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Is it MS, or possibly Lyme? I need some advice!
I am a 30 year old female from Buffalo New York. Six months ago the right side of my face started going numb,accompanied with severe headaches (my right eye will occassionally sink in after an episode and my eyelid will droop for several days.) During this time my legs started feeling very heavy and weak. MRI of the brain demonstrated abnormalities in the subcortical white matter. MRI of the of the spinal cord showed no abnormalities,(although it did show a significant amount of arthritis in my neck and back.) Upon my neurologic examination I was found to have hyperactive reflexes in the lower extremities more than the upper, clonus at the ankles, a positive Romberg, and the Babinski sign is present. Two months ago I developed L'Hermitte's sign. Around that time I stared having alot of trouble with my right arm. The arm went numb, since then the muscle has atrophied, and now it is becoming painful(burning and itching.) The joints in my fingers, toes, and right shoulder have been swelling now and again, and I also started having muscle spasms in my calves, and around my ribs.
I had a positive Lyme titer, and a positive Western Blot (three reactive IgM bands), but my neuro says that since there were not any IgG bands, that I do not have Lyme. My CPR is high (1.2), vitamin D deficient (12) vitamin B-12 is low (273). Homocysteine and methalmalonic acid levels were normal. Lumbar puncture was normal. CT of the chest was normal, but revealed that my spleen was enlarged. I had three miscarriages in the past, so I was also checked for Antiphospholipid Syndrome-negative. Celiac's Disease(I also have diarrhea),copper deficiencies,lupus, sjorgen's,and rheumatoid arthritis have also come up negative. My Neuro admits he does not know what is wrong with me, nor does my GP. I feel as though they are giving up on me, and I don't know what to do, I am not getting any better here. Starting to get discouraged. Any advice would be greatly appreciated.
I had a positive Lyme titer, and a positive Western Blot (three reactive IgM bands), but my neuro says that since there were not any IgG bands, that I do not have Lyme. My CPR is high (1.2), vitamin D deficient (12) vitamin B-12 is low (273). Homocysteine and methalmalonic acid levels were normal. Lumbar puncture was normal. CT of the chest was normal, but revealed that my spleen was enlarged. I had three miscarriages in the past, so I was also checked for Antiphospholipid Syndrome-negative. Celiac's Disease(I also have diarrhea),copper deficiencies,lupus, sjorgen's,and rheumatoid arthritis have also come up negative. My Neuro admits he does not know what is wrong with me, nor does my GP. I feel as though they are giving up on me, and I don't know what to do, I am not getting any better here. Starting to get discouraged. Any advice would be greatly appreciated.
I had neurological Lyme Disease, late disseminated, sever,e stage four.
I lived in NY by Ithaca in 93-95; I got very ill in 2002 (living in AZ), much later than I was likely to have contracted lyme. It hides, and can evade the immune system for years. Accurate diagnosis, lyme, and thus appropriate treatment , was not made for 3.5 years.
It was in my central nervous system. My face and neck pain, and overwhelming fatigue were my starters. There is no certain path or course that symptoms take for the disease, making it hard to diagnosis. I had difficulty sleeping, walking, talking, thinking, extreme depression and sensory sensitivities by one year. Yes, I stuttered and speech became very labored. The dr.s who should know better wrote me off (probably they could not diagnosis, even at a renown tertiary clinic) and told me it was psychiatric problem. My husband believed they were right. Did you know only 1 in 4 marriages survive when one spouse has a chronic illness?
Have done much reading, lyme conferences DVDs, and searching for dr.s who might know diagnosis. My lyme test was negative, so we dismissed that idea, for too long. Many years later have learned the tests are so inaccurate, may stay negative until adequate antibiotic treatment, and for some stay negative forever.
It is a diagnosis that should be made based on clinically symptoms. Yes, all of my other testing was negative, including lyme tests. My dr. specializes in chronic fatigue, and so attends conferences on such, which now include lyme. Lyme is considered the next great imitator, as syphilis was the first. Because lyme can be so devastating, the earlier the antibiotic treatment starts the better.
Please google lyme sites if you haven't already. I don't remember exact addresses, but lymenet, lyme disease association, international lyme disease and associated diseases society (ilads.org) are good. Some have dr. referral for near your location. My personal opinion learned the hardest way, if cause of symptoms cannot be identified, give antibiotics for a month or more and see what happens. If the person gets to feeling more ill (herkheimer reaction) you are probably on the right track. This is because the bacteria release neurotoxins as they die off, so you will feel worse. The dose may have to be lowered if die off symptoms are too severe. Also, you might have to try a variety of antibiotics.
Bottom line, you may need to go to a specialist (an open minded one at that) to get an appropriate diagnosis. The first person to suspect lyme (at end of first year of being ill, now in AK) was a family nurse practitioner who studied in the East. My Mother even knew best and suspected lyme at this time. We dismissed it since the tests were negative. You can’t imagine the “ what ifs” that have gone through my mind.
At 4.5 years I traveled to NYC to Columbia Univ. Lyme Dis. Research Center, which confirmed the diagnosis. I live in Alaska (no ticks here) and another friend from here had similar experience; he finally got accurate diagnosis at John Hopkins Univ.
It is devastating illness if not treated adequately; symptoms can evolve over months. Dr.s may be reluctant to treat with long term antibiotics (which is why you might need to find one open minded). My husband was against antibiotics for more than a month, but he also agreed with dr.s who said it was psychiatric. When he saw how rapidly I regressed when off antibiotics for a week after being on several months he finally realized I did have lyme disease in my brain. Brain SPECT scan showed global hypoperfusion, which is unlike depression.
