B.R.
I have more info on Lyme Disease when and if you're ready for it. You've spent so much time on us already- I want to make sure that you focus on your studies; you need a life too.
Many problems with Lyme stem from in-adequate testing, most medical professionals are not knowlegeable on the subject, (including clinics of excellence), and antiquated treatment guidelines.
If you want a subject you can really stick your teeth into- this is it. The number of known cases each year are startling... just think of the ones not diagnosed!
Thank you so much! But take time for you!!!
Reason
I have more info on Lyme Disease when and if you're ready for it. You've spent so much time on us already- I want to make sure that you focus on your studies; you need a life too.
Many problems with Lyme stem from in-adequate testing, most medical professionals are not knowlegeable on the subject, (including clinics of excellence), and antiquated treatment guidelines.
If you want a subject you can really stick your teeth into- this is it. The number of known cases each year are startling... just think of the ones not diagnosed!
Thank you so much! But take time for you!!!
Reason
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hey, i would deffinatly check lymes at the top of our list as of now. like you said the tests are not that sensitive, antibodie titers lower after about 4 years, and it fits lots of the symptoms that she is having including Bell's palsy. (just read that today) since it can cross the blood brain barrier and start affecting the brain in late stages it makes sense that such a wide array of symptomes can be exhibated. it depends what area of the brain it attacks if it atacks crainial nerve 7 (facial nerve) guess what?? bell's palsy! attacks the primary motor cortex... yup the planning, coordination and exicution of voluntary muscle movement is affected. perhaps the jerkyness of the limbs and muscle twitches....
hair loss is still a bit confusing but who knows
what are your thoughts?
hair loss is still a bit confusing but who knows
what are your thoughts?
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B.R.-
Yes, after reviewing everything again, I'm thinking it is due to Lyme also-given her symptomology, how closely we paralled one another in our twenties, and my very positive Lyme test. Her problem is getting treatments approved with her negative test. Treatment guidelines set by the CDC have not changed since the 1980's- 14 to 21 days of antibiotics should due the trick. In a brain autopsy there is a slide showing this spirochete half in and half out of a cell.
Doctor is trying to get a treatment approved where they would infuse purified gamma globulins using her central line catheter. This treatment is currently being used on cancer patients as well as severe cases of hepatitis.
I'll be headed out of town this morning and returning the 20th- just in case you write and I don't respond is because internet service there can be a little dicey.
It's so helpful to have a fresh pair of eyes looking at this. Thank You! You're Great!
Reason
Yes, after reviewing everything again, I'm thinking it is due to Lyme also-given her symptomology, how closely we paralled one another in our twenties, and my very positive Lyme test. Her problem is getting treatments approved with her negative test. Treatment guidelines set by the CDC have not changed since the 1980's- 14 to 21 days of antibiotics should due the trick. In a brain autopsy there is a slide showing this spirochete half in and half out of a cell.
Doctor is trying to get a treatment approved where they would infuse purified gamma globulins using her central line catheter. This treatment is currently being used on cancer patients as well as severe cases of hepatitis.
I'll be headed out of town this morning and returning the 20th- just in case you write and I don't respond is because internet service there can be a little dicey.
It's so helpful to have a fresh pair of eyes looking at this. Thank You! You're Great!
Reason
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B.R.-
Also, I'm beginning to think that we were born with this bacteria present in our system rather than being bitten by a tick. If this is true, think of the ramifications!
Pharmaceutical companies have been working since the 1980's trying to develop a vaccine- still nothing.
Thoughts?
Reason
Also, I'm beginning to think that we were born with this bacteria present in our system rather than being bitten by a tick. If this is true, think of the ramifications!
Pharmaceutical companies have been working since the 1980's trying to develop a vaccine- still nothing.
Thoughts?
Reason
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hey reason,
Merry Christmas! how was your trip and Christmas?
How is your sister doing? have you guys tried getting any other diagnosises or persued lyme's any further?
just getting an update. i'm sure we'll get to the bottom of this i think it is possible that you guys may have picked it up at birth but why would it take 19 years to show any symptomes what so ever?
talk to you later 8)
Merry Christmas! how was your trip and Christmas?
How is your sister doing? have you guys tried getting any other diagnosises or persued lyme's any further?
just getting an update. i'm sure we'll get to the bottom of this i think it is possible that you guys may have picked it up at birth but why would it take 19 years to show any symptomes what so ever?
talk to you later 8)
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B.R.-
Had a great Christmas! Not everyone could make it due to being snown in-still a marvelous time! How was yours?
