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Posted 11/6/2008 11:29 PM (GMT 0)
I have a question.  I have not been diagnosed with lyme disease, still playing the doctor game to rule out everything else.  I saw a neurologist today and although I have some symptoms of ms (tingling, chills, dizziness) my mri is clear and also had a negative eng test from my ent.  I have joint pain in my elbow the most (also sometimes my knees), joint cracking, upper back discomfort, dizziness, shakiness, muscle twitching, etc.  My symptoms have been around for about 8 weeks.  The dizziness has gotten better and so have most of the symptoms although they are all still there.  My question is when people say the symptoms go in cycles, what does that actually mean?  Do symtoms completely disappear and then come back?  What is the typical time frame on this?  I know nothing about lyme disease is "typical".  Thank you for any insight on this.  I'm really just trying to figure out everything.  Of course, the neurologist did not think it was necessary to test through igenex.  He thinks they have an awful lot of positive test results.
Posted 11/7/2008 2:26 AM (GMT 0)
I have had a lot of the symptoms you're describing, including that they come and go. When I first got sick, they were always different so no one could figure out what was going on.

If I were you, I would definitely test through Igenex. I don't think it's true that they get a lot of positive test results, as your doctor said. I think the reason they get positives where other labs may not is because their tests are more specific, thereby lowering the chances of a false negative.

I look at "false positives" with Lyme as I would a "false positive" pregnancy test (what an analogy, huh!), not very likely. If someone has a positive Lyme test, regardless of the lab, chances are, they have Lyme.

I had a negative ELISA and 3 bands positive on a Quest Western Blot. The doctor I was seeing at the time told me I didn't have Lyme. I tested through Igenex and more bands came up, CDC positive. I started Lyme treatment and herxed immediately so I definitely have Lyme. But, had I not tested through Igenex, I wouldn't know that.

Sorry to ramble on, I just hate when doctors don't try every avenue to help their patients.
Posted 11/7/2008 6:53 AM (GMT 0)
Welcome Marylandgirl! I hope you are able to get a diagnosis and treatment soon for whatever is wrong! You are so right when you said that nothing about lyme is "typical". Symptoms and treatments are "all over the place". Symptoms can naturally wax and wane with lyme. This is probably due to lots of factors. Sometimes it may be related to the life cycle of the "germ" and when it causes damage or releases toxins. Other times these "creeps" seem to just go "dormant" or hang around not doing much, other times they really wreak havoc. Diet, stress, hormones, the state of the immune system, the dynamics among the coinfections, etc etc etc can cause changes. It seems to be never-ending and always keeps us guessing. Symptoms are quite capable of showing up, moving around, disappearing, and then reappering and the time frames can be just as surprising. Sorry there is no simple answer! Best wishes.
bablymers mom
Posted 11/7/2008 8:20 AM (GMT 0)
Marylandgirl,
I have had the same experience. My first symtoms were fatigue and back/neck pain. I've developed neurological and joint symptoms and many others. The symptoms change from day to day and sometimes from hour to hour. It's very frustrating waking up each day not knowing what to expect. I BEGGED doctors for tests. An infectious disease specialist said I didn't have lyme dispite common symptoms and intermediate test results (later confirmed positive by IgeneX).

Most doctors are not very educated on Lyme. You need to get an IgeneX test ASAP. It is expensive but the sooner you do it the better ($200 for IgG/IgM Western). I'm a medical scientist and I've reviewed the testing strategies (published in peer-reviewed journals) and I assure you that there is MUCH fewer false negative than false positives. The testing is still pretty inaccurate but IgeneX testing is the best available. In my opinion, Lyme is easier to treat if caught early.

Good luck.

By the way, where in MD? I think I got lyme in MD at my parent's house in Severna Park.
Posted 11/7/2008 2:11 PM (GMT 0)
Thanks for all the input.  I am in Frederick, MD.  Our backyard is wooded and deer are in it all the time.  I'm always out with my kids at sporting events, so it's possible.  I pulled a deer tick off my 5 yr. old this spring.  I have never seen one on me, but that is not surprising from what I've read.  I guess I need to find a dr. that will test me through igenex.  No one seems like they believe in it, so I guess I have my work cut out for me!
Posted 11/7/2008 10:39 PM (GMT 0)

Maryland Girl,

I agree with everyone on this post.  Get the Igenex test, pursue Lyme aggressively. 

Addressing your symptoms "wax and wane" question.

One major realization I had during diagnosis was that i was having my symptoms daily/hourly.  They are constant.  I live with them.  Therefore, its not a migraine, or etc, or something I am dreaming up.  My body is infected. 

chief

Posted 11/7/2008 11:30 PM (GMT 0)

Marylandgirl-

I have many of the same symptoms off and on for 14 years now. Constant and building for the last 2 1/2 after a nice month long round of steroids!

My endo (awesome) recommended him.

I saw him for the first time yesterday. He confirmed my Neuro Lyme clinically and I now wait on a million lab tests. Go back Dec 3 to get results and start treatment.

He is big on diagnosing the other infections that can be present with Lyme- Babesia, Bartonella and Erlichia. His premise is that underlying "simmering" infections cause chronic disease.


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