General Discussion
Lyme Disease
I can't believe it fooled me twice 11 years apart! The last two years have been tough. Dizziness, heart racing, hurt absolutely everywhere, nauseasness, brain fog, blurry vision, shooting pains, swollen lymph nodes, sore to the touch, and an host of other neurological issues. It has been especially bad the past 2 months.
Similar to the first time, I relied on western medicine and the Elisha and western blot Lyme tests, and was told I don't have Lyme.
I've mentioned this before, if the Elisha Lyme test shows positive, you absolutely have Lyme. However, the Elisha has poor sensitivity in early Lyme disease (35-50%), and inadequate sensitivity in later stages of Lyme disease, and misses the mark 75% of the time. People who have Lyme disease are frequently diagnosed with something else for the reasons noted above - Western medicine's Elisha Lyme test is just not accurate.
I went to a Functional Doctor / Lyme Literate Doctor (LLD) who suspected Lyme and sent my blood off to IGenex (most accurate Lyme testing lab in the country). Turns out I not only have Lyme (Bartonellosis), but also have two other tick borne infections: Anaplasmosis, and Bartonella Henselae.
When I read the symptoms, it was like somebody narrating a chapter in my life.
I have follow up tomorrow afternoon for treatment protocol.
Interestingly, typical health insurance will pay for the Elisha test, but not an IGenex Lyme panel (that will find the problem).
It is absolutely crazy to me. They'd rather have you bounce around from cardiologist, to rheumatologist, to internal medicine, to orthopedics, to neurologist, and never get a correct diagnosis. Just keep spending money, and keep getting worse with no answers.
The only way to find out if you have Lyme (or 19 other tick borne diseases) is to pay out of pocket, and send it to a laboratory specializing in tick borne illness.
Did you know that in addition Batonella, your average deer kick (or black leg tick) can carry 19 other piroplasms that are equally as detrimental, and if left undiagnosed can cause death? Western medicine doesn't test for any of them other than Bartonella.
People get worse and worse and never get an answer...
Jimmer-
The absolute minimum is 21 days, with 4-6 weeks being common. Anything less than that, and you run the risk of not 100% wiping it out, and it coming back stronger.
The CD57 test is not accepted by the CDC, (however I should mention that the CDC also doesn’t believe chronic Lyme disease exists), so take that with a grain of salt.
In a nutshell, the CD57 is more useful for benchmarking treatment progress than diagnosis itself. Most folks with an active Lyme infection have a CD57 score of <60. Whereas a healthy person will have a CD57 score of >300. They typically treat you with Doxy until your CD57 score is 200 or above. I was on Doxy for almost 2 years before I was able to get back to a fairly normal / active life. (I had undiagnosed Lyme for years) Also, exceedingly few labs are proficient at administering a CD57 test.
As for treatment protocol, Here is a good link
It’s important to note that very few doctors are proficient with Lyme, it’s not that your doctor doesn’t want to help you, it’s just a specialty like oncology or cardiology, for Lyme doctors - it’s all they do…
I was on it 21 days, I was undiagnosed for around 9 or 10 months I believe. I had all the symptoms but the rash , never put 2 and 2 together. I could've slept 24 hours a day. I was feeling better after 3 days as far as being tired, my joints took longer.
Not sure if the test is covered.
The county did call me to verify a positive test at the time.
For the past month or so I’ve been noticing that I tire more easily than usual, especially when I am working hard, physically, and then not feeling rested in the mornings. About three weeks ago I started having some pretty significant neck pain and headaches. Then late last week I started getting some round/oval rash marks on my chest. Three days later the rash was all over my upper torso.
I went to the doc yesterday and they started me on 10-day run of doxy. Just got a call that the ELISA came back positive. Been down this road a few times now.
Any thoughts on whether a person should be requesting a longer regimen of the doxy, or if it’s needed?
Also, is the CD-57 typically covered by insurance?
Hopefully everybody on this thread is recovered or on their way to it.
Thanks.
I recall that as well sh!
I had 1/2 dozen Elisha Lyme tests from my primary care, rhuem doc, neurologist, etc, all negative… They suspected I had lupus, MS, Fibro, even a brain tumor, however everything kept coming back negative, while I got sicker and sicker.
Interestingly, there is a sweet spot for the Elisha Lyme test. For many, they will not test positive until 4 to 6 weeks after exposure. For others who are unfortunate enough to not have a diagnosis for years, and years, they will typically test for antibodies, as the bacteria by that point has burrowed itself deep into your muscles and nerves.
New estimates show that the Elisha Lyme test may miss up to 50% of diagnosis's, and so many suffer without understanding why or what is wrong with them.
The only fool proof way is to get a Lyme panel by Igenex - they are the best in the biz!
Quester,
That has always been the case, around 30-40% of folks never get a bull’s-eye rash…
Skihog-
A CD57 test is more useful for benchmarking progress of treatment than an initial diagnosis. A normal person typically has a score of 500 or above, someone with an active Lyme infection is typically going to be under 200. LLD’s typically treat their patients with Doxy or a similar antibiotic until the CD57 score rises above 200, then they let your body do the rest. I was on antibiotics for darn near two years, as I was undiagnosed for years…
Never had the bullseye, if it's on your head you'd never see it. I had every symptom just never put it together. The neck ache was a son of a buck and the screaming head aches. I stated earlier I have reumitoid arthritis and it mimics it . You have to insist on a test.
Had one buried in my stomach a year later. They just gave me ten days worth of doxy , no test.