I have been back and forth with symptoms quite a few times now (they usually re-appear for me after times of big stress) and I can definitely recognize now when it is lyme-related and when it's not.

I would advise you to try to get an appointment with an LLMD as soon as you can because if it is lyme-related, you don't want to go untreated for too long.

Or maybe if you do not live too far away you could just contact your old LLMD and explain the situation and get them to call a prescription to the drugstore for you until you can get in to see a new doctor?

My LLMD gives me a number of refills on my abx so that I always have some on hand in case my symptoms start to re-appear. This way I can just go back on meds when I start having symptoms until I can get back in to see him.

I hope your problems aren't lyme-related, however, it has been my experience that it just continues to come and go even after long periods of feeling great and being off abx.

My advice: if you think it's lyme, unfortunately, it probably is and it's best not to wait - get back on abx ASAP.
 

With Lyme, it is my experience that sometimes you just have to go with your gut when it comes to relapses.

You know your own body, and you know when things just aren't "right".

It's only normal to not want it to be lyme,
but you can only win the fight here by facing the bug head on.

As for the testing,
I'd try to at least get that done ASAP.
It has been my unfortunate exp. that ins. companies can de a real pain in the back-side to deal with unless you have lab reports to back up your diagnosis.

The last thing you want is to start feeling really lousy and then not be able to get the help you need.

It's very likely that your tests will not show anything, even if you are in an active infection.

Only a good Lyme doctor will know the best steps to take. If you have the testing that a regular doctor is likely to order, you may end up in more trouble with false negative tests.

If you can't return to your previous doctor, go to the seeking a doctor forum and ask for recommendations for doctors in your area. If I were you, I would do it now!
 

Going back to when I relapsed in 2001, contrary to some things said, I wasn't at all clear if it was a relapse or not. Because I wasn't sure, I delayed getting ABX, which harmed me in the long run.

When I was finally clear that I had relapsed (with the help of my LLMD), I got back on ABX immediately.

For me, determining if I had relapsed was a clinical diagnosis, based in part on my experience and the experience of my medical professional, because there is no reliable test for Lyme. Where have we all heard this before?

Also, I believe that part of the reason for my relapse was untreated metals AND candida. It left me with Lyme, metal toxicity, and systemic candida.

In some people, including me now, Lyme remains in remission (for me, following an experimental treatment in 2003), and it is a combination of metals and candida that is actually causing symptoms, and not Lyme.

As discussed on other threads of this newsgroup, symptoms of all three (Lyme, metals and candida) are similiar and affect each other in weird and synergistic ways.

i.e. it is believed that metal toxicity actually helps to cause candida in Lyme patients who are already susceptible to candida because of long term ABX use. ABX use destroys the good internal flora, which causes yeast (candida) to run rampant through our system, which depresses our immune system and leaves us vulnerable to bacterial infections, including borrelia (Lyme).

Ad nauseam.

More of my experience in this area is at http://www.lymetreatment.com/ICHT3.html.

I know that clinical diagnosis should be considered enough to get treatment, but often it's not.

Even the director at the practice where I go was leary of treating me on clinical diagnosis alone.
(He, by the way, is a LLD who not only lectures at LD conferences, but personally knows Dr. Burgdorfer and has spent time as a medical advisor for the LDF.)

Don't be afraid to fight for yourself esp. since you said the MD you are seeing is not an LLD.
You probably know a-lot more about this than he/she does.

As for being leary of having a neg. result hold you back, you can always be re-tested.

(see the analogy of "the fishes in the stream" under the topic "explaining Borreliosis [lyme] WB tests" on p. 3 if you haven't already.)

Hey, this is an ugly disease. Sometimes you have to get ugly right back.

Also, don't forget, there are other syptoms that can lead to other tests, ant those to other positive proof of LD.

For ex. neuro symptoms can be attributed to lyme by SPECT scan,
and GI symptoms can be attributed to lyme through endoscopic biopsy.

Don't let anyone else make up your mind for you.

I guess all I can say overall is just keep doing what you are doing, taking in all the info you possibly can so you can make the decisions that are right for you.

In my case, it was my LLMD that convinced me to get back on ABX because he thought I had relapsed, and I was still resisting all that meant...having Lyme again, having to buy expensive ABX, expensive doctor visits, more herxing, becoming very sick again, maybe I'll die this time, and on and on.

I didn't want to be relapsing, but it was my LLMD who convinced me that I was, and he got me back on ABX.

Lyme works in mysterious ways.
 

all I wanted to convey is that even though

we may not "want" what we are feeling are

lyme symptoms, we have to reason logically

not emotionally.

I've been on this roller-coaster ride since

1997 and I just want off!

However,
I've also come to the unfortunate realization that the Bb holds the switch.

I didn't want "slcd" to feel the need to hold back,
because as horrible as it may be,

we do have to accept our situation in order to fight it.

The reason I say to get the "hard" evidence is that lyme is so contriversial.

One of the LLMD's at my practice had a really good point.

If doctors keep submitting patients as LD+ on clinical evidence alone,

the ins. cos. will possibly have more "ammo" to turn down truly sick people,

if it is indeed proven down the road that some patients diagnosed with lyme did not have LD to start with.

