B.R. cont...
March '06 she woke up with red streaks on forearms, red lines across forehead, rest of face red blotches, and a feeling of being choked. Went away in a few days. Approx. same time for a 3 month period, asleep, both legs would lift off the bed and slam down- this happened continously through the night without her even being aware. Here, I witnessed in November, in her sleep her left arm would shoot out and retract rapidly- again without her knowledge. She & I went to the Bahamas for 2 weeks during same period. I woke at 5:00am one morning, went to check on her and saw her elbows on the bed, forearms and hands up at right angles to the bed, and her hands were doing strange clawlike movements. I went to ask her if she needed pain meds, she was asleep.
Her Lyme Test came up negative- but she had some markers and some indeterminates on others. A central line catheter was implanted in her chest in June '06 to receive antibiotics as well as oral antibiotics. The catheter was removed in Dec. '07 due to what was some oozing around the site. She got a lot worse over the following period though continued oral antibiotics.
Sept. '09- a new central line catheter in implanted in her chest again for continued antibiotic treatment combined with the orals.
Doctors expected marked improvement within the first 6 months in '06 which didn't happen. They're stumped- but, at least they're trying!
Poor thing has been dismissed by so many physicians in the past-
I SO APPRECIATE the ones that keep trying- THIS INCLUDES YOU, my friend.
Regards,
Reason
March '06 she woke up with red streaks on forearms, red lines across forehead, rest of face red blotches, and a feeling of being choked. Went away in a few days. Approx. same time for a 3 month period, asleep, both legs would lift off the bed and slam down- this happened continously through the night without her even being aware. Here, I witnessed in November, in her sleep her left arm would shoot out and retract rapidly- again without her knowledge. She & I went to the Bahamas for 2 weeks during same period. I woke at 5:00am one morning, went to check on her and saw her elbows on the bed, forearms and hands up at right angles to the bed, and her hands were doing strange clawlike movements. I went to ask her if she needed pain meds, she was asleep.
Her Lyme Test came up negative- but she had some markers and some indeterminates on others. A central line catheter was implanted in her chest in June '06 to receive antibiotics as well as oral antibiotics. The catheter was removed in Dec. '07 due to what was some oozing around the site. She got a lot worse over the following period though continued oral antibiotics.
Sept. '09- a new central line catheter in implanted in her chest again for continued antibiotic treatment combined with the orals.
Doctors expected marked improvement within the first 6 months in '06 which didn't happen. They're stumped- but, at least they're trying!
Poor thing has been dismissed by so many physicians in the past-
I SO APPRECIATE the ones that keep trying- THIS INCLUDES YOU, my friend.
Regards,
Reason
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WOW!! :-)
i believe (but mind you i am no doctor) that she definatly has issues with her sensory-motor neurons in her brian (the ones cordinating sene and movement. the fact that sudden environmental changes such as loud noises and wind set her body haywire are also alarming. i will have to do some research on lymes. as it very well could have had something to do with it. i know about lymes and the general symptomes and how dabilitating it can be to the joints. i also know that it is VERY difficult to clear and normally just "goes dorment" i wonder if the herpes 6 has anything to do with the bell's palsy or if it is from what ever is going on in her brain.
I'll get back to you but know there is a lot of (useful) information in these posts to digest.....
bear with me.... best regards.
:-)
i believe (but mind you i am no doctor) that she definatly has issues with her sensory-motor neurons in her brian (the ones cordinating sene and movement. the fact that sudden environmental changes such as loud noises and wind set her body haywire are also alarming. i will have to do some research on lymes. as it very well could have had something to do with it. i know about lymes and the general symptomes and how dabilitating it can be to the joints. i also know that it is VERY difficult to clear and normally just "goes dorment" i wonder if the herpes 6 has anything to do with the bell's palsy or if it is from what ever is going on in her brain.
I'll get back to you but know there is a lot of (useful) information in these posts to digest.....
bear with me.... best regards.
:-)
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B.R.
Forgot to mention a couple of things- She has arthritis in her right SI joint, degenerative disk disease and carpal tunnel. The jaw problem has been coming and going since '06, bell's palsey just in the last 3 weeks.
I don't know why you've latched on to my posting, I'm just SO THANKFUL that you have. I've taken her to 20 some doctors; all but one have dismissed her.
