Quest has lost my results on several occasions. I spent months afraid I had diabetes trying to track down my GTT.

Wow, that is pretty cool!
I never saved any ticks- just flushed em. Do they draw blood or would I have to find someone to do it?

Welcome itemeyes2K.

Labs are unfortunately going to get things wrong.

I have autoimmune Addison's disease, so I get blood work every few months no matter what. Out of all of my blood draws with Quest-only once have I had an issue. Sometimes it depends on the specific branch being sloppy, but my experience with Quest in general has been a good one.

I had Lyme disease when I was 10 years old. I had it for a year before it was caught-because it really wasn't well known. This was around 1989, and I live in NJ. We lived next to the woods, and I had ticks on me all the time. I can say this much about Lyme. Doctors are really torn on it. Even a lot doctors who are not LLMDs consider Lyme to be different than your average bacterial disease. It is a spirochete, as is Syphilis, and both have shown to be more difficult to treat, especially in later stages. There has been medical research that shows that the bacteria can morph into more than one form, causing the treatment difficulties. I was on and off antibiotics for a year when first diagnosed, because I kept relapsing with symptoms.

That isn't to say that I don't think a lot of the Lyme Disease boards are full of very obsessed individuals that are misinformed and paying attention to large quantity of pseudoscience...or that I think huge and dangerous doses of antibiotics are really a good treatment, even if chronic Lyme disease were to be a real thing.

The other possibility is that chronic Lyme is more or less an autoimmune issue that got kicked off by a longer term Lyme infection. Most of my current doctors feel that my being very sick with Lyme as a child (I had a range of symptoms before finally getting diagnosed-crossed eyes, almost constant tinnitus, napping all the time, emotional issues, migrating arthritis, headaches-and finally I woke in the night unable to walk-my knees had completely frozen-this is what finally led to my doctor ordering the test, positive blood work, and diagnosis) could have set me up for health problems later in life, such as the autoimmune Addison's I got diagnosed with about 6 years ago.

Now I have small fiber neuropathy of unknown origin, and every possible cause has been explored. My doctors all know of my Lyme background. When I was desperate this past summer, I did go to a Lyme specialist and had three months of intensive antibiotics therapy, just to see if there was improvement. Sorry to say that this was not the case, and I am unwilling to take endless antibiotics hoping to be cured.

Even if chronic Lyme does exist, there is some real divide about how it should be treated. Some doctors-often the LLMDs-are very insistent on antibiotic therapy. I theorize that this probably did help some people who unknowingly had late stage Lyme disease for a very long time. It is entirely possible, especially if you live in the Northeast. Deer ticks are tiny, and can bite in places you can't even see. Not everyone gets a rash, either. I didn't have one as a kid. Blood tests for Lyme can sometimes be misleading in later stages as well, because it ultimately depends on the person's immune system response since you are testing for the antibodies, and not the actual bacteria...and often times in chronic infections, the immune response can become cyclical. There have been individuals who tested negative, but after a few weeks of treatment and retesting, tested positive. A theory for this is that the antibiotics woke up the fight in the person's immune system.

Of course I claim to be no expert, and have no idea whether real Chronic Lyme exists. I do think there are a lot of people who are being drained of their money and resources, and have become completely fanatical about it.

I do personally feel that if one DOES have Lyme disease, late stage, chronic, acute, or otherwise, there would have been a time in which you might be able to pin point when you got it-rash or no rash. I was sick with what was thought to be a flu for about 3 weeks, more than likely this was the initial infection for me, because it was summer, and certainly flu season. I had a very high fever, and was very ill. Once it subsided, the parade of weird, vague, coming and going symptoms began. There was no doubt that there was something wrong with me.

I'm not sure if this has even been helpful, but I wanted to share my thoughts on it any way.

At our Jacksonville lab you had to bring in your sample with a slip filled out from your doctor. For example, I knew I had Giardia, but the doctor's lab could never prove it. It was easily discovered with another parasite at the lab. Rural health departments send to bigger city labs like Jacksonville. Also, if you don't have insurance you may be able to go through your health department. Most people don't think about it.

