In the movie "Under our Skin" (about Lyme), one of the research or treating physicians mentioned that every MS patient they tested was also positive for Lyme. 100%!! That seemed significant to me and I wondered why they didn't give a little more detail. I wonder if this explains that.
It would be interesting to see what they have to say about it over on the Lyme forum.
I would guess that the first blood test done was a Lyme Titer. This test is nonspecific. The gold standard is the Western Blot test, which still can produce false positives or negatives. More often false positives too soon after exposure. If a false positive result comes back, but Lyme Disease is suspected, a second test is recommend 2 to 4 weeks later.
The recommended treatment used to be to wait for a positive dx before starting antibiotics. Now if one is bitten by a deer tick or shows the rash, the protocol is to start a 1 week course of antibiotics right away.
I live in East LYME and my son has had Lyme Disease 4 times, so I have ended up doing extensive research, especially when he had one case diagnosed late and ended up on IV antibiotics after 2 rounds of oral antibiotics.
Thanks for your input!
Twopack - that must be why people with MS test positive for Lyme - because of the lab's statement about autoimmune antibodies affecting B. burgdorferi. I guess rheumatoid arthritis and lupus people's initial nonspecific Lyme Titer results would also be positive.
Audrey_M thanks for letting me know there actually is a place called "Lyme" - I didn't know how the disease got that name - so often they name them after researchers or doctors. Years ago I was told by an infectious disease specialist that I couldn't have Lyme because it is not a "chronic" disease. Since then others have told me it can be. That guy did nothing for me, just sat in his chair, told me Lyme could not be chronic, and charged $400!! Outrageous!!
My exposure, or at least my symptoms, started 5+ years ago - so chances are the negative results I had for the Western Blots were valid.
Still, I have sometimes felt like I had more energy while on antibiotics . . . Hmmmmm
Your son and you have gone through so much with Lyme!! Have you considered moving?
I just reread my post and I meant to say a false negative if tested too soon. Razzin' frazzin' firizzin' frazzin' brain- I make mistakes like this all the time now and get so frustrated with them.
And yes, there truly is a place called Lyme, CT, which is where the disease was first identified. East of Lyme is Old Lyme and then further east is East Lyme.
With the Western Blot Test and exposure to Lyme Disease, the IgM bands typically stay reactive up to 6 months after treatment/exposure. Doctors specializing in Lyme disease will typically view previously treated patients who test positive on both IgM and IgG bands after 6 months as a new exposure. The IgG bands can stay reactive for years after exposure and there is no consensus as to how long they do stay reactive.
As for moving, it's not so simple. Lyme Disease is prevalent throughout Connecticut and that is the base of my support system.
The good thing is that I finally got my hardheaded son (now 20) to start using tick repellant this year. He carries it in his car with him so that he can use it when he goes out climbing in the woods. Deer tick are as small as a pencil dot and very hard to see, so I'm glad he finally has taken my advice (badgering) over this one!
Thanks for more input. Yeah, guess it's best to stay where your support system is. Glad your son is now wearing tick repellant (wasn't aware of such a thing) and I hope it works!!
I never knew that deer ticks could be a small as a pencil dot. It would be very hard to know you had been bitten by one (unless the rash showed up). However are you able to locate such a small tick and get rid of it - especially if it is in your hair??? Do the antibiotics kill such a tick or at least make it jump off?
My only known exposure to a tick was when I was trying to help a toad in South Florida by removing a fat tick that was feasting on him. It was a bizarre sight. I had never before seen a tick attach to a toad.
Here in Utah, deer often come down out of the mountains to graze on grass at a local cemetery. I think they are called "mule deer" (they have ears as long as a rabbit). I guess anyone visiting a grave in that cemetery could be in jeopardy of having a tick jump on them. The first time I saw the deer in that cemetery I thought they were statues - they stood immobile. It was a beautiful sight!
I have often wanted to go owl-hunting with our local Audubon group at night, but the thought of ticks (as well as my fatigue) has stopped me from doing so.
Hoping you and your family remain Lyme-free!
I've posted a picture from the web about the size of deer ticks.
Lyme Disease is usually transmitted when the tick is in the nymph stage (the ticks in the middle of the picture). Just look at how small they are at that stage! Very hard to see, especially in an area covered with hair.
As for the "classic" bull's eye rash, only 1 in 3 will show this symptom. My son never did in all 4 times, however with the first exposure he did have a measles like rash on his torso along with a fever. My dad wondered if it might be Lyme and I said that the rash did not look right. 10 months later his knees ballooned up with synovial fluid and hobbled him. I'll never dismiss my dad again!
The northeastern/mid-Atlantic areas of the US are particularly hard hit by Lyme disease, though no state is Lyme-free. Lyme, CT is a pretty spot--too bad that it has to be associated with this disease.
Deer ticks are indeed tiny, which is a big reason their bites can be missed. Dogs here in MD are routinely vaccinated against Lyme. We are frequently warned to use a product containing DEET and to tuck pants into socks when hiking. I wish there were a safe vaccine for humans. I know one young girl who has chronic Lyme with terrible neurological symptoms, including intermittent blindness and deafness. She is on long-term IV antibiotics which don't seem to be helping. Meanwhile a neighbor of mine was diagnosed rather recently and has been given the standard 3-week course of meds. She continues to get rashes and is very fatigued. The fact that this whole diagnosis is extremely controversial works against good treatment for many patients, adding to their very understandable frustration.
I have not seen the documentary about Lyme, but I find any statement that 100% of MS patients will test positive for that disease to be blatantly false. If it were true, that would be a big MS diagnostic technique. Lyme testing is a rule-out for MS, since they can be mimics of one another. We do know that the Lyme lab tests produce many false positives and false negatives, but this is another issue entirely. If MS is ruled out, it is always a good idea to test for Lyme more than once, using a lab that does the Western Blot. Mary, I know this is not your claim and you are simply reporting what you saw. Yet if they were wrong about this one important factor, that calls into question the whole production. Too bad, because Lyme can use all the public info it can get.
MedHelp has a very active Lyme forum with good information. Limbolanders may want to take a look.
My new MD referred me to a rheumatologist because of my recent false-positive nonspecific Lyme titer result (cancelled out by subsequently negative Western Blots). That's because the lab and he are aware of the interaction that autoimmune diseases can have that might cause the initial Lyme titer test to be positive. I don't think I have rheumatoid arthritis, but we'll see. My mom had it really bad, had twisted fingers, but my symptoms are different from hers (except for the falling, some balance issues, and weakness). She didn't have muscle cramping or heat sensitivity and she had joint pain which I don't have.
Will keep you posted.