here is the article I read which made me contact him.
posted
I am so sad right now. As soon as I hit add reply my phone rang...
INSURANCE IS STILL DENYING ME
-------------------- Diagnosed 11/29/10 10 bands reactive IGG 3 bands reactive IGM Posts: 46 | From Mass | Registered: Dec 2010
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
You can also file a complaint with your state's Insurance Commission.
I did this online regarding the extreme rate increase I received.
I got a quick response, to my surprise, and received a rate decrease in one month.
I was assigned an investigator and have received 2 letters from them so far.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
I've just been reading about how to file insurance appeals and get independent review in Massachusetts. Is that the process you used?
My child's IV rocephin was denied after 30 days by UHC. I have not appealed yet, since we were just denied this week.
We can't afford this for long, since I will have to go on IV soon too.
racer
-------------------- Me - Igenex: IgM: 41IND, IgG: 39IND, 41+ but Plasmid PCR Positive Kiddo - after 1 year IV - positive Lyme culture (before IV: IgM:31,34,41,83-93 IND; IgG: 41+++, 66+) Posts: 133 | From CT | Registered: Feb 2011
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Another important thing, you said:
I have the CDC calling me and telling me I am positive for other things that I know I am not. Because they are false positives... Confirmed by my doctor.
Uh, if you tested positive for these infections, and the CDC is telling you that you have them, you have them! It doesn't sound like you have a Lyme Literate dr! Or at least not one who is up on all the co-infections.
This is a big deal. You need someone who takes it all seriously, and who knows how to treat them all.
And don't give up on keeping on with your IV treatment; you don't want to lose whatever gains you made.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
posted
I am very curious as to what infections you think are false positives and how your doc proved that. If you are producing antibodies (which it sounds like you are fortunately) then I am highly skeptical that the tests were actually false positives.
What labs were used and what were the test results? This is very very important. Different infections require different treatments and you will not get well unless all known infections are treated.
It is possible that IV's for one of the other infections might be covered by insurance if they will not cover the lyme treatment.
BCBS has told hubby that that insurance company considers babesia to be a life threatening infection for example.
You need to request copies of all paperwork involved in the claims denial process and be sure to also request the guidelines for lyme treatment and also for each of the known infections. They probably will not want to provide the treatment guidelines but I am pretty sure they are required to do this by law if they denied your claims.
Good luck and don't give up fighting for treatment.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
posted
The CDC called to confirm lyme and I don't even want to say it the "s" word
The lab that did them was within the hospital. I guess there are 4 parts of the test they do and the final is the confirmation that you indeed have it and mine comes back negative.
They also found bartonella and rickettsia bacteria.
I was on doxy for 2 months before being put on the iv rocephin. I did 5 weeks of the rocephin. I still have the line, did my last dose yesterday.
I am looking into keeping my line and buying it on my own. My doctor is not in today so I hope on Monday she will say yes you can do that.
I guess my question is can she tell me no that my line has to be pulled? What do I do then?
-------------------- Diagnosed 11/29/10 10 bands reactive IGG 3 bands reactive IGM Posts: 46 | From Mass | Registered: Dec 2010
| IP: Logged |
Don't know any details regarding your insurance policy. But this is what has worked for hubby. His insurance has a $5000 annual cap on prescriptions. They do not care what meds are prescribed. His doc writes the scrips as follows -- Rocephin or whatever IV antibiotic we are using, also IV tubing, IV bags and 10cc needles.
The antibiotic scrips we get filled at Rite Aid or whichever pharmacy has access to the correct meds. Hubby gets the insurance discount price and the insurance company pays the copay of 60% until he uses up the annual $5000 allowance. The scrip is processed just like any other scrip.
We get boxes of 100 needles thru the drugstore as well.
The IV tubing and IV bags we order mailorder from Medhaus. I mix all the IV's myself -- we have never had home health care. I also do bandage changes 1 or 2 times per week.
Hubby has had a PICC line for 7 years now. At first it was used for IV Ativan -- none of the seizure meds they tried worked.
Just because the doc wants the IV line pulled -- it would be up to you if you followed those orders. Of course if they want it pulled and you don't do that then most likely the doc will fire you as a patient -- some states require a 30 day notice before firing a patient.
