anyone have experience with Lyme or tick-borne infections?

[nashville_brook]

I'll keep this short to stay focused, but I came down with three serious conditions all at once in 2003: DVTs, autoimmune hepatitis, and infections in my lumbar discs and bones (discitis/osteomyelitis). Spent 4 months in the hospital, went septic a few times. It was a mess.

The symptoms are back and I've basically taken on a second job trying to figure it out before I get sick again. No one ever figured it out before -- just, "you got sick and we don't know why." It took a few years of not getting much better to be dx'd with fibro/cfids. Not the easiest dx, but at least it's something.

Here's the rub: a couple of months before i fell ill in 2003 i had a classic, giant target-shaped rash on my back (right over L1-L2 where the infection hit). Recently I did a course of Levoquin for a sinus infection, and like magic I had the energy and range of movement that I had before getting sick (was like being 25 again, energy-wise). This is a classic chronic Lyme response. Also, another classic antibiotic response is to respond horribly to antibiotics, which we ran into trying to heal the initial infection.

So, i'm just wondering, has anyone here dealt with Lyme and Lyme testing? I finally have a team of docs who I think are interested in solving this mystery. I want to help them help me, if I can.

[Warpy]

1. Ask for a Lyme titer, it can't hurt

The jury is out on whether chronic Lyme exists but is currently in favor of reinfection rather than having the nasty little spirochetes dodge the first round of antibiotics.

It takes three weeks of antibiotics to kill them. The good news is that they're vulnerable to old antibiotics like penicillin and erythromycin.

Fibro/cfids is a lousy diagnosis. However, they're getting on the right track for effective drugs as well as non drug treatment.

I had Lyme ages ago. I was "lucky" enough to get the bull's eye rash and a temp north of 103, so the diagnosis was easy and the treatment swift. I have no aftereffects that I know of, but with RA and fibro predating it, how could I tell?

[nashville_brook]

5. there was so much going on in my life when i had the rash!

my marriage was breaking up, my parents had died and I was trying to clear the estate, i lost my job -- i remember being flummoxed by the weird rash but couldn't pay much attention to it.

and YES, fibro/CFS is a crappy dx! it's a description of symptoms rather than a root cause.

so glad you were able to kick lyme!!

[Warpy]

6. Even longstanding, untreated Lyme can be cured

but the treatment might also have to be longstanding if it has invaded your heart.

Good luck no matter which awful disease it might be.

[nashville_brook]

8. thanks! i didn't know it could go cardiovascular -- i have much reading to do

i knew it had a neurological component which is frightening enough. back to the books.

[Warpy]

9. No, you need to hustle your butt back to the doctor

and have him check that titer. It's not 100%, but it will give him a clue about differential diagnosis.

[nashville_brook]

12. next appts on the 8th and 21st of july

neuro and rheumy. That rheumy appt i set weeks ago -- it was the first date she had open.

it's the neuro who is doing the sleuthing. I'd originally been sent to him just to get an EMD (the nerve conduction test) but when he looked at my history he said he'd rather not stick a bunch of needles in me without knowing what's causing my fevers. he asked if i'd come on as a patient to try to get to the bottom of things.

totally impressed with his bloodwork order -- he asked for 33 different tests including a few that are valuable to Lyme (like MTHFR), but i had not had the abx reaction before he ordered that work. now i have a new data point to report, and i've developed a new symptom, red eyes. just insanely red. at first i thought pinkeye, but there's no crusting and it happens randomly -- sometimes when i wake up, sometimes in the middle of the day or at night. i've been asked more than once if i smoked weed. the first time i laughed and said they were full of shit, then i looked in the mirror. holy cow, it's like i've been swimming in a high-chlorine pool for hours with my eyes wide open.

i found an LLMD to add to the team, and that's who I'll most likely be able to get to do the Igenex titer test.

[Wilms]

2. Very controversial subject.

Both the diagnosing and treatment protocols are a hot potato. I believe that the test done through Igenex lab in CA is one of the good ones. There are others where the interpretation using CDC specifications falls short.

Glad your docs are interested in figuring it out.

Best of luck!

