Aa
Is this MS, Lyme, something else...can't get any answers.
About 5 years ago, there were a couple of months during which I would feel intermittently lightheaded . It was annoying but only happened a few times, so I didn't worry. I then went for about 2 years until the same lightheadedness came back, this time along with frequent urination (no urgency, just felt like I needed to go alot more than normal), mild headaches, and fatigue. This time, it occurred much more often over the two-month period I was having symptoms. In Fall of '04, the aforementioned symptoms returned, with the addition of visual floaters, and an increase in the intensity of the fatigue. Once again, this lasted for 2-3 months. Finally, in the last few months, all of the symptoms have returned once again (with the exception of headaches), with one more addition: very light intermittent tingly / numbness in parts of my left foot. I also have trouble concentrating sometimes.
I have have been to my GP many times, a neurologist whose opinion it was that I had no neurological deficit, and a sleep specialist. I also have been to an ophthalmologist about the floaters, who said she couldn't see the floaters through the slit lamp. I have had every blood test known to man, a normal head MRI in Oct. '04 , and a normal sleep study. Their latest thing was a Lyme test, from which I have yet to hear results. I am from KY, so Lymeseems. Does this sound neurological? Perhaps MS? Does it sound consistent with Lyme? The sometimes cognitive symptoms scare me, as I am a lawyer, and I kind of need to be able to think. Any suggestions as to what I should do next?
Thanks
I have have been to my GP many times, a neurologist whose opinion it was that I had no neurological deficit, and a sleep specialist. I also have been to an ophthalmologist about the floaters, who said she couldn't see the floaters through the slit lamp. I have had every blood test known to man, a normal head MRI in Oct. '04 , and a normal sleep study. Their latest thing was a Lyme test, from which I have yet to hear results. I am from KY, so Lymeseems. Does this sound neurological? Perhaps MS? Does it sound consistent with Lyme? The sometimes cognitive symptoms scare me, as I am a lawyer, and I kind of need to be able to think. Any suggestions as to what I should do next?
Thanks
I have suffered for 6 years now. My symptoms include headaches, eye pain, inflammation around and in my eyes, stiff neck, twitches in my head and body, electrical tingling in my head, confusion, irritability,unable to concentrate,anxiety, every time I go to read something I end up with a headache and am frustrated. I have been to over 12 doctors including a neurologist and have no answers. I have had a CT scan, an MRI, an EKG, a carotid dopler and have no answers. I medtioned to doctors lyme disease as a possible culprit and they all dismiss me and tell me I have migraines. I am sick of this pain knawing at me daily. The twitching and headaches drive me nuts. My eyes hurt all the time. I am sensitive to light and sound now. I don't know how much longer I can deal with this. I have gained so much weight. I am embaressed and humiliated and feel like metabolism has shut down. I think about suicide daily. I have tried to contact lyme doctors but none take my insurance. I live on SSI and have medicare and medicaid. I can't afford to get the help I need. My doctor just dismisses me and does nothing to help me. I am going to go see a infectious disease doctor and hope he is going to test me for neuro lyme or even knows anything about it. In one week 6 years ago these symptoms started. Before that I never in my life had these issues. If anyone knows of any way I can get the help I need please email me at ***@****
I have suffered for 6 years now. My symptoms include headaches, eye pain, inflammation around and in my eyes, stiff neck, twitches in my head and body, electrical tingling in my head, confusion, irritability,unable to concentrate,anxiety, every time I go to read something I end up with a headache and am frustrated. I have been to over 12 doctors including a neurologist and have no answers. I have had a CT scan, an MRI, an EKG, a carotid dopler and have no answers. I medtioned to doctors lyme disease as a possible culprit and they all dismiss me and tell me I have migraines. I am sick of this pain knawing at me daily. The twitching and headaches drive me nuts. My eyes hurt all the time. I am sensitive to light and sound now. I don't know how much longer I can deal with this. I have gained so much weight. I am embaressed and humiliated and feel like metabolism has shut down. I think about suicide daily. I have tried to contact lyme doctors but none take my insurance. I live on SSI and have medicare and medicaid. I can't afford to get the help I need. My doctor just dismisses me and does nothing to help me. I am going to go see a infectious disease doctor and hope he is going to test me for neuro lyme or even knows anything about it. In one week 6 years ago these symptoms started. Before that I never in my life had these issues. If anyone knows of any way I can get the help I need please email me at ***@****
I have suffered for 6 years now. My symptoms include headaches, eye pain, inflammation around and in my eyes, stiff neck, twitches in my head and body, electrical tingling in my head, confusion, irritability,unable to concentrate,anxiety, every time I go to read something I end up with a headache and am frustrated. I have been to over 12 doctors including a neurologist and have no answers. I have had a CT scan, an MRI, an EKG, a carotid dopler and have no answers. I medtioned to doctors lyme disease as a possible culprit and they all dismiss me and tell me I have migraines. I am sick of this pain knawing at me daily. The twitching and headaches drive me nuts. My eyes hurt all the time. I am sensitive to light and sound now. I don't know how much longer I can deal with this. I have gained so much weight. I am embaressed and humiliated and feel like metabolism has shut down. I think about suicide daily. I have tried to contact lyme doctors but none take my insurance. I live on SSI and have medicare and medicaid. I can't afford to get the help I need. My doctor just dismisses me and does nothing to help me. I am going to go see a infectious disease doctor and hope he is going to test me for neuro lyme or even knows anything about it. In one week 6 years ago these symptoms started. Before that I never in my life had these issues. If anyone knows of any way I can get the help I need please email me at ***@****
