I am re-posting this here from support to get more feedback. I have been taking doxy 200mg. for 2 months now from a Dr, R. who said I might have chronic lyme do to my test results. Igenex-IGM 39 IND., 41 ++ and IGG 23-25 IND., 31 IND., 39 IND, 30 ++, 41 ++. Everyone I speak to who has lyme told me I was not being treated appropriately so yesterday I went to see Dr. C in Mt. Kisco N.Y. who is a reccomended llmd on the site list. He said he does not recognize Igenex labs or CD-57 levels which mine were 50( CD-57) hE told me my Igenex bands were not relevent and he would treat me 1 more month with 1000 mg. amox. 2 x daily and if I am not significantly better he will move on from lyme to something else. He said 2 months of doxy. 100 mg. 2x daily should of made me significantly better.( Yes, some things are a little better but some nero. things like twitching is back since abx.)OMG I am so confused . Just looking for some wise advice. Thanks Teresa
Posted by Geneal (Member # 10375) on :
Hmmmm. I am going on my 19th month of treatment for Lyme and/or co-infections.
My LLMD is going to treat me until I am officially in remission.
No symptoms.
I am not understanding the message these LLMD's are giving you,
Unless it is to shift treatment for co-infections.
I started on doxy for about 3 months just to get my bacterial limit down.
Then went onto babesia treatment, bartonella treatment, Lyme treatment,
Babesia again, Lyme again, and here I am...treating babesia again.
I still have Lyme symptoms.
Hugs,
Geneal
Posted by teresambear (Member # 15061) on :
Well I was tested by lab corp. co- infections negative.
Posted by sixgoofykids (Member # 11141) on :
Wow, your post floors me! Isn't this the president of ILADS that you are talking about? My LLMD doesn't use CD57, so that part is okay, some like it others don't. But it confuses me that he doesn't like IGeneX.
I felt somewhat better after two months of treatment, but I was on Doxy (400 mg. per day), Mepron, Biaxin, Artemisia and added in Plaquenil at one month, but I certainly wasn't well.
Could he have meant he was moving on to look at coinfections?
You have IND on several Lyme specific bands. My LLMD treated my daughter based on clinical symptoms and the IND's, though it was not a clear test. However, I must say, her response to abx was an important part of continuing on with treatment in the face of an ambiguous test.
That is also a low dose of amoxy. I was on 2500 mg. three times daily along with Probenecid that interacts with it to keep it in the blood stream longer.
Maybe you should clarify with him what he means by "move on" from Lyme. I wouldn't write him off at this point .... he might have ideas that will make you well .... see what he says in a month. Ask him questions ... write them down as you think of them so you have them handy for your appt.
He is right in that if you aren't responding to treatment, you need something else .... see what he thinks that something else is.
Posted by teresambear (Member # 15061) on :
Yes, this the same pres. you are speaking of. He said more or less something other than lyme your right I have to ask him to clarify.
Posted by teresambear (Member # 15061) on :
But, I also most say that it seemed to me he wanted to move on from this area completely. thanks Teresa
Posted by Vermont_Lymie (Member # 9780) on :
Sounds like you need to see an(other) llmd.
Best wishes.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Vermont_Lymie: Sounds like you need to see an(other) llmd.
Best wishes.
If you WERE seeing Dr Ra in NY, then you need to go back to him.
I've heard similar stories here on Dr C (NY). I don't get it.
Posted by teresambear (Member # 15061) on :
Dr. R. in Wading River was not giving me enough med. The problem is I need to see a llmd who takes insurance. If worst comes to worst I will go back to him. Anyone know of any other llmd who takes insuranc ?Unfortunately I can not afford a dr. who doesn't. Thanks Teresa
Posted by Michelle M (Member # 7200) on :
You will have a difficult time finding an LLMD who takes insurance, though some do.
Some LLMD's DO start you off on a rather low dose of doxy. It's just their preference, possibly because they feel you might not be able to tolerate a high dose, or they want to get your bacterial load down a bit before bumping up your dose. Many people have a VERY hard time on full-dose doxy!! (Me included in that number!!)
I'm pretty stunned to hear that about your second LLMD. Doesn't recognize Igenex, or the CD-57 test?? Huh? I think that if other things were ruled out and your symptoms pointed that way, your blot was compelling enough for a trial of antibiotics for sure.
Which doctor tested you for coinfections at LabCorp? The first or second doctor? Was that at your request because of insurance concerns? Those labs are truly awful at finding coinfections, FYI.
I'd find a way to go back to LLMD #1 and stick with him if at all possible.
