First off I wanted thank everyone for helping me out here, giving me advice, and helping me find an LLMD. The service that is offered here is invaluable and deeply appreciated.
For those of you who don't know my story about 3 weeks ago I had the classic bulls eye rash on my neck.
It did not start out that way so I ignored it for about 5 days until suddenly it turned into a very large bulls eye.
I knew what this bulls eye meant from hearing about lyme disease so I immediately went to my PCP and he diagnosed me with early lyme disease. And of course assured me that everything would be fine and I think we caught it early....yadda....yadda.
I just wanted to give you and update so far as to what's going on with me. Since my last time here I urged my primary care physician to give me some more antibiotics which he complied although I don't think he gave me enough so I am going to try again.
I was originally put on 20 days of amoxcillin and he gave me another 10 days worth, 500MG 3 times a day.
Through some wonderful people here on the board I was directed towards an LLMD in Jackson, NJ. If you live in NJ and want the information just send me a PM.
The earliest they could get me in is July 21st. I believe I have enough antibiotics till about the first week in July so I am hoping my PCP will extend my antibiotics till that date.
I am not so sure that he will based on the fact that he initially gave me 20 days and has already extended me another 10 days.
This does not surprise me because he is following the classic CDC protocol for treatment of the disease and doesn't seem to think long term treatment is necessary another reason to get an LLMD.
My PCP sent me out a week ago for a blood test and even though he thought it would come out negative and I suggested the same thing I think he was just trying to cover his *** because I was exhibiting some symptoms and asking him a million questions about the disease and treatment.
And of course it came out negative. I asked him to test me for the co-infections which he said he did but I don't believe him. He wants me to have a blood test again on July 2nd, which makes more sense considering I probably don't have enough antibodies working on the Lyme yet. So we will see what comes of that.
I started out bad chills, headaches, joint stiffness, and feel much better. I have good days and bad days more good than bad thankfully. My bad days aren't horrible mostly joint stiffness and exhaustion but they are few and far between.
I am not sure what this all means yet so we shall see. I won't feel better mentally until I see the LLMD.
Along with the antibiotics I am taking the recommended vitamin supplements that Dr. Busscano suggests, think I spelled his name wrong. Not sure if that is going to help me but I am taking them anyway.
So that's it for now. Hopefully I will have more concrete answers when I see my LLMD in July.
For anyone in the Philadelphia or surrounding areas Philadelphia Weekly, which I believe is a free paper, the cover story is called "Ticked Off" and has a big picture of a tick in someones hair with a bulls eye rash.
There is a very nice about 6 page story from the author who has Lyme and also an interview with Daryl Hall who by the way has Lyme. This I did not know. But it was a good read and hopefully will raise some more awareness of this mysterious disease.
[ 18. June 2008, 01:50 PM: Message edited by: LarryB ]
Posted by feelfit (Member # 12770) on :
Good Luck with the res of your treatment. You are definately on the right path.
If all goes well, hopefully we won't become long term friends.
Best to you, Feelfit
Posted by lou (Member # 81) on :
Doxycycline is the usual first line drug for early lyme because it also hits ehrlichia (which sometimes is a coinfection). However, it can cause extreme sun sensitivity, which might be a reason some docs would avoid it in summer.
The suggested length of time for early lyme varies quite a bit even among educated lyme treating doctors. Anywhere from a month to 6 weeks or even more. Chronic lymies like those on this forum would tend to err on the long side, considering what happens if it is undertreated. You have caught it early and that is a very good thing. Don't count on the tests to tell you much: antibodies take a while to develop and since you are already on abx, that may blunt the antibody response (per the FDA on lyme testing). The tests that you will be getting from your PCP are antibody tests.
Posted by Peedie (Member # 15355) on :
Lou
I see my PCP in a few days. She should have the results of my Igenex tests 188 & 189.
I am on a "waiting list" for a LLMD.
I'm having a bad day. Woke up with sore and swollen knee for no reason.
The neuro was buzzing my legs and I'm feeling it up into my head and neck.
When I see my PCP, can I ask her to put me on Doxy while I wait to see the LLMD?
If so...how much? Dr. Bs guide says 300 to 600 daily. Does that mean multiple doses? Does it mean start at 300 mg and ramp up?
Also he mentions minocycline. Is that an alternate choice or to be given along with?
I try to read Dr. B's guide from the Newbie Package - but I'm having a difficult time understanding it.