Will your PCP take responsibility for the line? Your LLMD might be agreeable to that.
Currently our PCP is the one who actually writes the scrips for the IV meds although at different points in time it has been done by a couple of LLMD's as well.
One doc wanted hubby to have the nurse check his IV line weekly and change the bandage -- our PCP did that for a month and then said he didn't feel that was nexcessary -- we could just go back to doing that ourselves and let him know if there were any problems.
I honestly don't think you will get your insurance company to change their minds about the continued IV treatments. According to their guidelines it doesn't matter that you are still symptomatic.
But they might cover IV Rifampin or IV levaquin for the bartonella -- don't know the guidelines on that. If there is cardiac involvement you could argue that it is due to bartonella and maybe get those meds covered that way.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
posted
OK just got off the phone again and pretty much an argument still.
Doctor said that my white blood count is still low. She is afraid of me getting an ifection and is going against her beliefs in me keeping this picc line.
What do I do? I know I have to find another doctor. But do I let them pull my line until I see a REAL LLMD?
-------------------- Diagnosed 11/29/10 10 bands reactive IGG 3 bands reactive IGM Posts: 46 | From Mass | Registered: Dec 2010
| IP: Logged |
posted
How about we move this to Medical.. you need more help!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
chiquita incognita
Unregistered
posted
Surely if the CDC itself is going so far as to call you regarding your own medical care, this is the grandest violation of the US Constitution itself, let alone of your civil rights.
I have never heard of such a thing except in Red China. This case goes beyond mere insurance harrassment et al. It's government intrusion that has to be addressed at this point, head-on too. With the right kind of help. Courageously, and in the sunshine of the open air.
Seems to me this is discrimination against lyme patients and those treating it. It's also a violation of the right to the pursuit of life, liberty and happiness. (I am not an attorney, just a layperson thinking out loud).
It sounds like your Senator is on your side, and you were very smart to call them. GOOD! that's heartening FYI, that they are helping you.
If things don't work out as you would wish... but let's hope that they do, sounds promising so far....
I would contact civil liberties organizations such as (but not limited to) the American Freedom Agenda, the ACLU or the Center for Constitutional Rights. Try also the National Lawyers Guild. See what they have to say. Ask for legal advice even if they don't end up representing you themselves. But they would be foolish if they did not. They may want the publicity. At least, they also want to know that this kind of stuff is happening on the government level.
They would not take on medical cases. The only reason I am suggesting it may be appropriate in your case, is because the government itself is calling you in your own private home, regarding your own private health management. No matter how well meant their message, the very thought of government intrusion in our health matters is scary! And inappropriate, to say the least.
Suggestion: Don't talk to the people who screen the calls and refer them to the lawyers at the civil liberties organizations. A lot of them may be ill-informed and just not "get it".
Just go directly to the legal department. Talk to the horse's mouth...the lawyers, themselves.
Another idea:
Write a Buyer Beware message and post it to the internet. Tell people what this insurance company has done, on your dime. Tell them to boycott the company.
Tell them to contact the CDC and Congress (who also is working on our dime, we've got to remind them and people of that) to object to this unconstitional intrusion into *your* health care. Stress this point: If they do it to you, they will do it to others too. Let's not be innocent about this, please.
****Grant reprint permission in writing, and ask readers to forward it widely all over the web.****
They will if you ask them to and grant reprint permission, written on the top of your article.
Contact radio stations, dial in to TV talk shows, and contact online radio stations. Ask the latter especially to print an exposee by you, because the underground is more likely to do this than the mainstream.
But then again you never know. The mainstream loves to be the first to break news, and if you contact them with a case such as yours, they may very well be jealous and want the publicity. Because they want to be the first and have the reputation of breaking a story, they may reject stuff that has already been posted to the internet. I suggest trying the mainstream first before you give up on them and go underground.
Go for it!
There is a power in groups rather than going solo. Class action lawsuit, anybody? Maybe it's time.
IP: Logged |
chiquita incognita
Unregistered
posted
PS After getting an exposee printed---or even just a letter to the editor---I would print it out and send a copy to the insurance company and the CDC.