I've been searching for the "reason" and cure. She simply wants to know the cause-good or bad. If this is as good as it gets, and worse, so be it. She needs to know. Her greatest fear is that this is something that could affect her children's health in the future...
Thank you for BELIEVING!!!
May I ask what school you are attending? If this is too personal, please ignore and excuse this "snoop sister's" prying.
Reason
Forgot to mention a couple of things- She has arthritis in her right SI joint, degenerative disk disease and carpal tunnel. The jaw problem has been coming and going since '06, bell's palsey just in the last 3 weeks.
I don't know why you've latched on to my posting, I'm just SO THANKFUL that you have. I've taken her to 20 some doctors; all but one have dismissed her.
I've been searching for the "reason" and cure. She simply wants to know the cause-good or bad. If this is as good as it gets, and worse, so be it. She needs to know. Her greatest fear is that this is something that could affect her children's health in the future...
Thank you for BELIEVING!!!
May I ask what school you are attending? If this is too personal, please ignore and excuse this "snoop sister's" prying.
Reason
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Reason-
I'm attending Northern Illinois University.
not sure why i lached on but i guess its because i feel sorry for her and all that she has gone though. and not knowing sometimes is the worst feeling. also it reminds me of mystery diagnosis on discovery health channell. i like watching it because i figure hey maybe i'll come across someone some day and they have the same symptoms and i can let them know possibilities as to what they might have. thoes people too on that show have been dissmissed by numorous doctors and their problem blamed on everything from pain killer addictions to being crazy and depressed.
I wounder if perhaps the claw hand is because of her carpel tunnel syndrom as i read earlier that it can be caused by compressions of the ulnar nerve. although this seems to show a weakinign of different fingers depending on where the nerve is compresses at. it doesnt say much of the hand actually tensing up for a few minutes.
did you say that she was diagnosed with lymes disease??
arthritis would most likley be caused from that.
I'm attending Northern Illinois University.
not sure why i lached on but i guess its because i feel sorry for her and all that she has gone though. and not knowing sometimes is the worst feeling. also it reminds me of mystery diagnosis on discovery health channell. i like watching it because i figure hey maybe i'll come across someone some day and they have the same symptoms and i can let them know possibilities as to what they might have. thoes people too on that show have been dissmissed by numorous doctors and their problem blamed on everything from pain killer addictions to being crazy and depressed.
I wounder if perhaps the claw hand is because of her carpel tunnel syndrom as i read earlier that it can be caused by compressions of the ulnar nerve. although this seems to show a weakinign of different fingers depending on where the nerve is compresses at. it doesnt say much of the hand actually tensing up for a few minutes.
did you say that she was diagnosed with lymes disease??
arthritis would most likley be caused from that.
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B.R.-
She tested negative for Lyme though she did have markers on some bands and indeterminates on others. They have very specific guidlines for which bands are read as Lyme-maybe they need to expand on that reading?
Why did you come to this site? Are you also suffering from some affliction? If so, is there anything I might do to help?
I can't get over the time and thought you've put in trying to help us. Just know that all you've done means so much!
Regards,
Reason
She tested negative for Lyme though she did have markers on some bands and indeterminates on others. They have very specific guidlines for which bands are read as Lyme-maybe they need to expand on that reading?
Why did you come to this site? Are you also suffering from some affliction? If so, is there anything I might do to help?
I can't get over the time and thought you've put in trying to help us. Just know that all you've done means so much!
Regards,
Reason
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B.R.
I'm going to catch you up on what I know about Lyme Disease- could take me a while here to get it organized- hoperfully by tomorrow morning-
Just want to put it in that brainy head of yours to see what you think-
Reason
I'm going to catch you up on what I know about Lyme Disease- could take me a while here to get it organized- hoperfully by tomorrow morning-
Just want to put it in that brainy head of yours to see what you think-
Reason
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Reason-
ok sounds great... i know that late stages of lyme's disease can get into the nervous system and effect the brain.. but as to what extent im not sure. i wounder if the lyme's test can be done on CSF (cerebral spinal fluid)
there was a nother parasitic infection i am curious to investagate more... it causes ensephylitis in horses and is spread through opossum feces... a lot of parasites are zoonotic and since horses can get it why not people? it is possible that if this is what she has then she probably picked it up working with the wildlife.... let you know more on that idea when i have some time to research it more... it was in one of my veterinary/animal care books.... the fact that the doctors havent been able to detect anything makes me wonder if this is more of a rare disease/disorder.
