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IV antibiotics and Insurance


mdmom

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My insurance company will not pre-authorize IV antibiotics and placement of a chest port for my DS14. They told us that we need to have the claims submitted before they will decide whether or not to pay. So I'm left playing a game of "Insurance Roulette." My husband and I are not in a position to pay out of pocket for this treatment. The estimated cost of the medicine and home nursing care is $600/week. Plus we would have to pay for placement of the port including hospital, surgical and anesthesia fees. Anyone have any advice? Has anyone else's insurance company played games like this?

 

If any of you have followed my story the last year, our insurance company already refused to pay for IVIG when we thought we were dealing with only PANDAS. We were forced to look for alternative treaments for PANDAS, which is when we uncovered Lyme, Babesia and Bartonella.

 

I am broken-hearted, to say the least. My son is very sick and we cannot even get the treatment he needs.

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Oh I am so sorry too. I am completely upset about insurance companies and the whole dang thing. I hope you can find a way to get this paid for or find another treatment that will help. My expectation next year is that insurance won't be covering anything that is actually useful and key to our healing. That is just wrong.

 

Susan

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This is the pits for you and your son. Precertified or preapproved does not necessarily mean they will pay for the procedure after the fact. Our son had a spect scan that was preapproved by BCBS of KS. We had the scan performed at a major hospital that is affiliated with a large state university. After the procedure, the insurance paid their part, we paid the copay, and later THEY TOOK IT ALL BACK! :o We have hired an advocate to fight this decision but with no success so far. No one can believe this story when I tell it, but it really happened. We are on the hook for over $7,000 beyond what we paid in copays.

 

The take away from this is do everything you can to get documentation, and written preapproval. If the worst happens, know that hospitals will set up payment plans for you and that medical expenses are tax deductible if you file long form. Do what must be done for your son, but don't expect the insurance company to play nice.

 

I hate insurance companies with a passion. Your doctor should be able to help you with this issue.

 

Cobbie

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My insurance company will not pre-authorize IV antibiotics and placement of a chest port for my DS14. They told us that we need to have the claims submitted before they will decide whether or not to pay. So I'm left playing a game of "Insurance Roulette." My husband and I are not in a position to pay out of pocket for this treatment. The estimated cost of the medicine and home nursing care is $600/week. Plus we would have to pay for placement of the port including hospital, surgical and anesthesia fees. Anyone have any advice? Has anyone else's insurance company played games like this?

 

If any of you have followed my story the last year, our insurance company already refused to pay for IVIG when we thought we were dealing with only PANDAS. We were forced to look for alternative treaments for PANDAS, which is when we uncovered Lyme, Babesia and Bartonella.

 

I am broken-hearted, to say the least. My son is very sick and we cannot even get the treatment he needs.

 

 

 

How many weeks would you have to treat this way, instead of using oral abx. Also, keep in mind that although IV abx can be really powerful stuff, we also ended up with very serious reactions to 2 abx we had not had reactions to in the past (flaggyl and azith.) So, now, he can't take either one again, and we had to d/c the IV (we did get good results from the IV cleocin, but I was afraid to try anything else.)

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tpotter--

Do you regret doing IV? Or do you feel it helped in some way?

 

Do you know why your son ended up reacting to the oral meds after the IV meds? What was his reaction?

 

Thanks to everyone for the replies.

 

 

Actually, I don't regret doing them, because it was the IV cleocin that actually confirmed for us that we were dealing with bartonella on top of everything else (the stretch marks faded dramatically, but didn't go away completely...he'd had these stretch marks for several years.) Because of that, we tested him with Igenex for co-infections, and Erlichiosis finally came back positive (and the symptoms were a direct match with many of his more severe physical symptoms.) We are also assuming that there is babesia, because of the spleen, liver and white blood cell symptoms. We wouldn't have known any of this (and I was ready to d/c treatment for lyme, because I wasn't seeing results, and wasn't certain anyway that it was lyme or co-infections...the WB only had 1 positive IgG band.) We did the IV abx, because he was extremely sick at that time (spleen enlarged, wbc low, liver elevated, very high ASO titers.)