I have suffered for 6 years now. My symptoms include headaches, eye pain, inflammation around and in my eyes, stiff neck, twitches in my head and body, electrical tingling in my head, confusion, irritability,unable to concentrate,anxiety, every time I go to read something I end up with a headache and am frustrated. I have been to over 12 doctors including a neurologist and have no answers. I have had a CT scan, an MRI, an EKG, a carotid dopler and have no answers. I medtioned to doctors lyme disease as a possible culprit and they all dismiss me and tell me I have migraines. I am sick of this pain knawing at me daily. The twitching and headaches drive me nuts. My eyes hurt all the time. I am sensitive to light and sound now. I don't know how much longer I can deal with this. I have gained so much weight. I am embaressed and humiliated and feel like metabolism has shut down. I think about suicide daily. I have tried to contact lyme doctors but none take my insurance. I live on SSI and have medicare and medicaid. I can't afford to get the help I need. My doctor just dismisses me and does nothing to help me. I am going to go see a infectious disease doctor and hope he is going to test me for neuro lyme or even knows anything about it. In one week 6 years ago these symptoms started. Before that I never in my life had these issues. If anyone knows of any way I can get the help I need please email me at ***@****
I have suffered for 6 years now. My symptoms include headaches, eye pain, inflammation around and in my eyes, stiff neck, twitches in my head and body, electrical tingling in my head, confusion, irritability,unable to concentrate,anxiety, every time I go to read something I end up with a headache and am frustrated. I have been to over 12 doctors including a neurologist and have no answers. I have had a CT scan, an MRI, an EKG, a carotid dopler and have no answers. I medtioned to doctors lyme disease as a possible culprit and they all dismiss me and tell me I have migraines. I am sick of this pain knawing at me daily. The twitching and headaches drive me nuts. My eyes hurt all the time. I am sensitive to light and sound now. I don't know how much longer I can deal with this. I have gained so much weight. I am embaressed and humiliated and feel like metabolism has shut down. I think about suicide daily. I have tried to contact lyme doctors but none take my insurance. I live on SSI and have medicare and medicaid. I can't afford to get the help I need. My doctor just dismisses me and does nothing to help me. I am going to go see a infectious disease doctor and hope he is going to test me for neuro lyme or even knows anything about it. In one week 6 years ago these symptoms started. Before that I never in my life had these issues. If anyone knows of any way I can get the help I need please email me at ***@****
I also had the room spinning, lightheaded spells, headaches, migraines, always tired, digestive issues, suddenly one morning I stumbled and lost my ability to walk for 4 days and talk for hours, I had a stroke, I'm 43 and don't fit into ANY of the high risk categories!
I still keep going lightheaded, room spins and lost my balance on several occassions since put arms up to stay balanced, they think it's bouts of low blood pressure or an autonomic disorder. They also found that I have a PFO and are also going to be doing a biopsy for my nerve damage on my feet.
Is there a test for MS or is it the process of elimination when all the other tests come back negative. Could it be re-occuring mini-strokes TIAS, the latest CAT scan doesn't show any signs of a TIA will a TIA show up on a CAT? I would argue with some that TIAS don't have lasting effects... I feel that my therapy deteriated after some of these occassions. Is this true? They are not convinced that the PFO is the cause of this stoke, why all of a sudden would I continue to have lightheaded and balance issues.
I would suggest anybody that has numbing, forgetfulness, balance issues, ANYTHING that is very specific to the right or left side... go in and don't take no for an answer, ask for an MRI! Don't let them brush you off!
Everybody has different warning signs, I don't fit into ANY of the risk categories! My stroke felt like the the pressure of a blood pressure cuff and tingling of when your arm goes to sleep, from head to toe down the entire one side, it was like as if a line was drawn down the center from head to torso. I had a mini occassion and warning signs, numb leg, couldn't lift it one morning for several days, headaches, dizzy, all of the things listed above. DON'T LET THEM BLOW YOU OFF! TAKE THE WARNING SIGNS SERIOUSLY!
I have the best medical team in the area but also know that I'm a mystery case.
I still keep going lightheaded, room spins and lost my balance on several occassions since put arms up to stay balanced, they think it's bouts of low blood pressure or an autonomic disorder. They also found that I have a PFO and are also going to be doing a biopsy for my nerve damage on my feet.
Is there a test for MS or is it the process of elimination when all the other tests come back negative. Could it be re-occuring mini-strokes TIAS, the latest CAT scan doesn't show any signs of a TIA will a TIA show up on a CAT? I would argue with some that TIAS don't have lasting effects... I feel that my therapy deteriated after some of these occassions. Is this true? They are not convinced that the PFO is the cause of this stoke, why all of a sudden would I continue to have lightheaded and balance issues.
I would suggest anybody that has numbing, forgetfulness, balance issues, ANYTHING that is very specific to the right or left side... go in and don't take no for an answer, ask for an MRI! Don't let them brush you off!
Everybody has different warning signs, I don't fit into ANY of the risk categories! My stroke felt like the the pressure of a blood pressure cuff and tingling of when your arm goes to sleep, from head to toe down the entire one side, it was like as if a line was drawn down the center from head to torso. I had a mini occassion and warning signs, numb leg, couldn't lift it one morning for several days, headaches, dizzy, all of the things listed above. DON'T LET THEM BLOW YOU OFF! TAKE THE WARNING SIGNS SERIOUSLY!
I have the best medical team in the area but also know that I'm a mystery case.
Thanks for all the info. I began getting sick April 2005. I started with an episode of vertigo, 2 weeks later I began getting dizzy, nausea, and headache all the time and hasnt stopped ever since. This May 2006 I began having muscle fasiculations. Needless to say all my lab test have come back negative including 2 MRI's and CSF. So I told my dr I wanted to send my blood over to Igenex for testing after 3 Kaiser Lyme test(titer) came back negative, Guess what?? I came back positive for Igm western blot on 23-25kda and 31 and 34kda. On IGG WB I came back positive on 34kda and positive (++++) on 41kda. My Kaiser Dr. still doesnt beleive that it can be Lyme because I live in East Los Angeles, Ca. But before I got sick I had been to Big Bear, and 2 trips to Mexico not ever being aware of what Lyme disease was or what to watch out for. So they wouldnt treat me for it. Now I have been going to a Lyme literate Dr and he immediately started me on Amoxicillan, its been a month and I still dont feel OK. My symptoms have gotten worse. Fasicultaions have turned into twiching from head to toe 24 hours/day. He now wants to put me on IV antibiotics for a few months. In your opinion, Can this really be Lyme Disease?? Im still scared that it might be MS. I have been dizzy and many other MS like symptoms for over 1 1/2 years. Anyone else experiencing the same....??