more to come!!
ok sounds great... i know that late stages of lyme's disease can get into the nervous system and effect the brain.. but as to what extent im not sure. i wounder if the lyme's test can be done on CSF (cerebral spinal fluid)
there was a nother parasitic infection i am curious to investagate more... it causes ensephylitis in horses and is spread through opossum feces... a lot of parasites are zoonotic and since horses can get it why not people? it is possible that if this is what she has then she probably picked it up working with the wildlife.... let you know more on that idea when i have some time to research it more... it was in one of my veterinary/animal care books.... the fact that the doctors havent been able to detect anything makes me wonder if this is more of a rare disease/disorder.
more to come!!
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B.R.-
Lyme Disease is transmitted by the bite of a deer tick, and the disease is prevalent across the US and the rest of the world. Lyme Disease is a clinical diagnosis.
The disease is caused by a spiral-shaped bacteria (spirochete) called Borrelia burgdorferi. Interesting note* this bacteria was known in Europe more than 100 years ago. As many others in my age bracket, my maternal grandparents immigrated to the US in their teens. It has been proven that this bacteria can cross the placenta as well as the blood brain barrier. On another note, they are now looking at familia tremors to be an actual condition verses being something genetic.
Fewer than 50% of patients with Lyme Disease recall a tick bite or the typical "bulls-eye" rash associated with this disease.
The CDC surveillance criteria for Lyme Disease were devised to track a narrow band of cases for epidemiologic purposes. As stated on the CDC webstie, the surveillance criteria were never intended to be used as diagnostic criteria, nor were they meant to define the entire scope of Lyme Disease.
cont. next post...
Lyme Disease is transmitted by the bite of a deer tick, and the disease is prevalent across the US and the rest of the world. Lyme Disease is a clinical diagnosis.
The disease is caused by a spiral-shaped bacteria (spirochete) called Borrelia burgdorferi. Interesting note* this bacteria was known in Europe more than 100 years ago. As many others in my age bracket, my maternal grandparents immigrated to the US in their teens. It has been proven that this bacteria can cross the placenta as well as the blood brain barrier. On another note, they are now looking at familia tremors to be an actual condition verses being something genetic.
Fewer than 50% of patients with Lyme Disease recall a tick bite or the typical "bulls-eye" rash associated with this disease.
The CDC surveillance criteria for Lyme Disease were devised to track a narrow band of cases for epidemiologic purposes. As stated on the CDC webstie, the surveillance criteria were never intended to be used as diagnostic criteria, nor were they meant to define the entire scope of Lyme Disease.
cont. next post...
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B.R. cont.-
The ELISA screening test is the most typcially test done but is unreliable. The test misses 35% of culture proven Lyme Disease (only 65% sensitivity) and is unacceptable as the first step of a two-step screening protocol. By definition, a screening test should have at least 95% sensitivity.
Of patients with acute culture-proven Lyme Disease, 20-30% remain seronegative on serial Western Blot sampling. Antibody titer also appear to decline over time; thus while the Western Blot may remain positive for months, it may not always be sensitive enough to detect chronic infection with the Lyme spirochete.
For "epidemiological purposes", the CDC eliminated from the Western Blot analysis the reading of bands 31 and 34. These bands are so specific to Borrelia burgdorferi that they were chosen for vaccine development. Since a vaccine for Lyme Disease is currently unavailable, a positive 31 or 34 band is highly indicative of Borrelia burgdorferi exposure. Yet these bands are not reported in commerical Lyme tests.
cont. next post-
The ELISA screening test is the most typcially test done but is unreliable. The test misses 35% of culture proven Lyme Disease (only 65% sensitivity) and is unacceptable as the first step of a two-step screening protocol. By definition, a screening test should have at least 95% sensitivity.
Of patients with acute culture-proven Lyme Disease, 20-30% remain seronegative on serial Western Blot sampling. Antibody titer also appear to decline over time; thus while the Western Blot may remain positive for months, it may not always be sensitive enough to detect chronic infection with the Lyme spirochete.