One time the doctor was sure a patient had hookworm. My department (6 of us) all worked on the same specimen looking at slide after slide. After about 20 minutes we had the proof. I was the lucky one who found the positive sample. Woo-hoo!


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Thanks Kitt, I'm sitting in the Jax Mayo Clinic waiting room waiting for scheduling. I have never been so happy, I just met with an internist who has taken all my information and spent time with me and is going to find answers that I need. Finally someone who is looking big picture and not just at pieces of me. She was actually prepared for my visit (and not just a resident!)


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Syphillis can be treated in late stages, but the permanent damage it has done cannot be undone, probably the same with lyme, but there isnt scientific research on this yet. There has been speculation that lyme leaves a residual autoimmune infection, and may account for the post treatment symptoms. Chronic lyme is used by the "believers", and disseminated lyme is used by the mainstream folks, but essentially mean the same thing.

I was on the lyme forums(healingwell, healthboard) for weeks(because i thought i had lyme), and they are filled with obsessed, and believe like its a religion, they were extremely hostile to anyone who spoke against, or contradict thier beliefs. even the forum rules for those boards have "dont reveal llmd locations,name,online". The reason why some people feel relief, could be psychosomatic, and some antibiotics have been shown to have immune modifying effect,(suppression) and may in fact be suppressing autoimmune or an inflammatory disease, instead. dapsone is one example of antibiotic, and it turns out its better at treating "dermatitis herpitiformis caused by celiacs". I did alot of searching around during my "lyme belief" phase, it turns quite a few sites have these list of symptoms that mimic hundreds of symptoms or disease, and i dont think these have been established by research, just people, trying to attribute everything to lyme.
I could not find any official or experimental research paper or data about chronic lyme disease. there have been some recent progress on lyme though.

Then there is that 24-36 rule where the tick has to be sucking your blood for that long in order to transmit it.
the biggest thing that concerns me about this lyme issue, is that they are helping to developing antibiotic resistant bacteria, by taking multiple antibiotics, they dont take it for weeks, or one month, they usually take it for several months to a year or more, no sane doctor would prescribe it this long, and im pretty sure some of them are pretty aware of antibiotic resistance. Theres already bacteria that are resistance to carbepenem(a broad sprectum)

Dapsone can cause nerve damage.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2921741/

And the doxycycline used in Lyme treatments has substantial
anti-inflammatory properties. It is now used to treat prostatitis,
and some gum diseases (using a smaller dose), and some other inflammatory problems:

http://www.ahdbonline.com/payer-pers...4-article-1334

Doxy does carry a risk for encouraging Candida ...so using a good Candida cleanse is probably helpful.

I understand the research, and have been on the boards for some time several years ago. I have spent endless hours researching Lyme in general. I agree there are fanatics, and many problems with resistant bacteria.

There are, however, diseases that require long term antibiotics (Whipple Disease for instance). It is rare, but it happens. Late stage Lyme could fall into this category for some individuals. Even as a kid, as I previously stated, I was on antibiotics for months because I kept relapsing. Thankfully, the last round seemed to knock the infection out. I remember being excited to walk around for a couple of months without my ankles throbbing.

All I am saying, is more research should be done on these matters. No one on here is a medical researcher or doctor, so our information will always be limited. Both neuros I have been to, who are very well respected, had red flags go up when I mentioned my childhood case of Lyme, both stating that theres a lot of muddy waters surrounding it, and there are some things that aren't known yet. One wanted to do a spinal tap to check for signs of it in my nervous system, despite my long term antibiotics decades ago, and the round I did this past summer. I declined it, but would consider it if I get terribly worse over the next few years.

Doxy does have some powerful anti-inflammatory properties-I think low doses of it are even used to treat some forms of rosacea of the eyes and face.

And absolutely right on the Candida thing, Mrs. D. the doctor who put me on a trial of antibiotics this past summer when the neuropathy first hit with the body wide burning had me go on a low sugar diet, along with the occasional dose of Diflucan.

I wasn't on doxy this past summer (Biaxin), although doxy is the antibiotic I was on as a kid. They had me on liquid bubblegum flavored form-and boy, to this day I still can't chew or eat bubblegum flavored things haha.