Please help.....Richard
Please help.....Richard
Thanks for all the info. I began getting sick April 2005. I started with an episode of vertigo, 2 weeks later I began getting dizzy, nausea, and headache all the time and hasnt stopped ever since. This May 2006 I began having muscle fasiculations. Needless to say all my lab test have come back negative including 2 MRI's and CSF. So I told my dr I wanted to send my blood over to Igenex for testing after 3 Kaiser Lyme test(titer) came back negative, Guess what?? I came back positive for Igm western blot on 23-25kda and 31 and 34kda. On IGG WB I came back positive on 34kda and positive (++++) on 41kda. My Kaiser Dr. still doesnt beleive that it can be Lyme because I live in East Los Angeles, Ca. But before I got sick I had been to Big Bear, and 2 trips to Mexico not ever being aware of what Lyme disease was or what to watch out for. So they wouldnt treat me for it. Now I have been going to a Lyme literate Dr and he immediately started me on Amoxicillan, its been a month and I still dont feel OK. My symptoms have gotten worse. Fasicultaions have turned into twiching from head to toe 24 hours/day. He now wants to put me on IV antibiotics for a few months. In your opinion, Can this really be Lyme Disease?? Im still scared that it might be MS. I have been dizzy and many other MS like symptoms for over 1 1/2 years. Anyone else experiencing the same....??
Please help.....Richard
Please help.....Richard
Thanks for all the info. I began getting sick April 2005. I started with an episode of vertigo, 2 weeks later I began getting dizzy, nausea, and headache all the time and hasnt stopped ever since. This May 2006 I began having muscle fasiculations. Needless to say all my lab test have come back negative including 2 MRI's and CSF. So I told my dr I wanted to send my blood over to Igenex for testing after 3 Kaiser Lyme test(titer) came back negative, Guess what?? I came back positive for Igm western blot on 23-25kda and 31 and 34kda. On IGG WB I came back positive on 34kda and positive (++++) on 41kda. My Kaiser Dr. still doesnt beleive that it can be Lyme because I live in East Los Angeles, Ca. But before I got sick I had been to Big Bear, and 2 trips to Mexico not ever being aware of what Lyme disease was or what to watch out for. So they wouldnt treat me for it. Now I have been going to a Lyme literate Dr and he immediately started me on Amoxicillan, its been a month and I still dont feel OK. My symptoms have gotten worse. Fasicultaions have turned into twiching from head to toe 24 hours/day. He now wants to put me on IV antibiotics for a few months. In your opinion, Can this really be Lyme Disease?? Im still scared that it might be MS. I have been dizzy and many other MS like symptoms for over 1 1/2 years. Anyone else experiencing the same....??
Please help.....Richard
Please help.....Richard
UPDATE- My MRI/MRA came back normal however the MRI findings noted:
There are two or three small punctate foci of increased signal seen in the periventricular & subcortical deep white matter. This is a relatively non specific finding and can been seen with minimal ischemia/gliosis or demyelination. These have also been described in patients suffering from migraine headaches.
I think I read somewhere that sometimes people with Lyme disease have similar findings in the white matter of the brain?
EEG- also normal
The Lyme specific blood test my neuro ran was listed as a "Lyme AB Total w/ RFX WB'- this was also within normal limits. I assume that this was some sort of Western Blot test- but there was no reference to the banding that some of you have mentioned.
So basically, nothing came of my appt with the neuro & I am back to the "drawing board" as the say, trying to figure out where to go/what to do next.
Test results considered, does it seem worthwhile to see a lyme disease specialist at this point?
There are two or three small punctate foci of increased signal seen in the periventricular & subcortical deep white matter. This is a relatively non specific finding and can been seen with minimal ischemia/gliosis or demyelination. These have also been described in patients suffering from migraine headaches.
I think I read somewhere that sometimes people with Lyme disease have similar findings in the white matter of the brain?
EEG- also normal
The Lyme specific blood test my neuro ran was listed as a "Lyme AB Total w/ RFX WB'- this was also within normal limits. I assume that this was some sort of Western Blot test- but there was no reference to the banding that some of you have mentioned.
So basically, nothing came of my appt with the neuro & I am back to the "drawing board" as the say, trying to figure out where to go/what to do next.
Test results considered, does it seem worthwhile to see a lyme disease specialist at this point?
I see some similarities in the posts here and my situation...
Here's the run down on what has happened to my husband, Bruce. Any advice you have would be welcome, or any resources who might be able to help us determine if the problems he is having now are related to Lyme or not would be appreciated. If you know of a Lyme Specialist or a recommendation for a doctor where I can get a second opinion, let me know. Please feel free to forward this to anyone else who might be able to lead us to some help. I am getting a copy of Bruce's medical record after the Lyme result is returned. I'd like to find someone who has treated Lyme before and can just tell us if there's anything else we can be doing. There is a tremendous amount of information on the internet and a WIDE range of recommended treatments, so it is very confusing to know what is right. Thanks! --Kathy
On Wednesday, May 30, we were at our lake cabin at Nolin and Bruce noticed a circular rash on his chest and remembered pulling a small piece of a tick (he thinks?) from the same area a couple of weeks previous, maybe mid-May. The rash looked like ringworm to me and he had no other symptoms, so we decided to wait until we went home to Louisville on Sunday to have it checked out.