For "epidemiological purposes", the CDC eliminated from the Western Blot analysis the reading of bands 31 and 34. These bands are so specific to Borrelia burgdorferi that they were chosen for vaccine development. Since a vaccine for Lyme Disease is currently unavailable, a positive 31 or 34 band is highly indicative of Borrelia burgdorferi exposure. Yet these bands are not reported in commerical Lyme tests.
cont. next post-
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B.R. cont-
When used as part of a diagnostic evaluation for Lyme Disease, the Western Blot should be performed by a laboratory that reads and reports all of the bands related to Borrelia burgdorferi. Laboratories that use FDA approved kits are restricted from reporting all of the bands, as they must abide by the rules of the manufacturer. These rules are set up in accordance the CDC's surveillance criteria and increase the risk of false-negative results.
There are 5 subspecies of Borrelia burgdorferi, over 100 strains in the US, and 300 strains worldwide. This diversity is thought to contribute to the antigenic variability of the spirochete and its ability to evade the immune system and antibiotic therapy, leading to chronic infection.
Testing for Babesia, Anaplasma, Ehrlichia, and Bartonella (other tick-transmitted organisms) shoud be performed. The presence of co-infection with these organisms points to probable infection with the Lyme spirochete as well. If these coinfections are left untreated, their continued presence increases morbidity and prevents successful treatment of Lyme Disease.
Cont. next post-
When used as part of a diagnostic evaluation for Lyme Disease, the Western Blot should be performed by a laboratory that reads and reports all of the bands related to Borrelia burgdorferi. Laboratories that use FDA approved kits are restricted from reporting all of the bands, as they must abide by the rules of the manufacturer. These rules are set up in accordance the CDC's surveillance criteria and increase the risk of false-negative results.
There are 5 subspecies of Borrelia burgdorferi, over 100 strains in the US, and 300 strains worldwide. This diversity is thought to contribute to the antigenic variability of the spirochete and its ability to evade the immune system and antibiotic therapy, leading to chronic infection.
Testing for Babesia, Anaplasma, Ehrlichia, and Bartonella (other tick-transmitted organisms) shoud be performed. The presence of co-infection with these organisms points to probable infection with the Lyme spirochete as well. If these coinfections are left untreated, their continued presence increases morbidity and prevents successful treatment of Lyme Disease.
Cont. next post-
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B.R. cont-
Most cases of chronic Lyme Disease require an extended course of antibiotic therapy to achieve symptomatic relief. Many patients with chronic Lyme Disease require treatment for 1-4 years, or until the patient is symptom free. There are no tests currently available to prove that the organism is eradicated or that the patient with chronic Lyme Disease is cured.
Lyme Disease has been called "the great imitator" and should be considered in the differential diagnosis of rheumatologic and neurologic conditions, as well as chronic fatigue syndrome, fibromyalgia, somatization disorder and any difficult to diagnose multi-system illness.
This information has been provided by ILADS (International Lyme and Associated Disease Society)
cont.next post-typical symptoms...
***edited by moderator*** web addresses not allowed
Most cases of chronic Lyme Disease require an extended course of antibiotic therapy to achieve symptomatic relief. Many patients with chronic Lyme Disease require treatment for 1-4 years, or until the patient is symptom free. There are no tests currently available to prove that the organism is eradicated or that the patient with chronic Lyme Disease is cured.
Lyme Disease has been called "the great imitator" and should be considered in the differential diagnosis of rheumatologic and neurologic conditions, as well as chronic fatigue syndrome, fibromyalgia, somatization disorder and any difficult to diagnose multi-system illness.
This information has been provided by ILADS (International Lyme and Associated Disease Society)
cont.next post-typical symptoms...
***edited by moderator*** web addresses not allowed
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B.R. cont-
Typcial Symptoms among patients with neuropsychiatric Lyme Disease-
Fatigue, Low grade fevers, Night sweats, Migrating arthralgias, Muscle pains, Sleep disturbances, Frequent and severe headaches, Cranial nerve disturbance, Sharp stabbing pains, Multifocal numbness, Thinking problems, Cognitive overload, Brain fog, Sensory Hyperacuities, Spacial or geographic orientation problems, Problems with speech & fluency.
Less common neurologic syndromes-
Partial complex seizures, Multiple sclerosis like illness (many people are being diagnosed and treated for MS when it is actually Lyme), Dementia like illness (Sis's mother-in law died from Alzheimer's-she also had such a positve Lyme test the year prior-could there be a connection?), Guillain-Barre syndrome, Strokes, Tullio phenomenon.
Psychiatric symptoms in adults-
Irratability, Poor frustration tolerance, panic, obsessive/compulsive.