 

It was actually the allergic reaction to azith and flaggyl as IV abx that he had. We had started him on the IV cleocin for the strep infection, but when the stretch marks started fading, I called the LLMD, and he said that if we could, see if we could extend the tx (IV abx was approved because of the spleen, strep and liver by a local dr.) and add azith. We tried, and he immediately had difficulty breathing. Had to stop immediately, and give benedryl. We waited a few days, and tried flaggyl (at the suggestion of the LLMD), on the 2nd day, he had a huge red hive on his throat, and then severe difficulty breathing. Went to the ER for that one. Again, had to stop Kept going a few more days with cleocin, then stopped. He did a total of 7 weeks of IV abx, and I do think it made a definite difference. If we could have not had the reactions to azith and flaggyl, we'd probably be home free by now, but we are still fighting the co-infections (at least bartonella, and possibly the other 2 as well.) And, we are stuck using oral abx again, but can't even use azith or flaggyl (which are a big deal in bart treatment.)

 

So, no, I don't regret doing it, and I'm sure I would try again if I didn't know what was going to happen, but I just wanted to warn you that it's pretty heavy duty.

 

I know that it's terribly frustrating, and money is getting horribly tight for most of us, but personally, I would get my son the treatments he needs at this point, and then just fight the daylights out of the insurance company. Also, as someone else mentioned, if you get it done at a large hospital, they will set up a payment plan for you.

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tpotter: I am confused by your statement "We did the IV abx, because he was extremely sick at that time (spleen enlarged, wbc low, liver elevated, very high ASO titers.)"

 

I thought that you were not suppose to do aggressive treatments like IV abx if any of the blood work was out of range?

 

Of course, I have read that some LLMDs favor IV abx for neuro lyme because they need to be more aggressive with that. I just thought you couldn't do IV abx when your body is stressed (ie. out of range markers)?

 

I'd be curious to hear what you were told bc we are considering IV abx. Also, what type of symptoms did you see that are related to spleen and liver? One last question, did your son ever have an allergic reaction to oral Flagyl or Zith before trying IV?

 

Pretty scary stuff. I am happy you resolved everything.

 

Thanks, John L

 

 

 

tpotter--

Do you regret doing IV? Or do you feel it helped in some way?

 

Do you know why your son ended up reacting to the oral meds after the IV meds? What was his reaction?

 

Thanks to everyone for the replies.

 

 

Actually, I don't regret doing them, because it was the IV cleocin that actually confirmed for us that we were dealing with bartonella on top of everything else (the stretch marks faded dramatically, but didn't go away completely...he'd had these stretch marks for several years.) Because of that, we tested him with Igenex for co-infections, and Erlichiosis finally came back positive (and the symptoms were a direct match with many of his more severe physical symptoms.) We are also assuming that there is babesia, because of the spleen, liver and white blood cell symptoms. We wouldn't have known any of this (and I was ready to d/c treatment for lyme, because I wasn't seeing results, and wasn't certain anyway that it was lyme or co-infections...the WB only had 1 positive IgG band.) We did the IV abx, because he was extremely sick at that time (spleen enlarged, wbc low, liver elevated, very high ASO titers.)

 

It was actually the allergic reaction to azith and flaggyl as IV abx that he had. We had started him on the IV cleocin for the strep infection, but when the stretch marks started fading, I called the LLMD, and he said that if we could, see if we could extend the tx (IV abx was approved because of the spleen, strep and liver by a local dr.) and add azith. We tried, and he immediately had difficulty breathing. Had to stop immediately, and give benedryl. We waited a few days, and tried flaggyl (at the suggestion of the LLMD), on the 2nd day, he had a huge red hive on his throat, and then severe difficulty breathing. Went to the ER for that one. Again, had to stop Kept going a few more days with cleocin, then stopped. He did a total of 7 weeks of IV abx, and I do think it made a definite difference. If we could have not had the reactions to azith and flaggyl, we'd probably be home free by now, but we are still fighting the co-infections (at least bartonella, and possibly the other 2 as well.) And, we are stuck using oral abx again, but can't even use azith or flaggyl (which are a big deal in bart treatment.)