[nashville_brook]

4. i had to joke with my doc about it today

Lyme is the only thing more problematic for a doc than fibro/CFS. I've been thru hell and back just getting those syndromes under control. Now it looks like i'm graduating to the master's class in being a pain to my docs.

Good info in Igenex -- I will put that in my notes. No one here really knows what the deal is with testing.

thankyou!

[kickysnana]

3. It takes 6 weeks of antibiotics to cure an original infection, same as with Syphillis

It sometimes takes months of combinations of antibiotics to clear your body of the disease if you have had it for more than a few days. Lyme goes into cysts to evade what the CDC recommends or treatment and is a deep tissue disease.

By the time you test positive for Lyme it has already gone past the 3 week cure. Some people never test positive since, except for Igenex, the Lyme tests are made to detect a laboratory strain that is not found anywhere in the wild. If all your antibodies are bonding to the spirochetes you also will not test positive.

By CDC/FDA definition all Lyme titers need to do is pick up 39% of previously proven disease. They were made for surveillance, NOT diagnosis. Lyme Disease is a clinical diagnosis. The absolute worst test is the one that Mayo sells, the best is IGENX but it requires special handling and so costs more and insurance of course wants cheap. Many doctors do not know this.

Most people do better with supplemental magnesium and B12. Niacin if your cholesterol starts going up.

A lot of people get some symptom relieve with with daily saunas or hot tubs but it is not a cure.

Because of the controversy, frustratingly you will find doctors who feel it is their duty to "prove" you don't have Lyme and people "who think they have Lyme" are treated the same way the Connecticut teenager with the mitochondrial disease was treated in Massachusetts, delusional.

[Warpy]

7. it was 3 weeks for me

but that's because I got very sick with it and it was treated very early.

They've found out Lyme is a very old disease. It just wasn't until a bunch of suburbanites in Lyme, Ct. presented a cluster of symptoms that it was tracked down.

Oetzi, the "ice man" who was found mummified in an ice field in the Alps, was suffering from Lyme when he was murdered.

[nashville_brook]

11. that is fascinating. the whole concept of these diseases

and the way they vector is amazing. they really know how to protect themselves against treatment.

[nashville_brook]

10. i read about that teenager -- also watched the Under Our Skin documentary

it's terrifying how politicized this disease is, and as best as I can tell the controversy serves no purpose. what difference would it make if people showing chronic symptoms could get long-term antibiotics? who does that harm? let's get the abx out of factory farming first, if we're afraid of superbugs.

this actually seems like the sort of superbug that we should be worried about. And, i'm not even in the Northeast. I would have contracted this either in Florida or Tennessee. I'd been clearing brush at the Florida house, and went thru an autumn in Tennessee with an acre of woods that constantly required leaf-bagging. plus, i used to feel well enough to garden. it was my favorite thing to do.

Igenex -- that's what i'm going to remember to tell my doc. I have the book Solving the Mystery of Lyme and Chronic Disease, which is an amazing "textbook" on treatment. Halfway thru now.

http://www.amazon.com/Why-Cant-Get-Better-Solving-ebook/dp/B00C74YQZC/ref=sr_1_1?ie=UTF8&qid=1403317145&sr=8-1&keywords=chronic+lyme

[Nay]

14. A few years ago, I found and removed a small tick from my abdomen. A

few days later when I got out of the shower, I noticed the bull's-eye rash -- it's very distinctive. I zoomed off to the doctor for testing. The test was negative, but the doc said there were often false negatives. He gave me a course of cipro just based on the rash.

I have had no further problems, so the cipro did it for me. I understand that if it's not caught early and treated with some pretty heavy antibiotics, it can cause havoc in the body. I'm so sorry this is happening to you; I hope the docs find a treatment that works!

[nashville_brook]

15. thanks -- still waiting for my western blot to return

in the meantime i've been running a fever that just won't stop, and feeling wretched. all my other bloodwork is normal.

been reading more about CFS which is one of my longstanding diagnoses. it can indeed cause a fever. don't know which is worse: CFS, which is terribly non-specific, or Lyme which is terribly controversial.

it really sucks not having a solid, measurable diagnosis (that's respected in the medical community).