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How do I get Medicaid to cover IV Roceph???

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Posted 2/15/2015 6:19 PM (GMT 0)
Hello everyone, I live in MI and I was just diagnosed with late stage lyme disease.I was diagnosed by a LLMD who is outside of my insurance network. He wants me to be on IV Roceph for a month.Out of pocket treatment will cost me $8000.I don't have that kind of money and I am trying to figure out how to get Medicaid to cover the cost for me.My primary care doctor is through Medicaid .She is clueless about lyme and told me she couldn't give me iv antibiotics and that they don't do that there.So I am at a loss and I don't know where to go or what to do. . sad
Posted 2/15/2015 8:24 PM (GMT 0)
Bump
Posted 2/15/2015 11:07 PM (GMT 0)
Hi LayTee!
Welcome to our community! I just answered in another thread that you posted in, but here is a link that might prove to be helpful: infusingforlymies.com/

If you haven't yet, please do read through our "New to Lyme? Start here!" thread as it has a lot of good information and advice in it, such as symptom lists, detoxing suggestions, and even information on probiotics!

While some do say that IV abx are the only way to go to heal a long standing Lyme infection, it's definitely not the only way to heal one! Many here have healed a chronic Lyme infection with oral abx and I and many others have healed chronic Lyme infections using herbs only. So you have some choices.

Keep on reading and asking questions - knowledge is power with these infections!!
Posted 2/16/2015 12:28 AM (GMT 0)
Thanks for your suggestion Traveler, maybe I will try some of those herbs.
Posted 2/16/2015 8:54 PM (GMT 0)
Let us know what kind of information you need!! We're here to help!
Posted 2/17/2015 1:56 AM (GMT 0)
LayTee123 I tried to send you an email but your email isn't listed. I live in Mi And medicaid covered my IV meds for 4 months. Message me
Posted 2/17/2015 2:15 AM (GMT 0)
jessi - it appears your email isn't enabled, either.
Posted 2/17/2015 2:34 AM (GMT 0)
You can email me at (moderator deleted email address)

Post Edited By Moderator (achievinggrace) : 2/23/2015 5:23:09 AM (GMT-7)

Posted 2/17/2015 2:37 AM (GMT 0)

jessMi said...
LayTee123 I tried to send you an email but your email isn't listed. I live in Mi And medicaid covered my IV meds for 4 months. Message me

Hey jessMi, your email isn't enabled. I just enabled mine..message me please, because I need to start some kind of treatment soon .
Posted 2/17/2015 4:16 AM (GMT 0)
How exactly did you convince your doctor to give you IV antibiotics? Was his reason for administering them your infection with Lyme? If I requested IV antibiotics for Lyme, my doctor would instantly refuse. Very strange. I was told that would be medical malpractice, and that he would lose his license.

My other doctor wanted to put me on Levaquin and Plaquenil. I told him hell no. Lyme disease is reversible in my eyes, but the damage from fluoroquinolones are very likely to be permanent. No thank you. He didn't like that and refused to treat me afterwards. I haven't seen him since.
Posted 2/17/2015 1:45 PM (GMT 0)

firebluefreak said...
How exactly did you convince your doctor to give you IV antibiotics? Was his reason for administering them your infection with Lyme? If I requested IV antibiotics for Lyme, my doctor would instantly refuse. Very strange. I was told that would be medical malpractice, and that he would lose his license.

My other doctor wanted to put me on Levaquin and Plaquenil. I told him hell no. Lyme disease is reversible in my eyes, but the damage from Ifluoroquinolones are very likely to be permanent. No thank you. He didn't like that and refused to treat me afterwards. I haven't seen him since.

I went to a LLMD, not all doctors understand how serious lyme disease is.My Lyme Literate Doctor thought I should be on IV Rocephin immediately.With all of my crazy neuro symptoms, he knows that I need something that can cross the blood brain barrier.
Posted 2/17/2015 4:51 PM (GMT 0)
LayTee,
What kind of a protocol are you wanting to start? I may be able to help point you in the right direction.
Posted 2/17/2015 4:53 PM (GMT 0)
Have you talked to your LLMD about other options? There are other options besides IV treatment if your insurance won't cover it.
Posted 2/17/2015 5:16 PM (GMT 0)

sarahm620 said...
Have you talked to your LLMD about other options? There are other options besides IV treatment if your insurance won't cover it.