I was on oral antibiotics for a year with some improvement, but then 5 months of IV infusion Rociphen. I have been progressively improving over past 1.5 years since this stopped. I do want you to know I am much improved :)), but I really suffered needlessly. I was so ill and unable to enjoy life, and gave much thought as to whom I was living for. Not taking my life to end the suffering was a long struggle, that subsided only after I had been on antibiotics for many months. Yes, I was on multiple antidepressants and had counseling. One of the biggest help to me was having my husband go to counseling at the end of 3 years. This greatly reduced the tension. Talking wsa stressful as it was always about my health, and why didn’t I do this or that to get better. We resorted to hearing each other’s voices in non threatening way was to read to each other (he did most to it).
This is a very grave disease - don't mess around waiting. My son and family now live in Philly, and because of my experience they do not take possible exposure lightly.
Please read websites.
Response from PaintingCate regarding tests is very good. Look for her comment down the right hand column of responders.
I lived in NY by Ithaca in 93-95; I got very ill in 2002 (living in AZ), much later than I was likely to have contracted lyme. It hides, and can evade the immune system for years. Accurate diagnosis, lyme, and thus appropriate treatment , was not made for 3.5 years.
It was in my central nervous system. My face and neck pain, and overwhelming fatigue were my starters. There is no certain path or course that symptoms take for the disease, making it hard to diagnosis. I had difficulty sleeping, walking, talking, thinking, extreme depression and sensory sensitivities by one year. Yes, I stuttered and speech became very labored. The dr.s who should know better wrote me off (probably they could not diagnosis, even at a renown tertiary clinic) and told me it was psychiatric problem. My husband believed they were right. Did you know only 1 in 4 marriages survive when one spouse has a chronic illness?
Have done much reading, lyme conferences DVDs, and searching for dr.s who might know diagnosis. My lyme test was negative, so we dismissed that idea, for too long. Many years later have learned the tests are so inaccurate, may stay negative until adequate antibiotic treatment, and for some stay negative forever.
It is a diagnosis that should be made based on clinically symptoms. Yes, all of my other testing was negative, including lyme tests. My dr. specializes in chronic fatigue, and so attends conferences on such, which now include lyme. Lyme is considered the next great imitator, as syphilis was the first. Because lyme can be so devastating, the earlier the antibiotic treatment starts the better.
Please google lyme sites if you haven't already. I don't remember exact addresses, but lymenet, lyme disease association, international lyme disease and associated diseases society (ilads.org) are good. Some have dr. referral for near your location. My personal opinion learned the hardest way, if cause of symptoms cannot be identified, give antibiotics for a month or more and see what happens. If the person gets to feeling more ill (herkheimer reaction) you are probably on the right track. This is because the bacteria release neurotoxins as they die off, so you will feel worse. The dose may have to be lowered if die off symptoms are too severe. Also, you might have to try a variety of antibiotics.
Bottom line, you may need to go to a specialist (an open minded one at that) to get an appropriate diagnosis. The first person to suspect lyme (at end of first year of being ill, now in AK) was a family nurse practitioner who studied in the East. My Mother even knew best and suspected lyme at this time. We dismissed it since the tests were negative. You can’t imagine the “ what ifs” that have gone through my mind.
At 4.5 years I traveled to NYC to Columbia Univ. Lyme Dis. Research Center, which confirmed the diagnosis. I live in Alaska (no ticks here) and another friend from here had similar experience; he finally got accurate diagnosis at John Hopkins Univ.
It is devastating illness if not treated adequately; symptoms can evolve over months. Dr.s may be reluctant to treat with long term antibiotics (which is why you might need to find one open minded). My husband was against antibiotics for more than a month, but he also agreed with dr.s who said it was psychiatric. When he saw how rapidly I regressed when off antibiotics for a week after being on several months he finally realized I did have lyme disease in my brain. Brain SPECT scan showed global hypoperfusion, which is unlike depression.
I was on oral antibiotics for a year with some improvement, but then 5 months of IV infusion Rociphen. I have been progressively improving over past 1.5 years since this stopped. I do want you to know I am much improved :)), but I really suffered needlessly. I was so ill and unable to enjoy life, and gave much thought as to whom I was living for. Not taking my life to end the suffering was a long struggle, that subsided only after I had been on antibiotics for many months. Yes, I was on multiple antidepressants and had counseling. One of the biggest help to me was having my husband go to counseling at the end of 3 years. This greatly reduced the tension. Talking wsa stressful as it was always about my health, and why didn’t I do this or that to get better. We resorted to hearing each other’s voices in non threatening way was to read to each other (he did most to it).
This is a very grave disease - don't mess around waiting. My son and family now live in Philly, and because of my experience they do not take possible exposure lightly.
Please read websites.
Response from PaintingCate regarding tests is very good. Look for her comment down the right hand column of responders.
I have a very similar experience! I saw 4 neurologists and a rheumatologist and none of them could help me. I started with a major increase in headaches and the left side of my face going numb. I ended up with numbness all over my left side and started having spasticity also. I have left sided hyper-reflexes, and even had 1 O-band in my CSF. I had doctors telling me that I had MS even when my western blot was CDC positive for lyme. I have started on antibiotics and I am AMAZED at how much I have improved. Most doctors are in complete denial about lyme and they will never help you. I still have some vague numbness, but the headaches & spasticity have left and never returned. I feel like I have a second chance at life now. It is really frightening how much lyme can mimic MS (& other diseases). Don't waste anymore time, find a LLMD.
I would seek an opinion from a a lyme-literate physician. You can find one by posting at lymenet dot org. If you post what you posted here you should get plenty of responses from people who are very familiar with lyme. My understanding is that IGG=past infection, IGM= current or active infection. Also from what I have read the IGG or IGM or both can be positive or indicative of lyme. I saw 5 neuro's and not one could diagnose what was wrong. All my tests were normal but I had the hyperreflexia and many of the symptoms you mentioned.
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