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Old 09-21-2007, 05:16 PM #1 (permalink)
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Default My appt today....lyme dr.

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
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Old 09-21-2007, 05:25 PM #2 (permalink)
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Great news Jamie - looks more and more like Lyme for you. I am envious to be completely honest! But happy for you too. Have a great weekend with your family.
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Old 09-21-2007, 06:14 PM #3 (permalink)
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Treat it aggressively and it should work!
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Old 09-21-2007, 06:23 PM #4 (permalink)
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I scheduled an appointment to see a lyme doctor/fibromyalgia dr. CJ thank you for the suggestion. I literally still have the mark on me from when the tick bit me, so hopefully I will finally have some answers. . .

Jaime I am glad that you have the answers that you are seeking.

Have a great holiday weekend!
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Old 09-21-2007, 06:40 PM #5 (permalink)
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I'm praying like crazy that this will work for you Jamie. It will probably be a very rough road, but hang in there because I don't think it can hurt. I know how good it feels to have a doc sit there and believe what you are saying and act as if they really, really want to make you better. No better feeling in the world at this point, right? Have a great trip and rain is beautiful too! Leslie
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Old 09-21-2007, 07:30 PM #6 (permalink)
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Dear Jamie,

I'm glad you felt this doctor seems to have genuine interest in your symptoms!

I sincerely hope that your treatment takes care of the problem.

Hang in there! We will be interested in how you are doing. Be brave!
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Old 09-22-2007, 09:59 AM #7 (permalink)
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Way to go Jamie! We were all pulling for somehting treatable for you. Let's hope this new doc hit the nail on the head! Enjoy your weekend and we'll "talk" more later. Cindy
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Old 09-22-2007, 11:23 AM #8 (permalink)
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that is a good idea pldo, esp. if you responded to rocephin treatment. According to him, it is the absolute best abx out there and is a very broad range treatement. We will be covering many basis with this, including neruo.

Time will tell, hopefully i will get better and be able to fight for PALS that can't fight for themselves!

rgds to all

jamie
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Old 09-22-2007, 02:42 PM #9 (permalink)
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Wow, that is good news. I hope this new doctor is the one! I'm taking your info to my husband's next appt, and hopefully they will try something like this too. You are certainly an inspiration! Good luck with your treatment! Pam B in Va
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Old 09-23-2007, 02:09 AM #10 (permalink)
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Good stuff Jamie. Have a good trip.
AL.
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Old 09-23-2007, 06:00 PM #11 (permalink)
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Jamie...go get better..that is wonderful.
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Old 09-23-2007, 06:07 PM #12 (permalink)
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Quote:
Originally Posted by Jamiet
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

Oh, Jamie have a fun trip. Enjoy your family! God bless!

Irma
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Old 09-23-2007, 11:23 PM #13 (permalink)
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Hi jamie I had a realestate man over my house to list it and he was telling me he had a bad case of lymes It wasnt until 3 years after symptoms was it found. He finally got help from a lymes MD in Penn. He was placed on several different kinds of antibiotics for six months He also said he felt worse before he got better. he said he felt like he was going to die before he met this doctor in penn. He had floaters headaches memory loss speech distrubance back and neck pain muscle loss fatigue I can get his name if you want to see his doctor Good luck Pat
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Old 09-26-2007, 10:50 PM #14 (permalink)
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YOu are reading real stories now of what lyme does to you. I am fore sure, some on here have it, esp. some of the NON-ALS'ers. I hope i can help start a first list of many. I am sure that lyme sometimes causes ALS.

Pat....your friend....doens't that story sound alot like ours?

rgds,

jamie
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