AboutCarol Expertise I can answer questions about Lyme disease and recommend websites where one can find good, up-to-date information. I can also tell you how to find a Lyme specialist which is critical if you or anyone you know suspects that he or she may have Lyme disease. I can, also, provide you with a symptoms list.
Experience I suffered for 2 years with a bad case of neurological Lyme disease & finished a 37-month course of antibiotics in March, 2007. I went undiagnosed for 2 years, & saw a total of 14 various doctors and 'ologists. I attended a two-day Lyme conference in the spring of 2005 and I keep myself current on the topic of Lyme disease.
I quickly learned that YOU CAN HAVE A FLAMING CASE OF LYME DISEASE AND STILL HAVE NEGATIVE TEST RESULTS! It is essential for anyone who suspects that he/she may have Lyme disease to be tested for the co-infections that can occur with it. Only a Lyme specialist can perform these tests and make these diagnoses.
I'm a 51 yo male who just had a Lyme's titer done. The results are not back yet.
PMH: Back in 1975 when I was a strong/healthy 20 yo I was working on the railroad in Northeastern Wisconsin. The area was tick infested, mostly woodticks, but there may have been deerticks also. I got very sick and spent almost the entire Summer at my parents laying in bed; severe headaches, fever, swollen lymph nodes, photophobia, extreme sensitivity to noises, dizziness, muscle ache, and fatigue, I was so weak I couldn't raise my head off the pillow. The Doctors couldn't figure out what was wrong with me. They didn't know much about Lyme's disease back then. I never was put on any antibiotics. By Fall I eventually recovered on my own and returned to school.
The following Spring I had somewhat of a relapse with headaches, etc, but they weren't so severe and I recovered much sooner.
Since then, I have always had some dizziness and offbalanceness (vertigo).
About 2 years ago I developed iritis and pseudoexfoliative glaucoma, along with frequent vision changes. I have no family history for any of this. The ophthalmologists have no explanation for such severe glaucoma at my age which is not being controlled by meds (my IOP is in the mid-30s) and I'll probably need eye surgery. My off balanceness is currently very bad.
My question is, if I did indeed have Lyme's back then and have chronic illness, is there even a chance of the Lyme's titer test detecting this after 30 years, or are the false negatives extremely high with such chronic lyme's? I’m assuming I haven’t recently been re-infected even tho I still live in an area with Lyme’s.
At this point, if the Lyme's titer is negative, my doctor doesn't plan on pursuing it with a Western Blot or other tests. They’ll pursue treating the eye problem symptoms with finding the underlying cause(s).
Thank you
Gary
Answer Gary...
There's one other thing I wanted to recommend. My Lyme doctor put me on a supplement that is wonderful for the eyes and it has helped a lot of people with eye issues. It's called Astaxanthin and the brand is Astavita. He said that brand is very important. He has studied the reasearch. Also, he has a Master's Degree in Public Health so he does know his supplements, plus, he's writing a book on Lyme treatment which should be out this summer. I order the Astaxanthin from www.vitacost.com It certainly couldn't hurt.
Carol
HI, Gary....
I can identify with the eye problems. That is where my symptoms first appeared and the light-sensitivity was so severe I begged my doctor for prescription pain medication. And....oh, the headaches. I've had those, too.
It sounds like your immune system did a pretty good job fighting the Lyme off for all these years but it got a stronghold in your head and eyes. Frequently, people remain bedfast the entire time without a diagnosis or a misdiagnosis of stress, depression, etc.
Since you have had it for so long, chances are any Lyme test you take could come back negative. The tests for Lyme are very unreliable, so the same could hold true for anyone infected with Lyme no matter how recent or long ago.
If I were you, here's what I would do:
Most importantly, I would find a Lyme specialist and for several reasons:
A. Your Lyme test could come back negative and, therefore, you will receive NO treatment from your doctor. Lyme specialists will treat you regardless of the test results.
B. If you do test positive, current medical guidelines only call for 2-4 weeks of doxycycline and this is NOT enough, especially since you've been infected for so long. Lyme specialists typically use two high-powered antibiotics often switching combinations to keep the Lyme on the run so to speak. Since you have been infected for so long, you will need long-term antibiotics and you will not get this from your doctor.
C. It is critical that you be tested for the co-infections that can occur with Lyme. Doctors don't know about these at all. They can have many of the symptoms as Lyme and they don't all respond to the same antitiobics.
To find a Lyme specialist, go to www.LymeNet.org and register. Click on Flash Discussion and then on Seeking A Doctor. Post there with your city and state and someone will email you privately. There is a policy not to post doctors' names on the site due to privacy issues. You will see LLMD a lot on the site and that stands for Lyme-literate MD. They are few and far between so be prepared to travel if you find one. I drive 2 1/2 hours to see my doctor and don’t know where I would be without him.
I, also, had to see a neuro-ophthalmologist in PA who specializes in eyes with Lyme issues. I was never so impressed with a doctor in my life. The man did everything but walk on water. He was phenomenal. He was well worth the three hour drive. If you don't mind traveling, perhaps you should consider an appointment with him.
Just for FYI, here are reasons for false-negative Lyme tests:
Nine Reasons for False Negative Lyme Disease Blood Test Results
From the Lyme Disease Foundation brochure, Frequently Asked Questions About Lyme Disease
1. Antibodies against Borrelia burgdorferi (Bb) are present, but the laboratory is unable to detect them.
2. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is currently on, or has recently taken, antibiotics. The antibacterial effect of antibiotics can reduce the body's production of antibodies.
3. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is currently on or has previously taken anti-inflammatory steroidal drugs These can suppress a person's immune system, thus reducing or preventing an antibody response.
4. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient's antibodies may be bound with the bacteria with not enough free antibodies available for testing. For this reason, some of the worst cases of Lyme disease test negative -- too much bacteria for the immune system to handle.
5. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient could be immunosuppressed for a number of other reasons, and the immune system is not reacting to the bacteria.
6. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the bacteria has changed its makeup (antigenic shift) limiting recognition by the patient's immune system.
7. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient's immune response has not been stimulated to produce antibodies, i.e., the blood test is taken too soon after the tick-bite (8-6 weeks). Please do not interpret this statement as implying that you should wait for a positive test to begin treatment.
8. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the laboratory has raised its cutoff too high.
9. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is reacting to the Lyme bacteria, but is not producing the "right" bands to be considered positive.
Well, Gary, those are my thoughts. I certainly hope you get some help. If you want the name of that eye dr., send me an email. I don't post names and numbers on public forums out of respect for their privacy.
Again, good luck. I've been there, so I know what you're going through.