That was the only treatment that he suggested. I been on oral antibiotics before and they didn't help one bit.I also bought a Hula Clark Zapper and that made my symptoms 10 times worse.I'm scared to use it again.
Posted 2/22/2015 4:13 PM (GMT 0)
What kind if doctor are you going to? I don't think any pcp would prescribe this. I would go to an infectious disease specialist if you are trying to get medicaid to cover it. This will probably only give you one month of it because that is what their guidelines say but maybe if it goes well you can convince them to continue it or some will pay for the antibiotic themselves since they have the picc line already and apparently you can find this antibiotic online at a decent price and they don't get the home health nurse but just do it all themselves and go to a nurse for the dressing change. Maybe that could be an option. I had an infectious disease specialist prescribe one month of it but I got an allergic reaction 10 days in and had to start. Medicaid covered the whole thing. A infectious disease specialist usually won't treat you without a positive igg lyme test though so I don't know what you situation is.
Posted 2/22/2015 4:55 PM (GMT 0)

Green33 said...
What kind if doctor are you going to? I don't think any pcp would prescribe this. I would go to an infectious disease specialist if you are trying to get medicaid to cover it. This will probably only give you one month of it because that is what their guidelines say but maybe if it goes well you can convince them to continue it or some will pay for the antibiotic themselves since they have the picc line already and apparently you can find this antibiotic online at a decent price and they don't get the home health nurse but just do it all themselves and go to a nurse for the dressing change. Maybe that could be an option. I had an infectious disease specialist prescribe one month of it but I got an allergic reaction 10 days in and had to start. Medicaid covered the whole thing. A infectious disease specialist usually won't treat you without a positive igg lyme test though so I don't know what you situation is.

I have a positive ELISA. .and my western blot IGM showed 18++, 23-25 IND,39IND,41+,83-89+ I have been paying out of pocket to see a LLMD and he clinically diagnosed me based off of my test results and my neuro symptoms. I made an appointment with an infectious diseases doctor through Medicaid. I'm going to show her my test results and see if she will allow me to have the IV Rocephin.
Posted 2/22/2015 6:07 PM (GMT 0)
I hope you find a compassionate ID doc that is willing to work with you on this!! Just don't be surprised if you don't.

Best of luck, LayTee!
Posted 2/22/2015 6:57 PM (GMT 0)

Traveler said...
I hope you find a compassionate ID doc that is willing to work with you on this!! Just don't be surprised if you don't.

Best of luck, LayTee!

Yeah, tell me about it smh..I went to two ID doctors already,and they basically said..if I haven't been around deers or to conneticut..then I don't have it and it's all in my head.And my test result was most likely a false positive.I'll probably end up treating with herbs.
Posted 2/22/2015 7:07 PM (GMT 0)
Yep, that's the usual response!! Down here in Arkansas they just believe that the ticks that are infected with Lyme don't cross state borders. shakehead

Know that we are here to help you find information on the different herbal protocols and you can find a ton of personal experiences from those that have used them by using our search function. Just remember to put the word Lyme at the front of each search to keep the results coming from mainly the Lyme forum.
Posted 2/22/2015 11:41 PM (GMT 0)
Then make a story about going to Connecticut camping or something... Just a thought.
Posted 2/23/2015 1:35 AM (GMT 0)
Yes, I think that's what imma have to do..get creative with my story ...so I can get treatment.

Green33 said...
Then make a story about going to Connecticut camping or something... Just a thought.

Posted 2/23/2015 3:46 AM (GMT 0)
First advice, don't tell them you are going to a llmd or that you want rocephin. Docs don't usually like when you come in demanding a certain treatment. my llmd said not to tell them I am going to her. I'd go in and focus on your symptoms and say your pcp ordered the lyme test. Say something like you sometimes visited a friend in New York or Connecticut and would go camping. Some of the people you had camped with had gotten bitten by ticks, you don't know if you have gotten bitten but certainly could have. Focus on your neuro symptoms. Just say you've looked some info up online and think you may have neuro lyme. Hear them out and see if they think you might. They will probably want to blood test you for a bunch of other viruses and may want to go with the standard doxy 100mg 2x a day if they think you have never had antibiotics for lyme. If they want to treat with oral first you can always ask if there is something stronger but don't be surprised if they want to do a month of doxy first and just go with it. It's better than nothing and if it doesn't make a big difference then there is a much better chance of them doing rocephin for a month.
Posted 2/23/2015 5:09 AM (GMT 0)
Ok, I'll tell her that story and see if she'll treat me.I been to a couple of ID doctors b4, and they sent me away ...told me I just had anxiety and I need to see a shrink. I also went to a neurologist to try to get help.I recorded my muscle twitching in my leg and showed it to her.And all she said was"wow, how long has that been going on? " She ended sending me away to ..and was no help at all. It's getting to the point to where I don't even want to be bothered with going to the doctor.The only one who has been sympathetic is my LLMD.

Green33 said...
First advice, don't tell them you are going to a llmd or that you want rocephin. Docs don't usually like when you come in demanding a certain treatment. my llmd said not to tell them I am going to her. I'd go in and focus on your symptoms and say your pcp ordered the lyme test. Say something like you sometimes visited a friend in New York or Connecticut and would go camping. Some of the people you had camped with had gotten bitten by ticks, you don't know if you have gotten bitten but certainly could have. Focus on your neuro symptoms. Just say you've looked some info up online and think you may have neuro lyme. Hear them out and see if they think you might. They will probably want to blood test you for a bunch of other viruses and may want to go with the standard doxy 100mg 2x a day if they think you have never had antibiotics for lyme. If they want to treat with oral first you can always ask if there is something stronger but don't be surprised if they want to do a month of doxy first and just go with it. It's better than nothing and if it doesn't make a big difference then there is a much better chance of them doing rocephin for a month.