On Sunday, June 4, two doctors at Prompt Care confirmed that it looks like Lyme Disease. They told us that Bruce would probably feel worse before he felt better, but if Lyme disease is treated with antibiotics such as doxycycline, symptoms usually go away within 3 weeks of treatment
On Friday, June 9, Bruce was feeling pretty lousy, but went to see his regular doctor , Dr. Neider, to let her confirm the diagnosis. She did, based on the bulls eye rash, and she confirmed that he was taking the right dose of Doxycycline -- 100 mg twice a day. She also ordered blood work to confirm the Lyme Disease. (By the way, in my internet research since then many docs say that 100mg x 2 is not strong enough to knock out the lyme bacteria.)
On June 11, Bruce noticed two small patches of blisters to the left of the tick bite site, but no pain. We looked up Lyme Symptoms and learned that you can sometimes have rashes away from the tick bite so we just thought it was another symptom and ignored it.
Bruce continued to feel bad -- weak, lethargic, achy joints, low grade fever, and then on June 12, he began to feel so nauseous he couldn't even keep water down. That night, we went to the ER to get him rehydrated and some phenergen to stop the nausea. We weren't sure if this symptom was from the Lyme or the strong antibiotics. We were released home the next morning and Bruce slept most of the day and seemed to begin improving from that point on.
On June 15, Bruce said that he felt good enough to make a planned trip to Des Moines for his Uncle's 80th birthday and it went surprisingly well. Other than a few brief bouts of nausea, Bruce seemed to be growing stronger each day, although he still tired easily. We flew back home on Sunday, June 18 and Bruce went to work on Monday.
On Friday, June 23, Bruce went back in to see Dr. Neider, our family doc, for a follow-up and she told him the Lyme tests she did on 6/4 came back negative. Maybe we did them too early? She wants to repeat the test (this one came back later negative too). Bruce tells her he is having trouble urinating. She recommends he see his urologist and makes an appt for July 5. Bruce think it's his prostate, but he's only 53 yrs old.
June 25: Bruce has not been able to pee very well for several days and this weekend he started having some numbness around his groin area and the strange sensations on the soles of his feet, so he finally let me take him into the ER on Sunday afternoon. A urinary catheter relieved 2,000 CC's (the nurses were amazed!) and he felt much better, but he still has the numbness, so they admitted him about 2am. After consulting with an infectious disease doc (Dr. Vojda), a urologist (Dr. Short), a neurologist (Dr. Siefert) and the admitting doc (Dr. Kouvaic), he's had an MRI and tons of bloodwork that all came back clear, so we have all been very puzzled.
June 26: Another MRI this morning, this time with contrast looking for any spinal cord issues. Results show only a very small area on his lower spine that may indicate some type of infection. A quick exam by the infectious disease doc resulted in her best guess being that he has shingles! He had the two small patches of rash on his side last week that is now scabbed over, and NO pain which is classic for shingles, so I am still suspicious we are dealing with Lyme. The doctor totally disagrees that Lyme has anything to do with this. She says after 3 weeks of Doxycycline, he is cured of Lyme. She thinks the shingles virus has traveled from the nerve to cause some inflammation in the spinal cord causing the numbness. She and the neurologist order a lumbar puncture (spinal tap) to check for any infections that may be causing the numbness.
June 27: Preliminary results from spinal fluid show only two negative readings -- high protein (101) and high lymphocytes (79%), indicating some type of infection. Results of Lyme and other types of infections will not be back for a few days. They go ahead and start IVs with acyclivor (anti-viral) for the shingles, a steroid (Solu-medrol) for the swelling in the spinal, and a strong antibiotic (Rocephin) for Lyme (or any other bacterial infection). And they admit they still do not believe this is the Lyme disease, but they are still guessing what is causing this.
I do an internet search for CSF (for spinal fluid), lymphocytes and protein and come up with a website that lists Lyme as the number one possible diagnosis (all others were types of meningitis and other diseases that don't fit his symptoms). This is very frustrating.
June 28: It looks like they will let us go home after they teach him to self catheterize, and wait for the rest of the test results before we make any changes to his meds. The neurologist says that even if we can relieve the swelling in the spinal cord, it could take several weeks for the numbness to subside, but it SHOULD over time. Encouraging, but no promises.
June 29: Still all test results are negative-- including the one for shingles! The only test we don't have back yet is Lyme and the doctor said it would be in today or Saturday and she would call us. So, basically we still don't have a diagnosis for the infection yet. The Infectious Disease doctor released us home on IV Rocephin (2gm) every 12 hours for 7 more days and a pill for Acyclivor (800mg) 4 times a day. Not sure why we are still on the Acyclivor given the test for viral infection was negative, but frankly I want to cover all bases too at this point.
(The Visiting Nurse came last night and taught me how to flush the IV in his hand and push in the Rocephin every 12 hours. Very easy, thank goodness.) She will come back in 3 days to replace the IV needle and hopefully that will see us through the 7 days. We see the urologist, the neurologist and the infectious disease doc in follow-up visits then.
Bruce still can't feel to pee so he's doing in/out catheter every 4-6 hours. He's totally frustrated with it, but he's doing it and it's working. He tries to go by himself each time before he uses the catheter.
Here's the run down on what has happened to my husband, Bruce. Any advice you have would be welcome, or any resources who might be able to help us determine if the problems he is having now are related to Lyme or not would be appreciated. If you know of a Lyme Specialist or a recommendation for a doctor where I can get a second opinion, let me know. Please feel free to forward this to anyone else who might be able to lead us to some help. I am getting a copy of Bruce's medical record after the Lyme result is returned. I'd like to find someone who has treated Lyme before and can just tell us if there's anything else we can be doing. There is a tremendous amount of information on the internet and a WIDE range of recommended treatments, so it is very confusing to know what is right. Thanks! --Kathy
On Wednesday, May 30, we were at our lake cabin at Nolin and Bruce noticed a circular rash on his chest and remembered pulling a small piece of a tick (he thinks?) from the same area a couple of weeks previous, maybe mid-May. The rash looked like ringworm to me and he had no other symptoms, so we decided to wait until we went home to Louisville on Sunday to have it checked out.
