I have neuro Lyme, with multiple brain lesions, severe headaches, cognitive stuff, abnormal evoked potentials tests, CDC positive Western blot, (all of these produced to Blue Cross at their request along with doctors' reports.)

We even tried orals for a couple months but I needed to get better faster due to a need to work (not to mention to have a BRAIN while working).

My LLMD wants me on the PICC for 90 days minimum.

Blue Cross basically says "We don't care HOW many brain lesions you have or how bad your Lyme disease is. You are only getting 30 days out of us NO MATTER WHAT."

LLMD says no appeal he's aware of has ever succeeded; I make more than the cut off for the Needy Meds program.

HOWEVER, I see you guys' posts all the time where your insurance companies have paid for longer periods -- sometimes MUCH longer periods.

How can this be?

Are insurance companies "back east" just more educated, or are they somehow forced to cover it longer, or what?

WHICH insurance companies are covering it?

I am tempted to write my congressman/senator and complain (not holding breath, just tempted).

Even with Blue Cross coverage (joke that it is), my out-of-pocket for the Rocephin alone is $465 for a month's supply...gotta love that Blue Cross. NOT.

Some examples of insurance companies that WILL cover more than 30 days would be appreciated.

Maybe another route is to have a several month break from IV, then make them put me back on it. Maybe that's how you make them do it. ??

Thanks for any help!!

Michelle

I DO have the Lyme Times Insurance issue.

Sure would be helpful to have the benefit of your insurance IV experiences!

Thanks!

Hi michelle---I am so sorry about this!

I guess we kinda knew this, but were hoping for a change of heart from the heartless ones, eh?

I had 2 months of IV rocephin covered in full by Cigna in 2001. IT was an HMO and it was a glorious thing. I was advised severely NOT to go HMO in CA and that the HMO's here are even worse than the PPO's (hard to imagine huh?)b/c they wont even cover basic oral ABX treatment.

IMO- CA seems to be the worse with the health care coverage. I have lived in many other states and this is the worst ---or is it that the times are just getting worse and worse---the insurance coverage in general is just going down and down and down.

Would it be 445 for the meds out of pocket per MONTH???? That is actually kinda cheap IMO. I was paying that in Co-pays for mepron/zith and diflucan per month. (oral meds) When I had IV it was 500 a DAY. I had to sign something that said if the insurance changed its mind I would be responsible and I will never forget the $500 a day thing.

If it is only about 500 a month, you might be able to take out a loan or something? And this is not say that I agree with them or think that you SHOULD be paying 500 out of pocket after they bleed you dry with their premiums and deductibles.

I did A LOT (as in about 2 weeks of 5 hours a day) of research into this CA insurance matter and found that BCBS of CA PPO is the best I could do. Each person's circumstance is different, but that is what my research found.

I know TIMICA here had to appeal for insurance coverage for IV---is she around? I dont know how it turned out for her though. Keep asking, keep researching. Are you in open enrollment? Can you max out your out of pocket expenses and then not have to pay any more per calendar year?

My suggestion, Michelle, is go to the CDCs website on lyme. Print out the page that says that neurologic lyme has to be treated with IVs for 4 weeks OR LONGER. Underline this and send it to the insurance company. The link is www.cdc.gov/ncidod/dvbid/lyme/qa.htm (Hmmm...I think just brought up the CDC website...so type in lyme...page 2 is what you want)

Then cite Dr. F's latest research study that is soon to be published, stating that long term IVs help chronic lyme patients.

That link can be found at www.lymediseaseassociation.org/Fallon_Study.pdf. If that link doesn't work I think you can find it at the lyme diseases assoc. website somewhere!

You can also cite ILADS Guidelines for Lyme Disease; page S9...bottom left side which states that some patients need prolonged or IV antibiotic treatment.
You can find this at www.guideline.gov...type in "Evidence Based Guidelines for the Management of Lyme Disease.

Send a copy of all these paper, with the information UNDERLINED that you are trying to convey, with a letter to your insurance company. Send it FedEX, two day, and request a reply before the date of your picc line 30 day limit that they have now imposed on you.

If they refuse, then contact your state attorney general's office for help. Also your state insurance commission may be of benefit. Don't give up. That is what your insurance company wants you to do!

I have had to battle my insurance company from the get go on this one....UGH. But, so far they agreed to pay for my first 6 weeks. We'll see what they say about the NEXT 6 weeks!

Tina

I have the same problem. I just got the "Insurance" issue of LymeTimes, it looks very helpful. It is issue #39/40. Go to
lymetimes.org

Unfortunately it took 2 or 3 weeks for it to arrive in the mail.

Not saying you shouldn't try. But there has not been a good precedent set. You might try contacting your legislators. They are becoming more aware of Lyme.

I know in CT and they require insurance companies to cover it for at least 30 days or longer if prescribed by a neurologist, rhuem, or (I think)infectious disease dr.

Although I know this doesnt help YOU much right now It seems CA desperately needs a similar law.