Posted 2/23/2015 8:56 PM (GMT 0)
It is unfortunate that lyme has vague symptoms that mimic or match other illnesses. It's so hard to diagnose. Keep trying docs and I'd definitely advise against insisting that you have lyme and insisting on certain treatment, kinda play dumb when you met them. They will probably be less likely to think you are paranoid right off the bat. You have to understand that from there perspective as a doctor they've gotta diagnose something before treating it and usually don't like when the patient tries to do all the diagnosing and treatment plan for them. Right off the bat that can annoy a doc enough to not want to listen to you even if you are right. You may get lucky, third time is a charm right? So in my experience, presenting the facts, possibility of being bitten by a tick, blood tests, symptoms etc. goes over well. Seem like you just want to know if they think you have lyme and what they think you should do to treat the symptoms. But focus on the symptoms and know they will probably suggest a bunch of other possibilities. At least seem open to whatever they suggest and allow them to test you for anything else. Who knows, you could find out it is something else entirely or there is something else besides lyme to treat. Or it will all come back normal and prove that there isn't much else to explain your symptoms. Are you open to treating lyme naturally? My llmd said she has never needed to give anyone an iv. She uses either oral or natural products. She sees the same results from the natural products as oral meds. That would be a much more cost effective approach. Also because I have neuro symptoms and was allergic to the rocephin I have been looking into other options. My id doc prescribed doxy but some guidelines say that higher doses of doxy (200mg 2x) can be used in patients with neuro symptoms with the same effect. Maybe you could consider oral meds out of pocket if you could afford it. It would certainly be cheaper than 8000. Many have healed lyme completely naturally. I've heard that many people now have resistance to antibiotics from all the antibiotics in meat and food we consume and overuse of them. It is hard on the body and iv antibiotic do have some risks. There are many natural antibiotic options. I hope you have a good appointment and can get rocephin but I don't think it would be the only option you have in healing. Are you treating the lyme in the meantime with anything?
Posted 2/23/2015 11:13 PM (GMT 0)
When I was 16, I had these same symptoms that I am having now.And chinese herbs helped me before.But for the life of me,I can't remember what kind of herbs it was that I took.. because it was so long ago. I think I probably have chronic lyme.I currently take red clover, and echinacea, vitamin C, DHA Neuromins and I'm looking to try chinese knot weed.My primary care doctor prescribed me Doxycycline about 2 months ago for an unrelated lyme illness. I reacted bad to it,It gave me vision issues and also while taking it i suddenly started acting like I had OCD.My LLMD said it probably was from the medication killing the lyme. I know when I go to this new doctor, she'll probably act all arrogant and will give me a hard time, its expected ): I been tested for everything under the sun and the only thing that came back positive was lyme.I had a MRI, CAT scan EEG and none of them showed anything. My LLMD suggest that I should have a SPECT scan, but that probably won't show anything either. I also have been wondering,can people get lyme from there dogs?I grew up around dogs and own some now.I wonder do fleas carry lyme too?

Green33 said...
It is unfortunate that lyme has vague symptoms that mimic or match other illnesses. It's so hard to diagnose. Keep trying docs and I'd definitely advise against insisting that you have lyme and insisting on certain treatment, kinda play dumb when you met them. They will probably be less likely to think you are paranoid right off the bat. You have to understand that from there perspective as a doctor they've gotta diagnose something before treating it and usually don't like when the patient tries to do all the diagnosing and treatment plan for them. Right off the bat that can annoy a doc enough to not want to listen to you even if you are right. You may get lucky, third time is a charm right? So in my experience, presenting the facts, possibility of being bitten by a tick, blood tests, symptoms etc. goes over well. Seem like you just want to know if they think you have lyme and what they think you should do to treat the symptoms. But focus on the symptoms and know they will probably suggest a bunch of other possibilities. At least seem open to whatever they suggest and allow them to test you for anything else. Who knows, you could find out it is something else entirely or there is something else besides lyme to treat. Or it will all come back normal and prove that there isn't much else to explain your symptoms. Are you open to treating lyme naturally? My llmd said she has never needed to give anyone an iv. She uses either oral or natural products. She sees the same results from the natural products as oral meds. That would be a much more cost effective approach. Also because I have neuro symptoms and was allergic to the rocephin I have been looking into other options. My id doc prescribed doxy but some guidelines say that higher doses of doxy (200mg 2x) can be used in patients with neuro symptoms with the same effect. Maybe you could consider oral meds out of pocket if you could afford it. It would certainly be cheaper than 8000. Many have healed lyme completely naturally. I've heard that many people now have resistance to antibiotics from all the antibiotics in meat and food we consume and overuse of them. It is hard on the body and iv antibiotic do have some risks. There are many natural antibiotic options. I hope you have a good appointment and can get rocephin but I don't think it would be the only option you have in healing. Are you treating the lyme in the meantime with anything?

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