On Sunday, June 4, two doctors at Prompt Care confirmed that it looks like Lyme Disease. They told us that Bruce would probably feel worse before he felt better, but if Lyme disease is treated with antibiotics such as doxycycline, symptoms usually go away within 3 weeks of treatment
On Friday, June 9, Bruce was feeling pretty lousy, but went to see his regular doctor , Dr. Neider, to let her confirm the diagnosis. She did, based on the bulls eye rash, and she confirmed that he was taking the right dose of Doxycycline -- 100 mg twice a day. She also ordered blood work to confirm the Lyme Disease. (By the way, in my internet research since then many docs say that 100mg x 2 is not strong enough to knock out the lyme bacteria.)
On June 11, Bruce noticed two small patches of blisters to the left of the tick bite site, but no pain. We looked up Lyme Symptoms and learned that you can sometimes have rashes away from the tick bite so we just thought it was another symptom and ignored it.
Bruce continued to feel bad -- weak, lethargic, achy joints, low grade fever, and then on June 12, he began to feel so nauseous he couldn't even keep water down. That night, we went to the ER to get him rehydrated and some phenergen to stop the nausea. We weren't sure if this symptom was from the Lyme or the strong antibiotics. We were released home the next morning and Bruce slept most of the day and seemed to begin improving from that point on.
On June 15, Bruce said that he felt good enough to make a planned trip to Des Moines for his Uncle's 80th birthday and it went surprisingly well. Other than a few brief bouts of nausea, Bruce seemed to be growing stronger each day, although he still tired easily. We flew back home on Sunday, June 18 and Bruce went to work on Monday.
On Friday, June 23, Bruce went back in to see Dr. Neider, our family doc, for a follow-up and she told him the Lyme tests she did on 6/4 came back negative. Maybe we did them too early? She wants to repeat the test (this one came back later negative too). Bruce tells her he is having trouble urinating. She recommends he see his urologist and makes an appt for July 5. Bruce think it's his prostate, but he's only 53 yrs old.
June 25: Bruce has not been able to pee very well for several days and this weekend he started having some numbness around his groin area and the strange sensations on the soles of his feet, so he finally let me take him into the ER on Sunday afternoon. A urinary catheter relieved 2,000 CC's (the nurses were amazed!) and he felt much better, but he still has the numbness, so they admitted him about 2am. After consulting with an infectious disease doc (Dr. Vojda), a urologist (Dr. Short), a neurologist (Dr. Siefert) and the admitting doc (Dr. Kouvaic), he's had an MRI and tons of bloodwork that all came back clear, so we have all been very puzzled.
June 26: Another MRI this morning, this time with contrast looking for any spinal cord issues. Results show only a very small area on his lower spine that may indicate some type of infection. A quick exam by the infectious disease doc resulted in her best guess being that he has shingles! He had the two small patches of rash on his side last week that is now scabbed over, and NO pain which is classic for shingles, so I am still suspicious we are dealing with Lyme. The doctor totally disagrees that Lyme has anything to do with this. She says after 3 weeks of Doxycycline, he is cured of Lyme. She thinks the shingles virus has traveled from the nerve to cause some inflammation in the spinal cord causing the numbness. She and the neurologist order a lumbar puncture (spinal tap) to check for any infections that may be causing the numbness.
June 27: Preliminary results from spinal fluid show only two negative readings -- high protein (101) and high lymphocytes (79%), indicating some type of infection. Results of Lyme and other types of infections will not be back for a few days. They go ahead and start IVs with acyclivor (anti-viral) for the shingles, a steroid (Solu-medrol) for the swelling in the spinal, and a strong antibiotic (Rocephin) for Lyme (or any other bacterial infection). And they admit they still do not believe this is the Lyme disease, but they are still guessing what is causing this.
I do an internet search for CSF (for spinal fluid), lymphocytes and protein and come up with a website that lists Lyme as the number one possible diagnosis (all others were types of meningitis and other diseases that don't fit his symptoms). This is very frustrating.
June 28: It looks like they will let us go home after they teach him to self catheterize, and wait for the rest of the test results before we make any changes to his meds. The neurologist says that even if we can relieve the swelling in the spinal cord, it could take several weeks for the numbness to subside, but it SHOULD over time. Encouraging, but no promises.
June 29: Still all test results are negative-- including the one for shingles! The only test we don't have back yet is Lyme and the doctor said it would be in today or Saturday and she would call us. So, basically we still don't have a diagnosis for the infection yet. The Infectious Disease doctor released us home on IV Rocephin (2gm) every 12 hours for 7 more days and a pill for Acyclivor (800mg) 4 times a day. Not sure why we are still on the Acyclivor given the test for viral infection was negative, but frankly I want to cover all bases too at this point.
(The Visiting Nurse came last night and taught me how to flush the IV in his hand and push in the Rocephin every 12 hours. Very easy, thank goodness.) She will come back in 3 days to replace the IV needle and hopefully that will see us through the 7 days. We see the urologist, the neurologist and the infectious disease doc in follow-up visits then.
Bruce still can't feel to pee so he's doing in/out catheter every 4-6 hours. He's totally frustrated with it, but he's doing it and it's working. He tries to go by himself each time before he uses the catheter.
Don't give up! I have a friend who had some similar symptoms for years and was always treated as if it were something psychological. Last year, she finally was correctly diagnosed with MS. If you do go through all the testing and get no satisfaction, you may really want to think about pursuing the psychological side. My mother had similar symptoms, especially the dizziness, and tried for years to find out what was wrong. She finally became convinced that it must be an allergy to mold. After spending a fortune on every gadget known for her home, she finally was convinced by a neurologist to try Elavil, an antidepressant that has been around for years and is now being prescribed for many disorders such as anxiety, migraines, and many types of pain. She did not believe that her problem could possibly be something like anxiety, because that was supposed to be something that was mind over matter! Well she was pleasantly surprised. To this day, she still takes it and has never had a problem since.
