Aa
How often are false negatives?
Really need help. End of march lost total vision out of right eye, and had very little out of left. MRI revealed optic neuritis. Treated with high dose of steroids and vision has slowly come back. Have been running a mild fever for months. Burning, twitching, pinching, numbness, tingling, just roams through my body - right arm then left cheek, then left pinky, then thigh, then lip and ear, just migrates. Now diareah and researching blood in urine. No leisions on brain. Had bad rash on shin 3 years ago. When I learned of lyme's I was so excited, and thought for certain I'd figured out what was causing the circus in my body, but test came back negative. Now at a loss, have seen neurologist, rhumatologist, now feel at dead end. Any suggestions would help.
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.
Read the post by jodibs on page 3 and you'll get an idea how unreliable the testing is.
Have an Answer?
You are reading content posted in the Lyme Disease Community
Fearing autism, many parents aren't vaccinating their kids. Can doctors reverse this dangerous trend?
Can HIV be transmitted through this sexual activity? Dr. Jose Gonzalez-Garcia answers this commonly-asked question.
A breakthrough study discovers how to reduce risk of HIV transmission by 95 percent.
Dr. Jose Gonzalez-Garcia provides insight to the most commonly asked question about the transfer of HIV between partners.
Before your drop a dime at the pharmacy, find out if these popular cold and flu home remedies are a wonder or a waste
Fend off colds and the flu with these disease-fighting foods
