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Advice regarding LLMD's/Spinal Tap

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Posted 8/11/2015 3:45 PM (GMT 0)
Hello,
I recently had a spinal tap done and got my results back. The western blot showed 3 positive bands in the spinal fluid, 1 specific to Lyme (23). My Dr said that the CDC wants to see 4 bands for a ''positive'' spinal tap. I have a CDC positive blood WB.

They would like me to see a LLMD to have IV antibiotic treatment. It appears unlikely that I will find one who accepts my insurance. My question is this - I understand that visits and followups are out of pocket. However, what about the installation of the PICC line and the actual antibiotics? When seeing an LLMD who does not accept insurance, is every single thing out of pocket? I would appreciate any help/advice, as I am feeling a bit lost.
Thank you
Posted 8/11/2015 4:04 PM (GMT 0)
Just because you aren't CDC positive, surely doesn't mean that you don't have Lyme disease. If you showed positive or IND on any one of these Lyme specific bands (25, 28, 31, 34, 37, 39, 83, & 93), then you have Lyme, as there is no other way to get that Lyme bacteria inside of you.

As for the IV treatments, it's up to you if you get them or not. There is very little evidence that they are any better for treating these infections than oral meds, unless you have severe GI symptoms where you can't keep them down or can't absorb them.

If you choose to do IV meds, then you can submit them to your insurance, but it's up to them if they are going to cover the cost or not. If the doctor can write it up so that it's something that is actually covered under your insurance, then it may be covered. Remember, you can always appeal any insurance denial.
Posted 8/11/2015 5:44 PM (GMT 0)
"The western blot showed 3 positive bands in the spinal fluid, 1 specific to Lyme (23). My Dr said that the CDC wants to see 4 bands for a ''positive'' spinal tap. I have a CDC positive blood WB. "

That is a clear-cut case of Lyme Disease...my goodness...

I'm sorry you felt you had to do the spinal tap when you had a CDC positive WB. That's just not right.
Posted 8/11/2015 11:00 PM (GMT 0)
Thank you for your replies. I was under the impression that a positive spinal tap would help in term of insurance payments for getting IV treat...I guess that only applies to 'CDC positive' though?
I called a few LLMD's today for pricing and I really don't see how I could afford it. I could afford the initial visit and a few follow ups, but I am so worried about extra costs along the way that could really sap me financially. I have read some posts where people say they have spent thousands, even tens of thousands or more on treatment....it is frightening to me that I may not be able to afford the treatment they say I need.

I have been reading about oral abx efficacy vs IV, and found a study claiming that Cefixime and Probenecid (to keep plasma levels high) showed essentially the same results as IV. Does anyone have experience with this?
Posted 8/11/2015 11:36 PM (GMT 0)
Take the time to go through these links, Amiranda. There will be some duplicate posts in them, but each of them have something valuable:

Care Credit
www.carecredit.com/

www.carecredit.com/howcarecreditworks/


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www.goodrx.com/

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www.lduc.org/lyme-disease-resources

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/prescriptionhope.com/

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/www.rxhope.com/about.aspx

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www.pparx.org

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www.needymeds.org

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www.healingwell.com/community/default.aspx?f=30&m=2958427&p=1

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www.gooddaysfromcdf.org/for-patients/patient-assistance/

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lymedisease.org/news/touchedbylyme/lyme-financial-destruction.html

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lymeunderground.com/survival-tactics-getting-by-on-a-limited-budget/

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lyme.kaiserpapers.org/financial-assistance.html

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lymedisease.org/news/touchedbylyme/needy-meds.html

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www.lduc.org/lyme-disease-resources
Posted 8/12/2015 12:16 AM (GMT 0)
I think it will depend on your insurance. My original doctor was not in network, however the placement of the pic and many of the tests were covered. The pic care and rocephin was covered. There was a co pay.

I was a wreck worrying about the money. My husband pointed out "we buy cars for thousands of dollars. Isn't your health worth it"??
Posted 8/12/2015 12:34 AM (GMT 0)
Traveler,
Thank you very much for those links....they are very helpful. I never knew such programs even existed.

Tulip,
That is good to know - a big concern of mine is that the abx/picc placement wouldn't be covered

I just received a message from my doctor suggesting that I have a PICC installed and be hospitalized in case I have a strong Herxheimer reaction. Is it common to be hospitalized at the first infusion??
Posted 8/12/2015 2:55 AM (GMT 0)
My first infusion was at the hospital after I finished up in the cath lab. They did it as an outpatient and monitored me. I went home a few hours later.
Posted 8/12/2015 3:16 AM (GMT 0)
They always want you to do your first infusions at the doctors office or a hospital. If you do end up having a bad reaction they can take care of it.

I just had to try a new medication today. Good thing I was in there because I did have a bad reaction and needed some benadryl through my iv. No fun.

If you don't want a picc you don't have to get one. My advice would ALWAYS be to try oral first. But it really depends on your situation, we are all so different. A picc line is a huge responsibility. I hate mine. It's just another thing to worry about it. Although I can appreciate the benefits since I have such bad gastrointestinal issues.

Do a lot of research. See if you can talk to someone from your doctor's office that has one. I hear it's usually not covered for Lyme. But since you are cdc positive you might get lucky. Check your policy and see if they will cover longer than 30 days. Lord knows unless you just got bit 30 days isn't long enough to heal! If they won't cover the picc, it's highly unlikely they will cover your meds.

I hate insurance. Almost as much as I hate Lyme lol.
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