Let them know that their heinous attempt to commit murder has been publicly exposed.
I would couch it in no softer terms than that, and publicly too.
Let them "apologize" to you by coming through with payment. After all, it's their business which will be on the line, if publicity is wide-spread enough.
Idiots! They are sticking their own foot into their own mouths.
Join the Nullification movement to nullify the unconstitutional health mandate, over our own pocketbooks. Let's face it: that bill was a health *insurance* mandate, not a health *care* mandate.
Further, any government mandate over our own spending choices is by definition unconstitutional. Let alone one which actually fines us and maybe even jails us if we fail to comply. Isn't that tyranny?
I suspect this behavior on the part of the CDC is very much connected to that mandate. These tyrants in office---whom we are paying while they abuse us, on our dime-----is very much connected to the passage of that bill.
They are just getting too bold.
It is time to reign them in.
Nullification of the mandate by the States may be the way to go.
FYI I am all for health insurance for all. Truly and please don't get me wrong. Further, I have noticed that those countries which themselves foot the bill for the healthcare of The People (citizens and non-citizens) are much more protective of human health where environmental legislation is concerned (ie chemical management) and where health prevention is concerned.
Makes sense, doesn't it? Again I have noticed this, as a pattern.
The government should not turn the bill over to us. The government should be responsible to pay for our healthcare...and all hands off!
USA out of my body, NOW!!! "Health" insurance scam profiteers, out of my body, NOW!!!
Cough it up, buddies, you are being paid to take care of our health, not *only!* to stuff your own fat and greedy pockets.
Those who leave medically ill people even more vulnerable are violent criminals and murderers. Let's call a spade a spade, and *glare* at them right in the eye!
They rightfully, legally and morally ought to be jailed.
posted
PS I found it heartening to hear that your Senator is on your side, several in their office had family members with lyme and other things to engage their empathy...and that more and more lyme cases are being diagnosed now.
In fact, I wanted to share that while shopping around for health un-insurance (guaranteed), I was told by several of the insurance companies' representatives that they are seeing more and more lyme diagnoses.
Good!
I am sorry to hear of people being ill, but I am indeed glad to hear that it is being recognized and diagnosed with increasing frequency.
That fact just may very well be on your side.
Lots of other facts in your case seem to be on your side.
Chin up!!
You keep us informed what is going on. Let us know how we can help or be of support.
IP: Logged |
I think you are over reacting. I would be very happy to have the CDC call hubby. Because he does not have a positive on the right test he is one of the many thousands of uncounted lyme patients.
The only numbers that matter to the government are the # of lyme patients that get reported with positive test results. And the only way to get increased funding is for those numbers to keep going up.
Yes, the system is seriously flawed, but without some record of the number of diagnosed lyme cases the CDC will never take these diseases seriously. I really wish that bartonella and babesia were also reportable diseases in all states also -- but then again hubby does not have positive test results on the correct tests to be counted for those diseases either.
keepsmiling,
The real problem is that even if insurance approved your rocephin it is not a magic bullet and there is no way to know if it would put you into remission.
I actually wish we had stopped the rocephin after 4 months rather than continuing for 7 months this time around on hubby. He got no additional benefit from the extra treatment and it was just extra cost. Not sure where to go from here with his treatment but that is another chapter.
It is highly probable that the bartonella may be what is suppressing your immune system. Personally I think it would be a good idea to treat the bart before continuing with heavy duty IV treatment of the lyme. The first time hubby did IV Rocephin for 2 months 7 years ago it was of very little benefit because he had not treated bartonella at that time.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
keepsmiling2010
concerning the s:
It can be false positive for people with lupus and other diseases, so please do research ... this is well known and you should find information online.
CDC should know that, it often cross reacts in lupus people and I am sure your autoimmune system is a problem when you are so sick, you need to test the ANA.
The spirostat test can do a PCR of it and that would help you if it just cross reacted.
Posts: 1834 | From US | Registered: Oct 2008
| IP: Logged |
karenl
Frequent Contributor (1K+ posts)
Member # 17753
there are many articles when you google false positives...