We have so few MD's with the courage to actually treat us as aggressivly
(sorry about spelling) as is needed,

we can't take any chances losing even one because the ins. cos. decide the treatments were malpractice.

[This message has been edited by Glassfish (edited 25 May 2004).]
 

If you were on IV Rocephin, I read here that it has one of the highest relapse rates. I know it did for me.

I have been fighting since 1997(after probably 9 years of infection). Right now 3 1/2 months of Biaxin and Ceftin is enough to hold me steady. Some improvement, but many bad days (like today).

Hang in there and get in touch with your old LLMD or perhaps find a new one who would be open to being educated about the disease and would learn with you.
 

I was not saying to not get tested at all. I was saying to get the best tests that would best support a diagnosis, by going to a knowledgeable doctor.

Many have found that a negative Elisa was a dead end in the hands of an ignorant doctor.

Why waste your time and money with someone who doesn't know how to test properly, interpret the test once they get it, or how to treat even if it is positive.
 

Sounds like you could be relapsing, so you do need to see a LLMD.

Saw your request in Seeking a Dr.
Wish I had good news, but the closest LLMD is Dr J, member of ILADS.
He is north of Charlotte, North Carolina, but it's interstate all the way.

Not too bad, especially if you happen to be on the northeast side of Atlanta near I-85.

Other option is Dr C in Springfield, MO.
For opinions about him, read http://flash.lymenet.org/ubb/Forum3/HTML/004140.html

I am not a patient of either LLMD, but from all I know, they are about the only LLMDs in the Southeast.
If you're interested, I'll be glad to send contact info for both.

If you're on the southwest side of Atlanta, you may want to contact Alabama Support
Group(s)-there may be more than one.

I've heard of a LLMD (Dr M) in Mobile, AL, but I don't know a lot about him & don't have contact info for him. People in the Support Group should be able to answer your questions.

The person on LymeNet who was his patient has gone back to school so she isn't on LymeNet very often now.

Third option-
Do you think your new dr (who apparently has had no experience with LD) would be willing to learn?
Sometimes a dr is very caring & wants to learn what he needs to know to give proper care to a patient.
Others don't put the time & effort into learning. They just refer a patient to a "specialist".

It's possible that your new dr would be willing to read reliable info AND consult by phone with your LLMD who treated you last year.

If you think he/she is willing to read Dr Burrascano's "Diagnostic Hints & Treatment Guidelines.....", go to www.ilads.org/burrascano_1102.htm

Print a copy - 32 pages of excellent info.

At www.ilads.org print "Basic Info" - 3 pages of facts that everyone should read!!

Call your previous LLMD & ask if you can give his name & phone # to your new dr for consultation.

Your symptoms are typical of Lyme, but they also are symptoms of other Tick-Borne Diseases (TBDs).
Were you checked for Co-infections like Babesiosis, Ehrlichiosis, & Bartonella?
 

Everyone keeps mentioning how the lyme tests may show up negative, even if it is a relapse. I've heard of false negatives, but how do you know if you get a false negative?
 

It's a wonderful chance to learn a lot about Tick-Borne Diseases from someone with a lot of experience.
The need is so great in the Southeast!!!
So sad!!!

About the testing-
In late stage LD, the bacteria have moved into various parts of the body & there's not as much evidence in the blood to show Lyme is still present.

According to brochure from the Lyme Disease Foundation, "Tick-Spread Diseases", some reasons for False Negative tests are:
"defects in test sensitivity;
too low an antibody level to detect (e.g. they are bound to the bacteria, with too few free-floating; the patient is taking antibiotics or other drugs; naturally low antibody production);
the bacterium has changed, limiting recognition by the immune system;
the bacterium has masked itself in some way; or bacterial strain variations."

"False Positive tests occur due to test failure or cross-reacting antibodies (e.g. syphilis, periodontal disease)."

Just keep in mind - Lyme disease is a CLINICAL DIAGNOSIS with lab results being only one part of the evidence.

If I lived in Atlanta, I would NOT depend on anyone locally to treat an established case of Lyme (including infectious disease dr or prestigious medical facilities).
I haven't heard of any success stories but I have heard of people who have been mis-diagnosed & lost valuable time in getting an accurate diagnosis & treatment.

I highly recommend that you contact one of the LLMDs. Tell them you feel like you're having a relapse & need the earliest appt possible.

 

Do you (or does anyone else) have any information on the dr in Charolotte?

Also, does anyone know where I could find the best information about lyme disease for people who do not understand the disease? Over the past couple of years my family has gotten really good about it, but now I'm dealing with my inlaws who don't seem to understand at all. And if I hear one more time "Gee, you sure are sick alot" or "What makes you think you're sick again?" I may scream! lol I guess since they've always lived in GA, and it's not as prevalent down here, they think it's not really a big deal or something . . .
 

Logically I know I am having a relapse, I just didn't want to admit it to myself at first.

I will definitely look up that info for my family! Thanks!

Also, FYI - I don't know if anyone else has run into the problem that almost all LLMD's have you pay up front and then submit a claim to your insurance companies . . . I know this was a problem in NJ . . . Anyway, Dr. J's office actually accepts insurance. I don't know if that information will help anyone or not, but I thought I'd let you know.