Hubby did 120 grams and spread it out over 3 months instead of 2 months. He noticed almost immediate improvement (maybe symptoms decreased by 50%) while doing the IV's, but within a week of stopping symptoms began gradually returning.

The other thing hubby did which is probably controversial is that every day immediately after the IV Rocephin (we used D5W instead of sterile water so it would penetrate the brain better) I followed up with a 2nd IV of Vitamin C (25 grams) to help with detox.
I also did IV push glutathione at 1000mg daily.

At least 1 or 2 times every day during the IV's I had to stop and give hubby IV Ativan to calm seizure-like activity.

He was not treated for coinfections -- babesia and bartonella -- until several months later which at least in part explains relapse.

Hubby has Anthem Blue Cross Blue Shield of Virginia and they have a $5000 annual prescription maximum. We ended up paying most of the cost of the Rocephin ourselves and I administered the IV's for him at home after the doctor trained me.

His insurance basically said that if we did the meds at home they would pay for whatever the doctor prescribed (oral or IV)up to the annual maximum.

If you are interested in reading what protocol hubby is currently on see my recent post under the Multiple Diseases question at
http://flash.lymenet.org/ubb/Forum1/HTML/036654.html

To read his treatment history for the last 4 1/2 years (very very long) see
http://flash.lymenet.org/ubb/Forum1/HTML/035062.html

Good luck and hope you are improving.

Bea Seibert

Bea, good question, as to "is it helping?.."

Maybe too early to tell; I've just been on it four days now.

I waited with trepidation for the sky to fall, and -- rather anticlimactically, I must say -- it didn't.

My first month was Doxy, which was pretty toxic off and on.

Second month was Amoxicillin, which put me in 17 straight days of shrieking head pain and "early Alzheimer's." :-)

So I was surprised that the 2 grams of Rocephin has not done too much very dramatic yet other than eroding my already precarious finances.

Could it mean I'm cured? In a little over two months?

Could it mean there are no spirochetes left in my brain to kill?

Or did the two months of orals just knock down the load enough that the herx is just really mild? (I do still have mild headaches, a little numbness, memory loss, diarrhea, but all stuff I can handle relative to the shrieking headaches!!!)

Maybe I shouldn't fight for the 90 days the LLMD wants based on the lack of big ugly herx?

Anyone had similar experience?

Thanks..

quote:

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Originally posted by riversinger:
Sorry to say, but I have heard over and over that Blue Cross CA will not pay more than 30 days of IV. Period. I know a number of docs who have tried appealing with no luck.

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Thanks, River. Yup, that's almost word-for-word what my LLMD told me. I know that he knows, too - he has treated a gazillion Blue Cross Lyme patients.

Question is, will Blue Cross cover a relapse? I.E., if you treat with orals but begin slipping, or go off treatment and then relapse, would they re-authorize a treatment of IV if you previously already did IV? Do you know the answer to that?

Thanks for your help!

Michelle

quote:

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Originally posted by trails:
If it is only about 500 a month, you might be able to take out a loan or something?

---

Hi Trails! The $500 per month is out of pocket WITH insurance picking up the $2 grand. If they AREN'T paying anything, the total bill is about 2500.00 a month to stay on it. And they are saying they won't cover a dime of it after 30 days.

So yes, I could afford the co-pay each month of $500, but definitely NOT the whole 2500 each month!

Blue Cross really sucks.

California is about the suckiest state to get Lyme disease in of all of them!

Michelle

PS Thanks, Timaca, for the link...Sure wish they'd get that new study published already! Maybe it would help! That won't stop me from citing it!

I do have to say the plan we had at the time covered everything else great!

Has anything changed for you?

So your Co-pay for IV will be 500 a month?? Sorry---it could be brain fog, and if you are busy sorting all this out-dont worry about my q's---just get what you need and write to me later. Just trying to understand better.

quote:

---

Has anything changed for you?

So your Co-pay for IV will be 500 a month??
Bestest,
Trails [/B]

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Hey Trails... Yup, my out-of-pocket comes to about $460, all told. My insurance is through my employer and we're a small company so maybe the coverage could be a better plan, but I s'pose I'm lucky to have coverage a'tall!

I think the plan is to start fighting with Blue Cross toward the end of the 30 days.

I DID encouragingly hear from one nice lady in Southern California who has Blue Cross insurance who DID get 1 year approval for IV. She followed the protocols/appeals laid out in the Lyme Times insurance issue. So there's hope!

Also, my original forecast of 'nothing's happening after four days on IV Rocephin' was a little premature, perhaps... :-) Now that I've been on it about 15 days, I'm so tired that if I don't wire up with tons of caffeine in the morning followed by pre-emptive tons of Cokes in the afternoon, will fall asleep standing up!!!

I won't go down without a fight.

Thanks for the link, Bea. That's very helpful!

Michelle

Do all the appeals that they require...and keep copies of everything that you FedEx to them.

If they continue to deny you, you might try appealing to the state attorney general's office (at least that is what my insurance agent (car and home agent--but he sells health insurance too) told me to do if I hit a brick wall).