Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
I have my first appointment with a LLMD soon, and I am wondering about the oral medications.
I have prescription insurance, but am wondering if insurance companies put limits on how long they will pay for say Doxy or Mepron, for example. Do they have a time limit and after that you have to pay out of pocket?
Do they need a diagnosis backed up with a lab test before they will cover a medication?
Just wondering because I just got out of debt, and I don't have the money to pay for much.
I believe my doc also uses alternative approaches, but not even sure I could afford these things either.
I guess I'm getting cold feet and wondering if I am making a mistake by going. The fees are so high, also.
I am currently using herbs. But wanted to try this along with the herbs.
Thanks all.
Posts: 1358 | From Midwest | Registered: Apr 2009
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
It depends on who your insurance is with, in my opinion / experience.
My insurance (thankfully) doesn't have a limit as to how long. But I hear some do. Only way to know is to try.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Thanks. I hear so much about people going into debt by tens to hundreds of thousands of dollars, and that really scares me.
But if the meds will mostly be covered, then I feel a little better. Not sure I can afford to pay for all of those tests, though.
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
In my experience, usually the insurance companies pay for the medications with no problem. The only problem will be if it is IV medication. The other possible problem is Mepron.
Mepron is extremely expensive. If the insurance company gives you a hard time about that one, usually the lyme doctor can take care of the problem. They give a justification, etc.
The cheapest way to get these expensive meds is to go through your mail order pharmacy if you have such an option in your plan. You won't believe the thousands of dollars you can save that way, especially in the case of Mepron.
With mail order, you send them a prescription for a 3 months supply of meds and only have to pay one fairly low copay for the med. If you get a one month prescription, it is still the same cost to you, so be sure all prescriptions that go through mail order are always 3 months worth.
Hopefully you won't need IV. The fight to get more than 4 weeks of IV meds usually goes against the patient. Only the sickest need IV, so as long as you are not bedbound, in a wheel chair, having seizures, or a complete zombie, you likely won't need IV.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You may be safer with the other tick-borne infections such as babesia or bartonella but, still, most insurance companies and pharmacists are used to short term treatment and, with those, raises the alert system for lyme treatment.
I advise NOT to tell your pharmacist your diagnosis of lyme. Do not even whisper the word "lyme" to someone with you while in the drug store.
I would not discuss it with friends or family when out in public - at all, anywhere there are ears on a human. You just never know who might overhear.
I know that sounds paranoid. It is not. It's realistic. (If you've not yet seen the film "Under Our Skin" it helps explain why.)
Practice your response if the pharmacist (or anyone else) asks. You may be caught off guard so it really helps to practice a simple reply.
Get a bit bewildered and just say something like, "uh, well, whatever this is supposed to help" or "can't quite remember, but this should help" etc.
Act like it's no big deal.
If you MUST, for some reason explain, you might say something like: some unusual strain of something like "I think is called, uh, borreliosis." Still, this is between you and your doctor.
Some pharmacists have flagged clients to insurance carriers. You just don't want that to happen as some insurance companies want to cover just 30 days (or less) and then stop.
As long as you don't get red-flagged, the Rx that are covered under your prescription formulary may go through just fine.
It's difficult though, never really knowing for sure in advance.
Across the country, Kaiser is one of the worst regarding lyme diagnosis and treatment. For more details, this is not from Kaiser but ABOUT them:
Kaiser Papers -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If you have a Costco near you, Rx costs there are much less expensive than most places. You do not need to be a member to buy Rx at Costco. Not sure of the similar stores such as Sam's Club, etc.
Walmart, too.
Talk to those in your area lyme support groups to see if anyone else has the same insurance as you do. Such conversations might offer some techniques and assurances. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
The Kroger in my town will price match the Sams club prices on prescriptions. Just call around and check prices.
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Thanks everyone. I just found out this doctor is also raising the rates next year. Boy, I just don't know. I am considering cancelling the appointment. I don't have hundreds of dollars to spent every three months, plus prescriptions, plus herbs, tests, etc.
I understand that they have to protect themselves from lawsuits. But many of us are broke from being sick for years.
posted
The out of pocket costs are VERY overwhelming,
especially when Lyme has taken away my ability
to work. I just take it one appointment and one
prescription at a time. If you look too far
ahead, it's very easy to get overwhelmed with
the costs and want to just give up on
treatment.
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You can tell the doctor you can't afford the tests right now and ask to be treated based on symptoms.
That can save you many hundreds of dollars alone.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Yes, for most LLMDs, their years of experience - together with their finely sharpened senses and keen ability for inquiry and observation - provide far better assessment than most lab tests. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Thanks all. I guess I shouldn't give up so quickly. I'm glad to know that they don't absolutely need tests.
Thanks for your suggestions and support.
Posts: 1358 | From Midwest | Registered: Apr 2009
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posted
I'm in the same boat! I have my first appt with an LLMD in Chicago at the end of this month (2 day trip). I am just graduating this week and have no money coming in and have racked up over 10k of medical debt in the last 4 months with ER visits, MRI, CT scan, etc etc... America's medical system needs a complete overhaul in my opinion.
I am very scared for how expensive the LLMD visit is going to be. When I max out my credit cards, I will have no other options until I start making money in March and then, I will have to start paying back all the medical and massive school debt.
I have trying to remain positive, but it is difficult. I would advise to do whatever you can to take care of yourself and heal, even though it may mean you have to make payments for a long time. There is no reason you should not receive proper medical care.
It is very frustrating for sure.
-------------------- Treating lyme, bart and babs Posts: 506 | From NE | Registered: Dec 2011
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posted
p.s. I tested positive on the ELISA and Western Blot, will those tests be any help to the LLMD or will they want to do brand new ones?? I know that I want to get tested for coinfections because I don't want to get worse and worse and want to get it taken care of asap.
-------------------- Treating lyme, bart and babs Posts: 506 | From NE | Registered: Dec 2011
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
This is my first time visiting the LLMD, but I would think with two positives that should be enough to prove Lyme.
Posts: 1358 | From Midwest | Registered: Apr 2009
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
apeture,
I have lost my ability to work, also. That is why I am so concernced. I spent gobs of money trying to well from what I though was CFS. Just got out of all of that debt, and sure can't do the debt thing again.
I hope that you doctor is helping you.
Yes one day at a time.
Posts: 1358 | From Midwest | Registered: Apr 2009
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posted
My insurance costs me $2600 a year and I'm thinking about dropping it. They do not pay for my phone appointments for my out-of-state LLMD, they don't pay for a naturopath and I prefer alternative care aside from my LLMD and most of the drugs I use are not expensive. I've just got my second round of mepron filled and if it does not work this time around, I will not take it again and will go with the naturopath.
With the exception of mepron, I do not believe that I spend $2600 on drugs. They of course do not pay for supplements, drops and herbs. Tired of being coerced into believing that I will lose my house if I do not have insurance.
Posts: 705 | From WA state | Registered: Jul 2011
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Yes, our medical care (insurance), etc. needs to change. Hopefully it will change for the better.
Medical care is a business (insurance). Profit is what is most important. That is immoral to me. If you co8ld just get catasatrophic coverage, that be best for you financially.
Best wishes. Thanks
Posts: 1358 | From Midwest | Registered: Apr 2009
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