Negative Lyme tests mean nothing ........ Please see a Lyme Literate physcian. There is a very good one in Missouri. Go to Lymenet.org, click on flas discussion on the left hand side of the page and they will fill ou in on the details.
I am tired of neurologists that are greatly misinformed about lyme. They are not listening to there patients.
robi
I am tired of neurologists that are greatly misinformed about lyme. They are not listening to there patients.
robi
Well, the Lyme tests came back, and they were both negative. One the Western Blot, it had a section for the number of bands present, which was zero. Onward in trying to find out what the heck is wrong with me.
There are many cases of Lyme in California, especially in Ukiah and Santa Cruz Counties.
Since direct lab reporting was implemented in California in August of 2005, the Cal. Dept. of Health is reporting three times more cases in 2006 than 2005, and six times more cases than in 2004 (as of April, the latest date for which figures are available).
A survey in an endemic area of Northern California showed that doctors only considered a diagnosis of Lyme disease in one out of 25 patients who came in with Lyme-compatible symptoms.
Your specific symptoms are certainly consistent with the hundreds of people I've interviewed with the disease. But the best thing to do is see a physican experienced with Lyme diagnosis and treatment.
Since direct lab reporting was implemented in California in August of 2005, the Cal. Dept. of Health is reporting three times more cases in 2006 than 2005, and six times more cases than in 2004 (as of April, the latest date for which figures are available).
A survey in an endemic area of Northern California showed that doctors only considered a diagnosis of Lyme disease in one out of 25 patients who came in with Lyme-compatible symptoms.
Your specific symptoms are certainly consistent with the hundreds of people I've interviewed with the disease. But the best thing to do is see a physican experienced with Lyme diagnosis and treatment.
Since you seem to be knowledgeable on this subject, I thought I would ask you if any of the following symptoms seems like they can be caused by Lyme disease:
One episode of electric shock like feeling in head and face w/
simultaneous buzzing in ears- felt almost like a lightening bolt had hit me
Several stroke-like episodes w/ temporary paralysis (lasting only seconds)in face.-usually affects entire face. Sometimes seems related to vibrations or low resonating sounds...other times no explanation.
While sleeping, have heard an odd sound in my head/ears and have a sensation as if a gas bubble has burst in my head- immediately wakes me up & then I have to gasp for breath.
Hot flash type feelings that last for hours- my body feels almost as if it were a furnace. This seems to sometimes precede the stroke-like symptoms
Equilibrium/balance issues- floor often appears/feels as if it is moving. Had one episode where it felt like the building jumped underneath me. Also head feels like it is swimming-sort of like a "bobble head"
Tingling, burning, pins and needles mainly in head and face, but also all over body.
Hands fall asleep often.
Aching/soreness in joints & muscles- especially hands, neck & shoulders
Weakness in legs
Headaches- also head feels stuffy/tight
My GP said there hasn't been any reported cases of Lyme in CA since 1970 (which I find hard to believe) and wouldn't even consider it as a possibility...however I am seeing a neurologist who did make mention of it and did some blood work to test for it(not sure which tests yet). I read all about the inaccuracy of the standard tests and just in case the results come up negative, I went ahead an ordered some test kits from IGENEX and plan to take them with me to my follow-up appt. I also just had an MRI/MRA to rule out other possible causes.
One episode of electric shock like feeling in head and face w/
simultaneous buzzing in ears- felt almost like a lightening bolt had hit me
Several stroke-like episodes w/ temporary paralysis (lasting only seconds)in face.-usually affects entire face. Sometimes seems related to vibrations or low resonating sounds...other times no explanation.
While sleeping, have heard an odd sound in my head/ears and have a sensation as if a gas bubble has burst in my head- immediately wakes me up & then I have to gasp for breath.
Hot flash type feelings that last for hours- my body feels almost as if it were a furnace. This seems to sometimes precede the stroke-like symptoms
Equilibrium/balance issues- floor often appears/feels as if it is moving. Had one episode where it felt like the building jumped underneath me. Also head feels like it is swimming-sort of like a "bobble head"
Tingling, burning, pins and needles mainly in head and face, but also all over body.
Hands fall asleep often.
Aching/soreness in joints & muscles- especially hands, neck & shoulders
Weakness in legs
Headaches- also head feels stuffy/tight
My GP said there hasn't been any reported cases of Lyme in CA since 1970 (which I find hard to believe) and wouldn't even consider it as a possibility...however I am seeing a neurologist who did make mention of it and did some blood work to test for it(not sure which tests yet). I read all about the inaccuracy of the standard tests and just in case the results come up negative, I went ahead an ordered some test kits from IGENEX and plan to take them with me to my follow-up appt. I also just had an MRI/MRA to rule out other possible causes.
I Cannot give you a clinicl diagnosis over the internet unfortunately, as this site is purely educational
Lyme disease is relatively common in certain areas (such as New England), I believe Kentucky is not one of them. It usually presents initially with a rash, and headache from meningeal irriatation. Later on one can get peripheral nerve or nerve root problems, and very rarely, cognitive difficulties.
MS presents with dicrete episodes of a focal neurological complaint such as vision loss in one eye, weakness or clumisness on one side of the body etc, thats last between 1-3 weeks then goes away, and is associated with abnormal MRIs
Tingling in the foot is relatively non-specific without other neurological symptoms. An EMG study of the leg could ruleout a more widespread disorder. Commonly, the small nerves in the foot get damaged from ie tight shoes, and can also show changes on EMG.
Headache, difficulty concentrating, and fatigue can be a feature of a chronic headache disorder, and you may benefit from specific treatment for chronci headache from a headache specialist
Good luck
Lyme disease is relatively common in certain areas (such as New England), I believe Kentucky is not one of them. It usually presents initially with a rash, and headache from meningeal irriatation. Later on one can get peripheral nerve or nerve root problems, and very rarely, cognitive difficulties.