My PCP is not up to speed on Lyme's but I believe she will do what she can to help.
Thanks Peedie
Posted by lou (Member # 81) on :
It wouldn't hurt to ask your PCP for some doxy. The answer you get might depend on the test results. Many doctors use them as if they were infallible, which they aren't. If you get a negative or indeterminate result, it might help to show the PCP the FDA advisory on lyme testing, which should be somewhere in the newby links.
Don't know why there is a range in the suggested doxy dose. Weight and size of patient? Germ load? Sometimes a very infected person will have a massive herx on normal doses, which causes some docs to start low and ramp up.
Not sure minocin is a good substitute for doxy, as dizziness is a common side effect, and causes some people to have to stop it. Doxy, on the other hand, will make you extremely sun sensitive, so you will have to cover up and stay out of the sun.
Posted by bettyg (Member # 6147) on :
larry,
thanks for the update!
also, someone posted the link, and i copied the entire long article and darryl oats story here to the boards in another area!!
they also asked for FEEDBACK COMMENTS!!! ****************************************
Posted by LarryB (Member # 15738) on :
They don't have me on Doxycycline because of some allergic reactions I had with Zithromax and Sulfa.
Posted by Lymetoo (Member # 743) on :
Larry, another thing to consider about the testing he did is that the lab he uses is most likely worthless when it comes to lyme testing.
And if you're on abx at the time of Western Blot testing, it will skew the results. I'm not sure what it does to an ELISA test.
I'm glad you're going to see the LLMD .. can't come too soon!!
Sure wish you could get on doxy. Darn. At least you're receiving SOME treatment.
Hang in there!!!
Posted by Peedie (Member # 15355) on :
OK thanks for the help. Larry I'm glad you are going to get additional help. Better to stamp this thing out early.
Keep us informed of your progress.
Good Luck!!! Peedie
Posted by gemofnj (Member # 15551) on :
Originally posted by LarryB: Hello:
First off I wanted thank everyone for helping me out here, giving me advice, and helping me find an LLMD. The service that is offered here is invaluable and deeply appreciated.
Hi Larry,
So glad that you caught it early! And sought out other informative sources which helped you get to an LLMD.
I too am "early" but I think I have had it since January. And I had my first appt. with Dr. E in Jackson on June 9th. She is the rave in NJ for a knowledgeable LLMD. Be prepared to wait just in case, as my first visit I waited 2 1/2 hours.
Her style is a little different and her fees are cash. (you can send in to ins. company) and the fee was over $200 for the visit, and another $200 for the IgeneX and Bowen testing. Your testing fees may be different though. I really think it is worth it.
She also stated that for "early" lyme your results can come out negative while on antibiotics. For later lyme, it will come out positive. Because you had the classic bullseye it makes it easier to diagnose! That is great. I didnt have that, so you are definitely ahead of the game in getting help right away.
If you haven't read this guideline put out by Dr. Joseph B, (one of the country's top lyme doctors, now retired) here is the link. It is very informative and helpful.
Good luck with your appointment and hope you are feeling better soon! Posted by Tracy9 (Member # 7521) on :
Larry,
Your doing the right thing by taking your health into your OWN hands and not that of a single Dr.
My husband has lyme and has never recovered from the 2 weeks of treatment he got 10 years ago. Finally found a LLMD and is getting better.
Posted by TF (Member # 14183) on :
Larry, regarding the doctor's decision to test you early and then later, I recently spoke to a non-lyme literate doc who told me he does this for the following reason:
1st antibody test gives him a baseline to compare the 2nd antibody test to. He said he knows that the 1st test is too early to expect antibodies to the lyme.
Evidently, if the second test is more positive than the first, or if the 2nd test is just plain positive, then they may believe you have lyme.
Too bad they don't believe the rash is diagnostic. But, at least this is an explanation for WHY some non-LLMDs are doing the 2-test routine.
Posted by Geneal (Member # 10375) on :
I really don't see the need for a blood test for antibodies if you have/had a bulls-eye rash.
That in itself is conclusive of Lyme disease.
I hope you got a picture of it to show your LLMD.
Glad you are getting some treatment.
My husband takes 3000 mg of amoxi a day for Lyme.
Can't take zith. Can't take doxy as he works outside.
Glad you are going after it.
Hang in there.
Hugs,
Geneal
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Geneal: I really don't see the need for a blood test for antibodies if you have/had a bulls-eye rash.
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