Most LLMD's will treat empirically for coinfections even absent a positive test these days. However, you are REALLY early in treatment still. You could go months before seeing measurable improvement without worrying. Also, there's a further test available through IGeneX to narrow down results if you're uncertain.
Don't give up.
Michelle
Posted by Lymetoo (Member # 743) on :
From what teresa told me, doctor #1 is not a true LLMD and as she stated above, he was not giving her enough abx.
Teresa, What was the dosage and what was he giving you?
Posted by teresambear (Member # 15061) on :
LABCORP was used by dr. R for co-infections . He was giving me 100 mg. doxy 2 x a day for 8 weeks
Posted by teresambear (Member # 15061) on :
Dr. R is my first doctor.
Posted by seibertneurolyme (Member # 6416) on :
Hubby had one emergency appointment with Dr C in New York last December.
He has admitting privileges to the local hospital -- hubby ended up in the ER there. I think that is one of the reasons that this LLMD is very conservative -- by being associated with the hospital he tries not to "rock the boat" so to speak.
The LLMD suggested hubby find a more agressive LLMD for further treatment. He did prescribe Levaquin which had helped before and even wrote the Lyrica script which we waited 3 months to fill. He was a nice guy who did try to help us out even though he admitted that he had never seen a Lyme patient with hubby's symptoms of muscle rigors.
Also said he didn't know anything about the Fry lab and told us we were obsessing over Bartonella -- hubby's least treated infection.
I think I would try to find another LLMD if I were you. Finding the right doc is half the battle in getting better in my opinion.
Dr C used a local lab to test hubby for Lyme and coinfections -- as we expected everything came back negative.
Bea Seibert
Posted by Lymetoo (Member # 743) on :
Would someone PM teresa with names of any LLMD's in NY or nearby who take insurance?
Posted by Lymetoo (Member # 743) on :
Teresa...remember that a dr who takes insurance or who has hospital privileges will have restraints imposed on them that other doctors don't have to worry about.
Posted by WildCondor (Member # 434) on :
In my experience, Dr. C is terrible, always has been. He does not treat aggressive enough and he has a really obnoxious personality. How he is President of ILADS is a mystery to me and in my opinion takes away greatly from their credibility as an organization. Having been a patient of his (briefly) it was a terrible experience. I also accompanied other patients on visits to see him and it was always a disaster. Under treated, incomplete treatment, ignorance of co-infections, the whole shebang! Hate to say this but stay away from him!
Posted by daise (Member # 13622) on :
Hi teresambear,
In Lymeland there is a lot you need to know. It's overwhelming and sometimes confusing.
A real LLMD would not use LabCorp to test for coinfections.
Any doctor can say, "I'm an LLMD" just to get your business. LLMD stands for Lyme-literate MD. But it doesn't sound like he or she really is Lyme-literate.
Look for an LLMD who is also an ILADS doctor.
A real LLMD would not rely solely on any test for Lyme or TBI's.
Lyme and the coinfections are a clinical diagnosis. Testing helps.
daise
Edited: He's the same one who is now the ILADS president? How'd that happen?
[ 03. April 2008, 08:27 PM: Message edited by: daise ]
Posted by Lymetoo (Member # 743) on :
As for why he's president, I would think it's because the other drs who voted for him probably didn't know his Lyme treatment protocol, etc.
What a shame.
He's now off my list.
Posted by Lymen (Member # 6882) on :
This stuff is soooo disturbing. I hope there is an explanation.
Posted by teresambear (Member # 15061) on :
What I do not understand is why he told me bands 31, 39, 23-25 are irrelavent on an IGG. I can understand 30 and 41. My head is spinning. I am so scared what am I going to do ? TERESA
Posted by njlymemom (Member # 15088) on :
Teresa, I sent you a pm the other day. I agree with what everyone is telling you here. Please listen, they are on the mark. Something is wrong with the info you have received from this dr. The bands 39 and 41 are significant.The dosage of amox you were on is way too low. The llmd i use tests our amox level, there is a level range he finds results with. It works for us 4.
We all understand how difficult it is to sort out all this info when you are ill. I don't know of a llmd who takes insurance. The financial burden of this illness is just horrible.
I am still very new to this site, and having problems with my eyes and brain this week. Can anyone tell me where this dr. list is here? Not sure what doc your talking about.
Posted by teresambear (Member # 15061) on :
Maybe because he does not recognize Igenex. I cannot believe one women showed positive Bsrt from Igenex he disregarded. Does Igenex know that the pres. of the ILDAS disregards them as experamental and urreliable.I know they were reccomending him as a dr.. VERY STRANGE.
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