Don't worry, this a well know fact and wait till you have more detailed PCR testing. They should have told you. Hope you feel better after reading.
Posts: 1834 | From US | Registered: Oct 2008
| IP: Logged |
chiquita incognita
Unregistered
posted
HEllo Bea et al I can certainly understand the *fact* that it's important for the CDC to have statistics about lyme, or any other illness. For now, especially lyme since it must come to the spotlight and be mainstream-accepted as a reality. I not only don't argue that, I agree 100%.
What is frightening to me, however, is the thought of government going so far as to get involved in our individualized, personalized care. What we may or may not do. That's the beginning of the road to control.
We may not realize it at first, because it starts in small and seemingly innocent ways. But as they say, give one inch and they will take a mile. I think we may be setting ourselves up for a big surprise, an unwanted one, as we allow the government to intrude into our personal lives and our personal medical journey.
There's a difference between keeping statistics and telling people what to do with their own bodies.
IP: Logged |
posted
Good Morning I have feelings toward both sides.
I don't like getting unexpected phone calls to my home and cell phone from the Public Health Dept because they received notification from the CDC and my doctors office that I have positive tests. Then proceed to tell me that I need to notify any sexual partners! That is what makes my blood boil.
For 1 I have been with the same person for 10 years and know my honey has never cheated on me. And not for nothing I shouldn't even have to actually say that to someone I do not know.
I have contacted a couple of attorneys for medical negligence but they are unable to take my case because lyme is such a hard disease to prove anything. Even though I have very positive tests.
My doctor called me again on Friday night and told me that she does want my picc line pulled. My echo results did show change in my aortic valve. I have to schedule an appt today with my cardiologist.
I guess my valve has become more calcified and the opening is narrower than it was before. I have had aortic stenosis my whole life... I have always been in the "mild" range. I had a check up in 2008.
So in the past 3 years or well since I got sick? The bacteria has caused this? My measurements have not changed in my valve since I was 14 years old. Over 20 years ago...
Lyme/bartonella/rickettsia or coincidence?.....
I started back on oral doxycycline on Friday. I feel icky today. Woke up with a headache and no desire to do anything. My body just aches and hurts.
I do not think my insurance company is going to budge. For a non profit organization they certianly paid their ceo well!
-------------------- Diagnosed 11/29/10 10 bands reactive IGG 3 bands reactive IGM Posts: 46 | From Mass | Registered: Dec 2010
| IP: Logged |
posted
@karenl They did check my levels and I seem to be on the lower side said I'm at an 80. My mother has lupus and RA. No one has mentioned any other posibilities of me having it.
Some conditions may cause a false positive test, including: HIV Lyme disease Certain types of pneumonia Malaria Systemic lupus erythematosus
My doctor did the test 2 times with 2 different labs. Both came back exactly the same. The final confirmation comes back negative.
I can't even imagine that I would have that. Really there is no possible way. Unless he really did cheat on me.. But I'm willing to bet everything that he wouldn't do that to me or our family.
-------------------- Diagnosed 11/29/10 10 bands reactive IGG 3 bands reactive IGM Posts: 46 | From Mass | Registered: Dec 2010
| IP: Logged |
chiquita incognita
Unregistered
posted
Here is some new information I just came across in a book which i just got from the library. TOot toot, hooray for the librarians! They are on our side. Yippee!!
"Coping with Lyme Disease, A Practical Guide to Dealing with Diagnosis and Treatment" by Denise Lang, with Kenneth Liegner, MD An Owl Book, Heny Holt and Company
Bad news first, then good news thereafter.
on page 205: "Depite international and domestic research to the contrary, despite the CDC's emphatic statements that chronic Lyme disease is a serious condition and should be treated appropriately, and that CDC criteria for tracking lyme disease should not be used for any other purpose, most insurance companies have glommed onto CDC restrictive criteria as well asa set of medical practice guidelines concerning Lyme disease issued by the Infectious Diseases Society of America (IDSA).These guidelines assert that there is "no significant evidence that chronic lyme disease exists" and taht there is "no role for treatment with antibiotics beyond one or at most two months for any case of LYme disease".
Do we all fit into their box? Methinks not. Time to sue these unconscienable harm-doers? Methinks yes.