Sis is going to a pain clinic-hope that helps that part. She sees a new neurologist on Jan 12th. I'm hoping with his help she'll be approved for the gamma globulin infusion. So far, not approved by insurance. It's a very costly treatment and they wanted to see a positive on her EMG Test: permanent nerve damage.
I'm thinking this bacteria takes a long time to be able to attack the nervous system...
I have more info on Lyme should you want it- I also have sis's and my 2008 brain MRI's on disks I'd really like to share with you- If it's okay with you, I'll try to find you at NIU-not sure if it would work, but I would write to the head of Biochemistry there...
Thanks for checking in-
Reason
Had a great Christmas! Not everyone could make it due to being snown in-still a marvelous time! How was yours?
Sis is going to a pain clinic-hope that helps that part. She sees a new neurologist on Jan 12th. I'm hoping with his help she'll be approved for the gamma globulin infusion. So far, not approved by insurance. It's a very costly treatment and they wanted to see a positive on her EMG Test: permanent nerve damage.
I'm thinking this bacteria takes a long time to be able to attack the nervous system...
I have more info on Lyme should you want it- I also have sis's and my 2008 brain MRI's on disks I'd really like to share with you- If it's okay with you, I'll try to find you at NIU-not sure if it would work, but I would write to the head of Biochemistry there...
Thanks for checking in-
Reason
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Reason,
i had a great Christmas,
yes it does take a while for the bacteria to reach the nervous system. also lymes likes to hide on the body and lay dormate for a while. i too would like some deffinate proof that this she has it but that is very hard to get especially in late infections. i would bring up or tell her to bring up some of the other diagnosises such as MS and Huntington's just to see what the new neurologist thinks.
i would love to see thoes MRI images. how can i get them????
they are probably too big to send via email. are you near NIU??
or could they be sent by mail?
just let me know
i had a great Christmas,
yes it does take a while for the bacteria to reach the nervous system. also lymes likes to hide on the body and lay dormate for a while. i too would like some deffinate proof that this she has it but that is very hard to get especially in late infections. i would bring up or tell her to bring up some of the other diagnosises such as MS and Huntington's just to see what the new neurologist thinks.
i would love to see thoes MRI images. how can i get them????
they are probably too big to send via email. are you near NIU??
or could they be sent by mail?
just let me know
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B.R.-
Good Morning! Yes, I've given her a list of things from you to pass on to her new doctor; possible diagnoses, difusion weighted MRI, brain disturbance at cranial nerve 7 (for Bells Palsey) etc.
I'm sure I could send the MRI photos via email- might take a few. Also, not that far from you- go north a lot and west some. I pass by you on my trips to Chicago for work every 4 to 6 weeks...
Regards,
Reason
Good Morning! Yes, I've given her a list of things from you to pass on to her new doctor; possible diagnoses, difusion weighted MRI, brain disturbance at cranial nerve 7 (for Bells Palsey) etc.
I'm sure I could send the MRI photos via email- might take a few. Also, not that far from you- go north a lot and west some. I pass by you on my trips to Chicago for work every 4 to 6 weeks...
Regards,
Reason
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hey, when is your next trip? i work on a lab in Montgomery hall (biology Building) but im not always there. what you could do if you wanted is drop the disk off in Pat McCarthy's office on the main floor. he is a good friend of mine and basicaly lives there. he can then give it to me when i stop by.
THANKS and tell your sister to keep hopefull. and good luck
THANKS and tell your sister to keep hopefull. and good luck
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Hi B.R.-
Sorry for the delay- site has not been allowing me to log in the last couple of days...
I have all of the info I need to mail you C/O Pat McCarthy the disks- I'll send them out on Mon, Jan 4th.
Thanks for the kind words and support! We'll nail this thing yet!!!
Regards,
Reason
Sorry for the delay- site has not been allowing me to log in the last couple of days...
I have all of the info I need to mail you C/O Pat McCarthy the disks- I'll send them out on Mon, Jan 4th.
Thanks for the kind words and support! We'll nail this thing yet!!!
Regards,
Reason
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hey reason, hows your sister doing??
GOOD NEWS!!!! well maby.... i was surfing the web looking for a diagnosis for a condition that a friend of mine has with his "manhood" if ya know what i mean. and i came across this website it is a symptom checker, questionair. it is highly detailed and i figured that maby it could either give us some more options that we havent looked at/thought of or help confirm our suspicions of lymes.... it is a huge 9 page questionair so i would suggest either you and your sister doing it together or forwarding the website on to her.... thought you may be interested... good luck <br/> <br/>also have you mailed thoes disks to Pat yet? i Will be back up at NIU on Monday ready to start a new semester!!!! :? well good luck and let me know what you think" it is a symptom checker, questionair. it is highly detailed and i figured that maby it could either give us some more options that we havent looked at/thought of or help confirm our suspicions of lymes.... it is a huge 9 page questionair so i would suggest either you and your sister doing it together or forwarding the website on to her.... thought you may be interested... good luck
also have you mailed thoes disks to Pat yet? i Will be back up at NIU on Monday ready to start a new semester!!!! :? well good luck and let me know what you think
***edited by moderator*** web addresses not allowed
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B.R.-
Hope this finds its way to you- Contacted my internet provider; said they are aware that they are experiencing problems...
