I have been seeing a LLMD for the past four years for Chronic Lyme.
The doctor that I am seeing was recommended on this site and has a good reputation.
I am currently taking Plaquenil, Biaxin, Ambien,nucyntra , ritalin, zofran,vicodin
I suffer from fevers, migraine headaches, joint pain, dizziness,night sweats, insomina, brain fog, tremors and the list continues to grow.
I was just switched to biaxin because of the fevers.
I cannot tolerate the biaxin without being extremely nauseous but my doctor refuses to give me antibiotics through an IV??
He said that my insurance denied the IV without even contacting them.
My insurance said they would cover the IV as long as it was medically necessary and I had chronic lyme.
My doctor says the insurance will not pay because my labs do not show that I have lyme.
I am currently a full time student but very close to being completely disabled.
I am willing to pay out of pocket for the IV but this doctor is unwilling to offer this to me.
Any suggestions would be greatly appreciated.
Many Thanks!!
Posted by Lymetoo (Member # 743) on :
Most insurance will only pay for one month of IV. So you would still have to pay out of pocket.
have you been treated for BABESIA??
Your symptoms scream it out.
Posted by poppy (Member # 5355) on :
And some insurance companies do require a CDC positive test in order to get that one month of IV.
You may have to switch doctors if this one is not willing to Rx the IV.
In states without any doctor protection (most of them) insurance companies help the medical board take out doctors who prescribe IV because really, they don't even want to pay for a month. This might be part of the reluctance of the doc.
Lymetoo is right that you may have babesia also. Before you go with IV for Lyme, it would be good to treat babesia. Have you been tested for this? Not all cases will get positive tests, but some do.
Posted by bcerq (Member # 24043) on :
You are both right. Based on my symptoms, The
doctor thought I had babesia but the blood
work came back negative. I didn't realize that
not all cases will get positive test results.
Posted by sixgoofykids (Member # 11141) on :
You're not taking much to go after the Lyme. Just Biaxin and Plaquenil. I personally would be looking for a stronger combination including drugs to go after babesia before I looked for IV.
Maybe it's time to see a more aggressive doctor?
Posted by poppy (Member # 5355) on :
There are tests for only two types of babesia in humans, but more types than tests.
Do you know what you were tested for? Both? Or only one? It used to be said that Babesia microti was in the east, Babesia duncani in the west. But testing is turning up duncani in the east too now. So, if you were not tested for both, you should be.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by bcerq: I didn't realize that not all cases will get positive test results.
MOST cases of babs do NOT get positive test results!!
Which lab was used?
Posted by bcerq (Member # 24043) on :
I had no idea that could happen.
It was LabCorp that did the blood work.
Is anyone aware of dr who will treat babesia without a positive test?
(I live in Northern NJ (Morris County).
If yes, Can you please PM me the info?
Many thanks!!
Posted by Lymetoo (Member # 743) on :
also contact these folks... wrong state but they likely know about LLMDs in NJ
Thanks to each of you for taking the time to help me!!!
I appreciate all of the information that you provided...
It's been such a long battle for me.
Many thanks!!
Posted by Sammi (Member # 110) on :
I agree that it sounds like you have Babs. You need to add an anti-malarial such as Mepron to the Biaxin you are taking.
You should definitely speak with your doctor about this. If you don't get anywhere, you may want to get another opinion.
Posted by SouthPaw (Member # 35229) on :
I've been treated by LLMD about 8 months. Been sick 10 years but didn't know I had Lyme till in the hospital last year. Mostly neurological until last year. I got bit again last summer with bullseye. My doctor says I already had it.
LLMD was just treating Lyme. Lyme positive but Bart/Babs negative. She finally started treating Bart because burning feet. It helped.
LLMD added Babs treatment because constant air hunger. Not only can I now speak more than one sentence without gasping but just finished reading my first book since 2002. I had no reading comprehension. My head is a tiny...tiny bit clearer. I can't remember details of the book, the important thing is I finished reading it.
Negative tests aren't always accurate.
Posted by joanthebone (Member # 38407) on :
Sammi~ But Placquenil is an anti-malaria drug. Do you mean that Plaquenil does not treat Babs, very curious about this. THanks.
Posted by Sammi (Member # 110) on :
I am not a medical professional, but in my opinion Plaquenil alone is not effective enough to treat Babs. Most doctors prescribe Mepron or Malarone witn Biaxin, Zitrhomax or Ketek.
When I took Plaquenil, it had no effect on Babs.
Posted by Rumigirl (Member # 15091) on :
Holy cow, IMO you need a new doctor. Do contact and go to both the NY & NJ support groups, so you can make an informed decision about who to see.
Posted by poppy (Member # 5355) on :
I don't think NY is going to be a place where anyone will be able to get lyme treatment now or in the future, if current events are any indication.
Posted by AuntyLynn (Member # 35938) on :
I will send you the NJ list. There is an excellent doc not far from you!
Posted by Keith2612 (Member # 33790) on :
I agree with the others, your symptoms are the same as mine, and I'm finally seeing improvement after getting a new LLMD, and getting treatment for Babesia.
My last doc wouldn't treat for babs either. I can tell you this....you only think you are sick now!!
When you start hitting the babesia...the herxes are like nothing you have ever experienced! You will absolutely feel like you are dying!
I am pulsing Arteminisin in high doses for 3 days....every 10 days, and it absolutely makes me feel worse than I've EVER felt.
You just have to try and remember that it's a good thing! Good luck!
Posted by TF (Member # 14183) on :
I suggest you read and STUDY the Burrascano Guidelines to see what good lyme treatment looks like. You are not being treated properly at all.
If you get to a doc who follows Burrascano, you will likely never, never need IV and the thousands of dollars it would cost you.
The top lyme docs automatically treat all lyme patients for lyme, babesiosis, and bartonella. So, that is what should be done in your case.
Most likely your doctor is afraid to treat with high dose combinations of antibiotics. So, that is why you have not yet gotten well.
I wasted 2 years with such a doctor. So, this is quite common.
If you want a doc who will be aggressive and treat you for all 3 illnesses the Burrascano way, send me a private message.
Under her care, you will likely feel better in 4 months and can forget becoming disabled. I have at least 10 very happy patient reports about her.
Sorry to say, but many in NJ have told me that they don't have any good lyme doctors there.
Write to me if you want more info. Don't stick with this doctor. 4 years is more than enough of this playing around.
Posted by TF (Member # 14183) on :
quote:Originally posted by poppy: I don't think NY is going to be a place where anyone will be able to get lyme treatment now or in the future, if current events are any indication.
poppy, why do you say this?
Posted by poppy (Member # 5355) on :
Sammi, did you not read the articles in the Poughkeepsie newspaper? They have been posted on lymenet.
Posted by Sammi (Member # 110) on :
I did a quick search, but I did not see any recent articles form the Poughkeepsie Journal. Do you have the links?
Posted by AuntyLynn (Member # 35938) on :
Here's one thread with links to a Facebook discussion:
![[Smile]](smile.gif)
Good luck!