MS presents with dicrete episodes of a focal neurological complaint such as vision loss in one eye, weakness or clumisness on one side of the body etc, thats last between 1-3 weeks then goes away, and is associated with abnormal MRIs
Tingling in the foot is relatively non-specific without other neurological symptoms. An EMG study of the leg could ruleout a more widespread disorder. Commonly, the small nerves in the foot get damaged from ie tight shoes, and can also show changes on EMG.
Headache, difficulty concentrating, and fatigue can be a feature of a chronic headache disorder, and you may benefit from specific treatment for chronci headache from a headache specialist
Good luck
Do people with Lyme ever get a false negative test on both the ELISA and Western Blot. Well, yes, for a variety of reasons.
First of all, it's important to note that both of these tests are **indirect** tests. They don't actually detect bits of the organisms; they detect your immune system's response to the organism, which is the production of antibodies that are used to fight the bugs.
1. These tests were originally designed for the acute, early phase of the disease. Sometimes people who've had untreated Lyme for a very long time test negative because they're so sick, their immune system is no longer working well, so they aren't creating enough antibodies to detect them. But typically after they've received some antibiotics to get their germ load down, they'll test positive. That's why getting with a Lyme doctor is important. Regular docs may not know this.
2. Sometimes a person's immune system is so overloaded, that the antibodies are all tied up in "immune complexes." So the antibodies are there, but they don't show up on the tests. One researcher found that you can break up these complexes, and then the tests work, but that's not available to mere mortals.
3. So far they've found over 200 strains of the bacteria that causes Lyme. The FDA-approved tests only test for one strain (the B31 strain from Shelter Island, NY). You may have a strain that isn't detected by this very limted test. For example, I know of 2 people who've gotten Lyme from Italy. The test may not pick up the exotic strains. That's why the IGenex tests are better. They test for more strains.
4. There are different definitions of "positive." You should understand that the CDC's definition of a positive test is WAY more stringent than is needed for a clinical diagnosis. The CDC definition is "for surveillance purposes only." They want to count cases as Lyme spreads across America year by year in a highly consistent manner. IGenex's and NY state's definition are more rational; they say you only need a couple highly specific bands that are only lit up when a person has been exposed to the Lyme bacteria. Also, the CDC has removed the most specific antibody Western Blot bands (31kda and 34kda), because they were once used by the Lyme vaccine that was removed from the market. IGenex put them back in, because they're very informative. IF you have those band, you have Lyme.
First of all, it's important to note that both of these tests are **indirect** tests. They don't actually detect bits of the organisms; they detect your immune system's response to the organism, which is the production of antibodies that are used to fight the bugs.
1. These tests were originally designed for the acute, early phase of the disease. Sometimes people who've had untreated Lyme for a very long time test negative because they're so sick, their immune system is no longer working well, so they aren't creating enough antibodies to detect them. But typically after they've received some antibiotics to get their germ load down, they'll test positive. That's why getting with a Lyme doctor is important. Regular docs may not know this.
2. Sometimes a person's immune system is so overloaded, that the antibodies are all tied up in "immune complexes." So the antibodies are there, but they don't show up on the tests. One researcher found that you can break up these complexes, and then the tests work, but that's not available to mere mortals.
3. So far they've found over 200 strains of the bacteria that causes Lyme. The FDA-approved tests only test for one strain (the B31 strain from Shelter Island, NY). You may have a strain that isn't detected by this very limted test. For example, I know of 2 people who've gotten Lyme from Italy. The test may not pick up the exotic strains. That's why the IGenex tests are better. They test for more strains.
4. There are different definitions of "positive." You should understand that the CDC's definition of a positive test is WAY more stringent than is needed for a clinical diagnosis. The CDC definition is "for surveillance purposes only." They want to count cases as Lyme spreads across America year by year in a highly consistent manner. IGenex's and NY state's definition are more rational; they say you only need a couple highly specific bands that are only lit up when a person has been exposed to the Lyme bacteria. Also, the CDC has removed the most specific antibody Western Blot bands (31kda and 34kda), because they were once used by the Lyme vaccine that was removed from the market. IGenex put them back in, because they're very informative. IF you have those band, you have Lyme.
Have you taken in the past years antibiotics like avelox, cipro, levaquin, floxin, tequin or similars?
All your symptoms match exactly to a delayed toxicity to those drugs, but many other disorders cause similar symptoms.
All your symptoms match exactly to a delayed toxicity to those drugs, but many other disorders cause similar symptoms.
Have youb all had your B12 level checked? Make sure Dr. has done it and that is within normal range.
One more thing...can cubital tunnel syndrome be caused by disorders such as MS?
Thanks
TK
Thanks
TK
I know many people with Lyme with those symptoms.
You can see a comprehensive list of symptoms in peer-reviewed journal articles under "Symptoms and Characteristics (peer-reviewed literature)" on my website:
http://www.openeyepictures.com/underourskin/uos_resources.html
Which Lyme test did you take? If you just took the ELISA or IFA, you should know that that these tests miss about half of the positive cases.
Why is this? First, the FDA approved tests are based on one strain of the Lyme bacteria, even though hundreds of different strains have been documented. Second, this screening test is only 60% sensitive, when a reliable screening test should be 90% sensitive or above.
In my opinion, IGenex, which specializes in tick-borne diseases, is the only reliable Lyme lab, because they test for multiple Lyme strains, not just the B31 Shelter Island strain, and they report on the most specific Lyme markers, the 31kDa and 34kDA bands. IGenex has recently passed Cal., NY, and CDC quality testing with flying colors. You can download the IGenex testing forms from my website; give these to your MD if you want to use this lab. MDL isn't bad a bad lab either.
http://www.openeyepictures.com/underourskin/uos_resources.html
Fewer than half the people with Lyme ever see a tick bite or a rash. The longer you have Lyme, the harder it is to get rid of.
