Hi, I was recently diagnosed (sorta) by my MD and from there I began reading all the info available online...and then some. What happened was that I was bitten in April and I got the bullseye rash so I know exactly when I got lyme. Mr dr 'called in' a 10 day pres of doxy within 3 weeks of the bite without an official diagnosis. By the first week of June I was 'clinically' diagnosed by my dr based on my symptoms and the pictures of my bullseye. He said I believe you have lyme and then ordered an ELISA blood test and just dismissed me without any further meds. 2 weeks later they call me to say it was neg. and again dismiss me on the phone. I beg for another appt thinking I will be retested and given doxy. That appt consisted of him calling lyme drs 'quacks' and telling me to trust him that he thinks we beat it with our aggressive treatment early on. (that 10 day dose) He also started to tell me how the bullseye could have come from something else even tho he was looking at the tick bite and bullseye all on one picture! He retracted his lyme diagnosis-unreal!! He again dismissed me with no meds. By now I am freaking out so long story short, I have now contacted a llmd ( Dr N in PA) and had the blood test done for Igenex. I am worried about time going without meds so I went to another dr and got a 28 day dose of doxy 100 x 2 daily. I figured better than nothing. She ordered the western blot. So now I am awaiting the results of both of those tests from 2 different drs. I cannot get in to see the llmd for 2 months yet. My concern is that I did not get this early enough and am I still going to progress to those horrific stages that I am hearing about? I watched UOS and my heart goes out to all of you lyme patients out there. I have been praying for you all. Does anyone know of this dr in PA, Dr N? And how do people afford them if they do not accept your insurance? this is working on my nerves so very bad that I don't want to do anything even tho my symptoms are mild. I cannot believe all the controversy on how to treat lyme. I am so sorry for this lengthy post. I am extremely confused and scared. Amy help you give me will be appreciated!
Posted by Jamers (Member # 28016) on :
There are some very knowledgeable people on here that can help you more, but what I do know it that 200mg of doxy daily is low. You should be on 400mg daily. Lyme is treated with double the normal doses of meds. I believe for an early tick bite its best to treat for 4-6 weeks.
That is great that you are so proactive. I think you will be fine, just try to get a higher dose, maybe show a doctor a copy of Dr. Burrascano's guidelines? Maybe you could call Dr. N and see if he could give you doxy??? And then follow up with him.
Thank you for praying for us!! Try not to worry :-)
Posted by ktkdommer (Member # 29020) on :
It is a lot to take in. You have been through what so many have- misdiagnosis and mistreatment.
Do you have any other kind of doctor that may give you doxy besides your MD?
I pay for 3 of us out of pocket and we drive 5 hours to see our doctor. We've learned to priortize our health. Some people have huge credit card debt, have 2nd mortgages or moved back home. It is very sad.
Once you get started in treatment you won't have to go as often and then it won't be so expensive.
Are you on a cancellation list? Have you contacted your state support group for help? Maybe they know a doc that can see you in between.
Best wishes!
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Lizbeth: Hi, I was recently diagnosed (sorta) by my MD and from there I began reading all the info available online...and then some.
What happened was that I was bitten in April and I got the bullseye rash so I know exactly when I got lyme. Mr dr 'called in' a 10 day pres of doxy within 3 weeks of the bite without an official diagnosis.
By the first week of June I was 'clinically' diagnosed by my dr based on my symptoms and the pictures of my bullseye. He said I believe you have lyme and then ordered an ELISA blood test and just dismissed me without any further meds.
2 weeks later they call me to say it was neg. and again dismiss me on the phone. I beg for another appt thinking I will be retested and given doxy.
That appt consisted of him calling lyme drs 'quacks' and telling me to trust him that he thinks we beat it with our aggressive treatment early on. (that 10 day dose)
He also started to tell me how the bullseye could have come from something else even tho he was looking at the tick bite and bullseye all on one picture!
He retracted his lyme diagnosis-unreal!! He again dismissed me with no meds. By now I am freaking out so long story short, I have now contacted a llmd ( Dr N in PA) and had the blood test done for Igenex.
I am worried about time going without meds so I went to another dr and got a 28 day dose of doxy 100 x 2 daily. I figured better than nothing. She ordered the western blot.
So now I am awaiting the results of both of those tests from 2 different drs. I cannot get in to see the llmd for 2 months yet.
My concern is that I did not get this early enough and am I still going to progress to those horrific stages that I am hearing about?
I watched UOS and my heart goes out to all of you lyme patients out there. I have been praying for you all. Does anyone know of this dr in PA, Dr N?
And how do people afford them if they do not accept your insurance? this is working on my nerves so very bad that I don't want to do anything even tho my symptoms are mild. I cannot believe all the controversy on how to treat lyme.
I am so sorry for this lengthy post. I am extremely confused and scared. Amy help you give me will be appreciated!
Breaking this up so everyone can read it. Back in a minute.
Posted by Lymetoo (Member # 743) on :
I agree .. It is great that you have been smart enough to be proactive for yourself. Some are not so and suffer for it.
If this is the dr I am thinking of, he is very good. Stay with him.
This also emphasizes how important it is to take photos of any rashes .. and even better that you got the tick in the photo!
Just dump the stupid doctor. He is running scared. What a weasel.
As for the money... you just do what you have to do in order to get well. I hope you can find the cash to do it.
You are on this early so just keep going. You will likely beat it!!
PS .. The best dosage is 200mg twice a day .. maybe a walk-in clinic is in your future?? Photo in hand?
Posted by Lizbeth (Member # 32663) on :
I did dump that dr. yes he is a weasel. I was so insulted and upset when he tried to tell me the bullseye might be from something else...even while looking at my picture of the bite and bullseye.
In 3 weeks, I am going to MD to an ID dr that has a good rep for treating lyme. At least better than my ex-family dr.
I am hoping she will give me a stronger dose of doxy to hold me til I see the llmd. If so then at least I would be covered with abx til I get to see him, right?
Or is it just as bad to be on doxy with too low a dose?
I had complete blood tests taken and all was good except I saw my WBC was 3.9 with the average to be at 3.8 - 10.
Do you think I need to be concerned about that and is that a bad sign?
Thank you for all the links - very informative. I read them all.
I wonder if I am considered to be stage 2 by now? scary