Neuropsychiatric problems in children-
Headaches, Disturbances or behavior or mood, Fatigue, Problems with auditory and visual attention (some mistakenly diagnosed with ADD.
Fluctuating Symptoms- worse on some days, remarkably better on others without clear cause.
Cont. next post-
Typcial Symptoms among patients with neuropsychiatric Lyme Disease-
Fatigue, Low grade fevers, Night sweats, Migrating arthralgias, Muscle pains, Sleep disturbances, Frequent and severe headaches, Cranial nerve disturbance, Sharp stabbing pains, Multifocal numbness, Thinking problems, Cognitive overload, Brain fog, Sensory Hyperacuities, Spacial or geographic orientation problems, Problems with speech & fluency.
Less common neurologic syndromes-
Partial complex seizures, Multiple sclerosis like illness (many people are being diagnosed and treated for MS when it is actually Lyme), Dementia like illness (Sis's mother-in law died from Alzheimer's-she also had such a positve Lyme test the year prior-could there be a connection?), Guillain-Barre syndrome, Strokes, Tullio phenomenon.
Psychiatric symptoms in adults-
Irratability, Poor frustration tolerance, panic, obsessive/compulsive.
Neuropsychiatric problems in children-
Headaches, Disturbances or behavior or mood, Fatigue, Problems with auditory and visual attention (some mistakenly diagnosed with ADD.
Fluctuating Symptoms- worse on some days, remarkably better on others without clear cause.
Cont. next post-
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B.R. cont-
I've also wondered if she could have gotten something from one of her animals... I just try to keep ruling things out. Is it Lyme Disease, or maybe started as that- then what happened?
We grew up in a rural setting- removing ticks was an every day occurence without any thought of disease. This disease wasn't even given a name in this country until the early 1980's when an entire community in Lyme, CT broke out with horrible, unexplained symptoms.
Furthermore, 18 month old babies have been diagnosed with Lyme. How is this possible unless it was given to them unknowingly by their mothers?
Sis and I had some similar symptoms in our twenties of long lasting flu-like symptoms, terrible rolling headaches, dizziness and passing out- we were living in different cities. Both of us have had abnormal brain mri's...
Why have the women of the family been hit so hard? I think she and I should be part of a clinical study of siblings; maybe it could help others- cont. next post-
I've also wondered if she could have gotten something from one of her animals... I just try to keep ruling things out. Is it Lyme Disease, or maybe started as that- then what happened?
We grew up in a rural setting- removing ticks was an every day occurence without any thought of disease. This disease wasn't even given a name in this country until the early 1980's when an entire community in Lyme, CT broke out with horrible, unexplained symptoms.
Furthermore, 18 month old babies have been diagnosed with Lyme. How is this possible unless it was given to them unknowingly by their mothers?
Sis and I had some similar symptoms in our twenties of long lasting flu-like symptoms, terrible rolling headaches, dizziness and passing out- we were living in different cities. Both of us have had abnormal brain mri's...
Why have the women of the family been hit so hard? I think she and I should be part of a clinical study of siblings; maybe it could help others- cont. next post-
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B.R. cont-
I come from a large family- 6 siblings. The 5 males do display some signs of Lyme though they haven't been tested- they feel since Sis didn't have a positive Lyme test and she's not cured that it is voodoo science. I've been careful in the past to not let them see or hear from me on my bad days... I just wanted the focus on her-
You're a dream come true for me. You give me hope. Someone who's willing to talk about it and look at this stuff-
Very Best Regards,
Reason
I come from a large family- 6 siblings. The 5 males do display some signs of Lyme though they haven't been tested- they feel since Sis didn't have a positive Lyme test and she's not cured that it is voodoo science. I've been careful in the past to not let them see or hear from me on my bad days... I just wanted the focus on her-
You're a dream come true for me. You give me hope. Someone who's willing to talk about it and look at this stuff-
Very Best Regards,
Reason
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Reason-
GREAT JOB ON LYMES...... i believe this is DEFFINATLY something we need to invesigate furthur..... i have some stuff to this morning/afternoon but will post later this afternoo-evening.
once againg NICE..... :-D
GREAT JOB ON LYMES...... i believe this is DEFFINATLY something we need to invesigate furthur..... i have some stuff to this morning/afternoon but will post later this afternoo-evening.
once againg NICE..... :-D
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