I would strongly urge you to run to a Lyme-experienced physician, which you can find by typing in your location to "Flash Discussions", then "Find a Physician" here:
http://www.lymenet.org/
And you can also enter your symptoms under the "Medical Questions" section, and you can see what other people with similar symptoms think.
KrisKraft
http://www.lymediseasefilm.com/
You can see a comprehensive list of symptoms in peer-reviewed journal articles under "Symptoms and Characteristics (peer-reviewed literature)" on my website:
http://www.openeyepictures.com/underourskin/uos_resources.html
Which Lyme test did you take? If you just took the ELISA or IFA, you should know that that these tests miss about half of the positive cases.
Why is this? First, the FDA approved tests are based on one strain of the Lyme bacteria, even though hundreds of different strains have been documented. Second, this screening test is only 60% sensitive, when a reliable screening test should be 90% sensitive or above.
In my opinion, IGenex, which specializes in tick-borne diseases, is the only reliable Lyme lab, because they test for multiple Lyme strains, not just the B31 Shelter Island strain, and they report on the most specific Lyme markers, the 31kDa and 34kDA bands. IGenex has recently passed Cal., NY, and CDC quality testing with flying colors. You can download the IGenex testing forms from my website; give these to your MD if you want to use this lab. MDL isn't bad a bad lab either.
http://www.openeyepictures.com/underourskin/uos_resources.html
Fewer than half the people with Lyme ever see a tick bite or a rash. The longer you have Lyme, the harder it is to get rid of.
I would strongly urge you to run to a Lyme-experienced physician, which you can find by typing in your location to "Flash Discussions", then "Find a Physician" here:
http://www.lymenet.org/
And you can also enter your symptoms under the "Medical Questions" section, and you can see what other people with similar symptoms think.
KrisKraft
http://www.lymediseasefilm.com/
I forgot to mention that most Lyme patients find MRIs to be worthless in diagnosis. SPECT scans are more useful because they show perfusion deficits, which are basically white matter areas of your brain not receiving good circulation because of the inflammatory processes going on when Lyme's munching way at your brain.
If you have a positive Lyme test, there's a great research trial going on with SPECT scans at Columbia, run by an excellent neuroLyme researcher, Dr. Brian Fallon.
http://www.columbia-lyme.org/flatp/resstud.html
There is very good neuroLyme symptom info on his site, too.
KrisKraft
If you have a positive Lyme test, there's a great research trial going on with SPECT scans at Columbia, run by an excellent neuroLyme researcher, Dr. Brian Fallon.
http://www.columbia-lyme.org/flatp/resstud.html
There is very good neuroLyme symptom info on his site, too.
KrisKraft
It's really good that your doc ordered both tests. The Western Blot is much more sensitive than the ELISA. But getting a proper interpretation is key, so you might want read and bring this document to your next appointment:
http://www.personalconsult.com/articles/drjonesapproach.html
Dr. Jones has treated over 7,000 Lyme patients, so he knows what he's doing. The important thing is to insist that you get ALL the individual positive and negative band readings from the Western Blot. Don't let them tell you simply Positive or Negative.
This is because all bands are not created equal. If you have one or two of the important bands, you probably have Lyme. The CDC and the IDSA will tell you that you have to have 2 bands for the IGM and 5 bands on the IGG, but that's Bull-Puckie. This is CDC Surveillance criteria, for measuring the spread of irrefutably positive cases across the country, not for diagnosis of real patients who might have corraborating symptoms. Lyme is a **clinical diagnosis**.
What's more, the Rheumatologist Steere came up with that 2 and 5 band criteria based on a German strain (Dressler standard) of Lyme bacteria, not an American strain. And to add insult to injury, it was a high passage strain (duped in the petri dish too many times) and he calculated the probability of having Lyme based on empirical data (calculations) rather than real patient data collected experimentally. The science behind this Dressler/CDC criteria was rushed IMHO, in order to help the Lyme vaccine clinical trials. And unfortunately, they still haven't fixed it. For example, there is ample data out that the 41kDA is a very important marker for Lyme in the middle and late stages, yet certain ID docs will say it's not important because it cross reactions with gingivitis. Well, if they opened a patient's mouth and looked at his/her gums, they could probably rule that out.
Ah, but I digress. I hope you get to the right diagnosis!
KrisKraft
http://www.personalconsult.com/articles/drjonesapproach.html
Dr. Jones has treated over 7,000 Lyme patients, so he knows what he's doing. The important thing is to insist that you get ALL the individual positive and negative band readings from the Western Blot. Don't let them tell you simply Positive or Negative.
This is because all bands are not created equal. If you have one or two of the important bands, you probably have Lyme. The CDC and the IDSA will tell you that you have to have 2 bands for the IGM and 5 bands on the IGG, but that's Bull-Puckie. This is CDC Surveillance criteria, for measuring the spread of irrefutably positive cases across the country, not for diagnosis of real patients who might have corraborating symptoms. Lyme is a **clinical diagnosis**.
What's more, the Rheumatologist Steere came up with that 2 and 5 band criteria based on a German strain (Dressler standard) of Lyme bacteria, not an American strain. And to add insult to injury, it was a high passage strain (duped in the petri dish too many times) and he calculated the probability of having Lyme based on empirical data (calculations) rather than real patient data collected experimentally. The science behind this Dressler/CDC criteria was rushed IMHO, in order to help the Lyme vaccine clinical trials. And unfortunately, they still haven't fixed it. For example, there is ample data out that the 41kDA is a very important marker for Lyme in the middle and late stages, yet certain ID docs will say it's not important because it cross reactions with gingivitis. Well, if they opened a patient's mouth and looked at his/her gums, they could probably rule that out.
Ah, but I digress. I hope you get to the right diagnosis!
KrisKraft
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