Jamiet
08-29-2007, 04:16 PM
Ok guys,
You all first know i'm skeptical of all of this crap...esp. the lyme.
So, had my follow up with the LLMD (Lyme Literate MD)...... Ya'll, this is literally, the first doctor that really sat there, really REALLY listened to me......and is really sincere about whats up and you know...even if he is flat out wrong about this, which...i'm beginning to think it is really possible based upon my discussions with lasagne noodle....tongue people...lol...this guy was about the most sincere doctor i've met.
Then...he tells me, i'm one of the most aggressive cases he's ever seen......He is the lyme expert for 3 states around us......GREAT YALL....That makes me feel really good huh!!! I'm still an exception....i should bought that damn lotter ticket, we could have all gone to the carribean with personal chaparones..lol
But...i convinced him to put me on Ceftriaxone (Rocephin). He said its the best abx out there, but he said i have babesia. i was literally sweating in front of him, with the constant chills....classic symptoms of it. he stated i have a very agressive case and it needs to be aggressively treated. I hope he's right, but what other explanation do we have for me being crazy huh...
In short, i have to have a mediport put in next week, as an IV will tear up my veins and a PICC line is dangerous to say the least...so...it's the best option. I will have 4 - 6 months minimum, 2 x's a day, 4 days a week. Also, i have to try to get back on the mepron, as that is about the only thing that will kill the babesia.
I guess the good thing, is ceftriaxone is a neuroligical treatement and ALS treatement also, so i will cover basis huh!! He looked over all my reports and said, you saw the best in the area, they must be right and based upon 5 neuros, 2 gp's, 1 internist, you likely 99% have lyme, but...the only way we will know for sure is if you react to treatment, i am too far into it for testing to be accurate.
Funny thing...my stepmom today tells me...hmm. don't you remember when i pulled ticks off your back, like 10 of them. Your brother also had like 6, she specifically remembers it because it was very gross and she had to dig them out of our back..... This was 11 years ago...it would be a good explanation of why it's wreaking havoc on me neurologically.
I continue to be a research experiement, but i have to tell you, just to have a doctor understand and relate to you was to say the least, satisfying, even if he turns out to be wrong.
I am going to go forward with this, this is the only thing left not really ruled out. I have to...he said if i don't get this fixed, i will "fall off the cliff"....i dont' know what that meant, but it sounds like he's concerned and going to aggressively try to fix this, right or wrong.
I have alot of respect for this guy, he seems pretty legit and my wife was very impressed with him.
I'll keep you all posted of course...i hope...i can be of help to people here, als or not. Mabye, we will find some answers for some of us searching, either way, you guys and gals all have a friend for life here.
I'm off to Destin, FL with the family for the holiday.....(it's supposed to rain all 4 days there...like 60%)...that figures with about everything i do....i'm snakebit...lol
I don't have any fish oil to sell AL, but maybe we can find a few solutions for some...lol...if i had fish oil that worked for PALS, i would give it to you!!!
take care yall, give the kids, grandkids and extra hug and kiss.....remember, every day you get to open your eyes is a great day....everything else is just a bonus (even the bad stuff).!!! Enjoy the holiday weekend.
Jamie
You all first know i'm skeptical of all of this crap...esp. the lyme.
So, had my follow up with the LLMD (Lyme Literate MD)...... Ya'll, this is literally, the first doctor that really sat there, really REALLY listened to me......and is really sincere about whats up and you know...even if he is flat out wrong about this, which...i'm beginning to think it is really possible based upon my discussions with lasagne noodle....tongue people...lol...this guy was about the most sincere doctor i've met.
Then...he tells me, i'm one of the most aggressive cases he's ever seen......He is the lyme expert for 3 states around us......GREAT YALL....That makes me feel really good huh!!! I'm still an exception....i should bought that damn lotter ticket, we could have all gone to the carribean with personal chaparones..lol
But...i convinced him to put me on Ceftriaxone (Rocephin). He said its the best abx out there, but he said i have babesia. i was literally sweating in front of him, with the constant chills....classic symptoms of it. he stated i have a very agressive case and it needs to be aggressively treated. I hope he's right, but what other explanation do we have for me being crazy huh...
In short, i have to have a mediport put in next week, as an IV will tear up my veins and a PICC line is dangerous to say the least...so...it's the best option. I will have 4 - 6 months minimum, 2 x's a day, 4 days a week. Also, i have to try to get back on the mepron, as that is about the only thing that will kill the babesia.
I guess the good thing, is ceftriaxone is a neuroligical treatement and ALS treatement also, so i will cover basis huh!! He looked over all my reports and said, you saw the best in the area, they must be right and based upon 5 neuros, 2 gp's, 1 internist, you likely 99% have lyme, but...the only way we will know for sure is if you react to treatment, i am too far into it for testing to be accurate.
Funny thing...my stepmom today tells me...hmm. don't you remember when i pulled ticks off your back, like 10 of them. Your brother also had like 6, she specifically remembers it because it was very gross and she had to dig them out of our back..... This was 11 years ago...it would be a good explanation of why it's wreaking havoc on me neurologically.
I continue to be a research experiement, but i have to tell you, just to have a doctor understand and relate to you was to say the least, satisfying, even if he turns out to be wrong.
I am going to go forward with this, this is the only thing left not really ruled out. I have to...he said if i don't get this fixed, i will "fall off the cliff"....i dont' know what that meant, but it sounds like he's concerned and going to aggressively try to fix this, right or wrong.
I have alot of respect for this guy, he seems pretty legit and my wife was very impressed with him.
I'll keep you all posted of course...i hope...i can be of help to people here, als or not. Mabye, we will find some answers for some of us searching, either way, you guys and gals all have a friend for life here.
I'm off to Destin, FL with the family for the holiday.....(it's supposed to rain all 4 days there...like 60%)...that figures with about everything i do....i'm snakebit...lol
I don't have any fish oil to sell AL, but maybe we can find a few solutions for some...lol...if i had fish oil that worked for PALS, i would give it to you!!!
take care yall, give the kids, grandkids and extra hug and kiss.....remember, every day you get to open your eyes is a great day....everything else is just a bonus (even the bad stuff).!!! Enjoy the holiday weekend.
Jamie