Here is a note of hope: on page 213 of the book above:
"Equitable treatment from insurance companies is also the province of Families USA, located in Washington, DC. Formerly the Villers FOundation, it was founded in 1981 by Philippe Villers and his wife, Kate, to reform the health care system in the United States so that it assures universal access to care. Villers, who fled to escape Nazi persecution, grew up to become the creator of Computervision, a successful computer company. The foundation is his contribution to his adopted country. It provides grants and advocacy to those seeking redress in the health care arena. Under its Health Assistance Partnership, Families USA assistance to consumers ranges from education and mediating solutions to investigating complaints and actually representing consumers in hearings".
Wisely, the book also suggests appealing to the media for help. PUblicity can shame these wrongdoers down, forcing them to pay. If not, other people may step forward to help.
I knew someone who did that when one person needed an organ transplant and couldn't afford it. They had an article written up in the biggest local newspaper about organ transplants, the long waits in line, etc. followed by a one-sentence statement that "as far as the cost, we frankly don't know what we are going to do". They got about $5,000 in donations to help.
More resources listed in the book. MANY of them! HEre are a few:
Medscape AE recent research updated daily, posted on Pubmed, could be helpful as support in writing claims Medscape AE www.medscape.com
NeedyMeds.com has info about how to get coverage in absence of insurance. Don't call with problems, see website www.needymeds.com
The book also mentions appealing to your State for help.
You could contact a case worker in your State Representative or Senator's office and ask them to help you.
YOu can also call the State's Insurance COmmission to get instructions for appealing on the State level.
Lots more resources and info in this book! THanks to my local library, toot toot trumpets blast woo hoo! It's good to know that there are people who care. We are not fighting this alone. Perhaps the libraries have more resources than any mentioned above. And the book has more resources, check it out.
IP: Logged |
You have not been around long enough to know that the aldf is NOT on our side. the other organizations I think are all ok.
Keep smiling,
The last year or two the new buzzword in lyme treatment is biofilms. I would suggest an ACAM doc to maybe do IV chelation. But be sure they are lyme literate as there could be bacteria etc hiding out in the calcium deposits.
Not sure if anyone tests for it anymore or not -- but one other thing to check on is nanobacteria. Treatment for that is also EDTA chelation.
Can search for a doc based on location and treatments offered.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
chiquita incognita
Unregistered
posted
Hi Bea THank you for the headsup and note taken! Really appreciate it. Further, you are always such a resource of information! Are you a health practitioner?
Thank you for stepping forward and please know how much I Have valued your highly informative posts! Best wishes, CI
IP: Logged |
Hubby and I are both accountants. But for the last 10 years I have been his fulltime caregiver so I have done lots of research plus we have spent way too much time in doctors offices.
Steve's mom was a pharmacist but was pretty much antidrug. I grew up on a farm in West Virginia and my brothers used to wildcraft plants and trap for spending money. My parents have always had very large organic gardens and grow many heirloom varieties of fruits and vegetables.
My dream is to sometime return to West Virginia and start some sort of herbal business. My parents farm is about 50% woodland and it has been so long since I have been in the woods I probably could not even identify the plants my brothers used to dig -- mayapple, wild ginger, yellowroot, snakeroot, ginseng, bloodroot and others.
Hopefully sometime this year hubby will be done with IV meds and we can go for a long visit to my parents and he can do his physical therapy walking up and down hills and mountains instead of on a treadmill. Getting out in nature is something I think would be very beneficial to him mentally as well as physically.
Dad bought a bunch of guinea hens after learning hubby had lyme disease. Growing up other than dogticks on our dogs we never had any tick problems. Even with all the deer I had never even seen a deer tick.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
chiquita incognita
Unregistered
posted
Hi Bea What a fascinating background! Thank you for this colorful personal account, and I just love it!!
Let's talk by pm. Your mailbox is full, feel free to contact me and clear your own box and let' s talk. Will love it!
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/
UBBFriend: Email this page to someone!
![[rant]](graemlins/rant.gif)
![[Smile]](smile.gif)
![[Frown]](frown.gif)
Printer-friendly view of this topic