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
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.
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