 

So, no, I don't regret doing it, and I'm sure I would try again if I didn't know what was going to happen, but I just wanted to warn you that it's pretty heavy duty.

 

I know that it's terribly frustrating, and money is getting horribly tight for most of us, but personally, I would get my son the treatments he needs at this point, and then just fight the daylights out of the insurance company. Also, as someone else mentioned, if you get it done at a large hospital, they will set up a payment plan for you.

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tpotter: I am confused by your statement "We did the IV abx, because he was extremely sick at that time (spleen enlarged, wbc low, liver elevated, very high ASO titers.)"

 

I thought that you were not suppose to do aggressive treatments like IV abx if any of the blood work was out of range?

 

Of course, I have read that some LLMDs favor IV abx for neuro lyme because they need to be more aggressive with that. I just thought you couldn't do IV abx when your body is stressed (ie. out of range markers)?

 

I'd be curious to hear what you were told bc we are considering IV abx. Also, what type of symptoms did you see that are related to spleen and liver? One last question, did your son ever have an allergic reaction to oral Flagyl or Zith before trying IV?

 

Pretty scary stuff. I am happy you resolved everything.

 

Thanks, John L

 

 

 

I never heard about not doing IV abx if the body is stressed. In fact, the first time we did it was when he was hospitalized at CHOP for what they thought originally was Rheum. Fever (they decided it wasn't, but he was already diagnosed with PANDAS, anyway.) Besides, why else would one do IV abx, if not to get rid of persistent infections?

 

His symptoms were that he was in extreme pain, clearly very sick, low grade fever. He had already had pancreatitis the year before, which was triggered by doxycycline, so we knew these pains could be serious. We had already been following his liver enzymes, because they had started going up several months early, and during the last blood test, his ASO titers went up. He had the scarlet fever rash again (although rapid strep was negative...that's not uncommon for him). We couldn't get it under control with oral abx, and during one trip to the ER, I finally got the ER doc to really, really listen to me. He ran a CT scan (or one of the scans), looking to see if it was pancreatitis. He said if it was, he would admit him to a different hospital (not CHOP), and we would see if we could finally get IV abx, and other treatments locally. What he found was that the spleen was enlarged (which probably was causing much of his pain.)

 

I found a local doctor who was willing to order IV abx (my son was horrendously ill at that point.) It was done through homecare, and originally ordered for 1 week. We consulted with Dr. L. (pediatric neuro), who suggested the cleocin. The strep started to clear, and so did the stretch marks, which made us certain we were also dealing with bartonella at that point. LLMD suggested seeing if we could get another week of IV abx, and local doc was more than willing...insurance approved (remember it was for more classic stuff, like resistent strep, elevated liver enzymes (we were pretty certain from all the oral abx), and the spleen being enlarged. That's when we started trying to treat all the co-infections...the line was already in, and insurance was approving it.

 

But, we did have problems with the 2 abx, and no, he did not have allergic reactions previously (now we've been told he can't take them at all.)

 

All that being said, I do not regret trying the IV abx, because it certainly cleared that strep infection, and started working on the bartonella. For the record, his spleen is still enlarged, and LLMD said to see a hematologist. We went to one, who said it appears that the spleen is "just" working overtime on trying to clear infections.

 

He's really struggling again with some major strep infections (I'm also fighting a recurring pneumonia, so I'm not surprised...even the dog was sick, and needed abx.)

 

Yesterday, I started really trying doing detox several times each day, since we're on vacation, and they are home. My fingers are crossed that this works.

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