I was called out of town unexpectedly, so I have yet to mail the disks to you- I'll post when they have gone out-
I'll download the questionare as soon as I'm able to- sounds great!!!
Regards,
Reason
Hope this finds its way to you- Contacted my internet provider; said they are aware that they are experiencing problems...
I was called out of town unexpectedly, so I have yet to mail the disks to you- I'll post when they have gone out-
I'll download the questionare as soon as I'm able to- sounds great!!!
Regards,
Reason
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reason... the questionair is EXTREAMLY long... several hundred questions. this is because it has to be very general to catch any type of disease. it also gives you advice in dietary changes to make your overall lifestyle better. a lot of it i skipped when helping my friend. the things that i was 100% sure had nothing to do with his condition. also i found out afterwards that for a full opinois you have to pay to have a doctor review it.... but hey its better thatn nothing... check it out it will gibve oyu a preliminary report for no coast then for a more indepth report you have to pay.
thanks lookin for the disks soon :-)
good luck
thanks lookin for the disks soon :-)
good luck
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Hi B.R.-
Been thinking of you a lot! I'm back and thought I should look at her disk prior to mailing; been unable to crack it open using various programs. I have someone who teaches computer programs checking it out today to see if he is able to open it- I'll keep you posted on that, and when I mail them.
Tomorrow I'll download the questionaire.
Sis saw a new neurologist on the 12th- bad news. He thought she looked alright for her age-50; assured her it's not MS and that he'd see her again in June. She's walking like the old fashioned robot or someone with severe MS! She was devastated! I was too, but tried not to show it- I told her it was apparent he didn't have a clue as to what was going on and would rather pass her on to someone else...
The reason she saw him (he's in her home town) was because everyone thought it might speed up the process for getting the gamma globulin infusions approved and started...
He did order a lot of blood work and she had another MRI done on the 16th (T2 again- they said they weren't set up for the diffusion weighted- not sure what that means...) The MRI might not be reviewed by a radiologist for 2 or 3 weeks- results to follow.
She will be speaking with her main out of state doctor today to see what's next- I'm thinking another road trip to see a really good neurologist who's seen things like this before- she's never met with him.
That's all I have for now-I'll keep you posted...
Best Regards,
Reason
Been thinking of you a lot! I'm back and thought I should look at her disk prior to mailing; been unable to crack it open using various programs. I have someone who teaches computer programs checking it out today to see if he is able to open it- I'll keep you posted on that, and when I mail them.
Tomorrow I'll download the questionaire.
Sis saw a new neurologist on the 12th- bad news. He thought she looked alright for her age-50; assured her it's not MS and that he'd see her again in June. She's walking like the old fashioned robot or someone with severe MS! She was devastated! I was too, but tried not to show it- I told her it was apparent he didn't have a clue as to what was going on and would rather pass her on to someone else...
The reason she saw him (he's in her home town) was because everyone thought it might speed up the process for getting the gamma globulin infusions approved and started...
He did order a lot of blood work and she had another MRI done on the 16th (T2 again- they said they weren't set up for the diffusion weighted- not sure what that means...) The MRI might not be reviewed by a radiologist for 2 or 3 weeks- results to follow.
She will be speaking with her main out of state doctor today to see what's next- I'm thinking another road trip to see a really good neurologist who's seen things like this before- she's never met with him.
That's all I have for now-I'll keep you posted...
Best Regards,
Reason
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reason,
im really sorry to hear that howver it is a good thing its not MS because that disease really sucks and there no cure.... but it also sucks because we havce no clue what this is yet. but i guess that just means we have to look harder %-)
good luck with the computor program and hopefully we can get it to open.... just keep me posted
looking forward for more lab results and images soon :-)
best of luck
B.R.
im really sorry to hear that howver it is a good thing its not MS because that disease really sucks and there no cure.... but it also sucks because we havce no clue what this is yet. but i guess that just means we have to look harder %-)
good luck with the computor program and hopefully we can get it to open.... just keep me posted
looking forward for more lab results and images soon :-)
best of luck
B.R.
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