The Lyme Disease Thread

[CarlaB]

I'm sorry, Brenda. Maybe you'll like one of the docs she suggested equally as well.

[kevieb]

i finally mentioned to my husband yesterday that i thought i should get tested for lyme disease since i am having so many health problems and i have been bit by a tick. my husband thought this was a GOOD idea. this may not sound like much, but to me this is a big deal because my husband hates to hear about medical things. i told him that i really appreciated his support. he thought it would be good to rule it out. i am amazed!!!

[CarlaB]

I'm so glad! Please keep us posted.

[dlp252]

i finally mentioned to my husband yesterday that i thought i should get tested for lyme disease since i am having so many health problems and i have been bit by a tick. my husband thought this was a GOOD idea. this may not sound like much, but to me this is a big deal because my husband hates to hear about medical things. i told him that i really appreciated his support. he thought it would be good to rule it out. i am amazed!!!

Hooray!!!!

[Cruiser Bob]

Just a quick note, as I'm really busy and need to be out of town again for a few days.

The IGeneX test is back - as per my orthopedic. Their interpretation is No Lyme, but they don't fully understand -a 3 page report. They are supposed to fax it to me, but it hasn't arrived yet.

So, we'll see, so far so good. Bob

[CarlaB]

Bob, what you need to see is if there are ANY Lyme specific bands. LLMD's will treat if there's one Lyme specific and band 41.

The CDC standards are meant for tracking purposes only (according to the CDC), not for diagnostic purposes. Most non-LLMD's will use the CDC standards for diagnosis.

So, let us know the positive bands ... we're anxiously awaiting!!

[dlp252]

Just a quick note, as I'm really busy and need to be out of town again for a few days.

The IGeneX test is back - as per my orthopedic. Their interpretation is No Lyme, but they don't fully understand -a 3 page report. They are supposed to fax it to me, but it hasn't arrived yet.

So, we'll see, so far so good. Bob

My report was two pages...the IgM was first...I only had two bands with IND on it, which is not positive by either CDC or Igenix standards, but my IgG had many positive bands...still not positive by CDC standards, but postive by Igenix standards. I gave copies of that to my "regular" doctor, who only saw the IgM report and said oh good, it's negative. I had to tell that that I DID have a positive IgG. Definitely interested in your positive bands.

[Cruiser Bob]

Here are my results, what do you all think, is it all in my head for real, or for make believe? NO I'm teasing, don't want to start on that subject - we've all been there before.

IFA, B BURGDORFERI G/M/A <1:40 TITER

LYME IgG WESTERN BLOT

18 kDa -

22 kDa -

** 23-25 kDa -

28 kDa -

30 kDa -

** 31 kDa -

**34 kDa -

** 39 kDa -

**41 kDa IND

45 kDa -

58 kDa -

66 kDa -

73 kDa -

**83-93 kDa -

LYME IgM WESTERN BLOT

18 kDa. -

22 kDa. -

**23-25 kDa -

28 kDa. -

30 kDa. -

**31 kDa. -

**34 kDa. -

**39 kDa. -

**41 kDa -

45 kDa. -

58 kDa. -

66 kDa. +

73,kDa. -

** 83-93 kDa -

Bob

[CarlaB]

Bob, band 66 is not specific for Lyme Disease, it's in many bacteria.

Band 41 is not considered specific either, though it is specific for bacteria with a flagella.

That is definately a negative test.

However, some of the sickest people have negative tests because their immune system is so overworked from the Lyme. If you have many of the symptoms, you might want to see an LLMD. An LLMD will do a differential diagnosis that is very complete (they test for everything). He also might want to do a trial round of abx, then take you off them for a retest. Sometimes this will take enough load off your immune system that it can produce antibodies.

It would be a lot easier if you had a clear answer from the test, wouldn't it?

There are many things that can cause brain fog ... toxins mainly ... apparently it's even the toxins from the Lyme that causes it.

[CarlaB]

Bob, I wanted to add, my LLMD found bacterial dysbiosis in my intestines, so now I don't have the intestinal issues I used to. He also discovered I was toxic in lead, so I'm chelating and this has really cleared my head.

My point is, you need a doctor who can determine what it is that's causing your issues.

Food intolerances/allergies, heavy metals, candida, Lyme, etc.

[Cruiser Bob]

That is definately a negative test.

YIPPEE - - from the guy who lives/works with ticks all the time.

Bob

[CarlaB]

YIPPEE - - from the guy who lives/works with ticks all the time.

Bob

Did you read what else I wrote??? It's like a celiac test, it's a test of antibodies, and can have false negatives. If your immune system is too overwhelmed by the Lyme, you can have a negative test!! A negative test does not rule it out ... unfortunately.

I hope you really don't have it ...

[Cruiser Bob]

Did you read what else I wrote??? It's like a celiac test, it's a test of antibodies, and can have false negatives. If your immune system is too overwhelmed by the Lyme, you can have a negative test!! A negative test does not rule it out ... unfortunately.

I hope you really don't have it ...

I'm still Yippee. One thing off the list - for now, in the process of eliminating things and getting to the bottom of what makes me go around. Time to make an appt. with the Internest (the king of referrals) and go to the next step of tests. My imune system was shot, really shot about 7-9 years ago. On the surface - - it's pretty good right now - - but that might not mean anything more than I'm able to tread water now -rather than drowning. Bob

[CarlaB]

I'm glad you feel good about the test! Keep looking till you find out what's wrong!

I had to ask if you'd read it all ... I've been married for 22 years, so I know that men sometimes see the part that has the answer they want, then skip the rest.

[Cruiser Bob]

I'm glad you feel good about the test! Keep looking till you find out what's wrong!

I had to ask if you'd read it all ... I've been married for 22 years, so I know that men sometimes see the part that has the answer they want, then skip the rest.

Guilty as charged

[mftnchn]

I have to agree with the need to look further before ruling out lyme. I didn't have Igenex testing, but did have a positive with another type of testing.

However, my LLMD went by my symptoms. He was willing to do antibiotics for long enough that I FINALLY began to improve (8 months), and continue them (plus other things) as I have needed them since. It has given me my life back. The response to treatment (both the herx as well as eventual improvement) confirmed the diagnosis.

[Cruiser Bob]

I have to agree with the need to look further before ruling out lyme. I didn't have Igenex testing, but did have a positive with another type of testing.

However, my LLMD went by my symptoms. He was willing to do antibiotics for long enough that I FINALLY began to improve (8 months), and continue them (plus other things) as I have needed them since. It has given me my life back. The response to treatment (both the herx as well as eventual improvement) confirmed the diagnosis.

I'm about to move back to Oregon, thus I'm stalling until I get locationally stable to start anything long term. Then I'll start looking for a good practitioner and move forward with figuring things out further.

Are the Herx a regular thing (like menstruation), or are they what/when/wherever? I haven't recognized any set pattern of higher distress - versus - lower distress over the past 10+ years (which includes food/feelings diary for over two years). I got the 24 day cycle thing from the OMG thread, but that doesn't appear to fit me/my body.

It still sucks being patient, or The patient, but it is fascinating to learn about my body. Bob

[kevieb]

i need to talk to my insurance to see what they will pay for as far as testing for lyme. i would really like to get tested through igenex-----but if my insurance won't cover them, what is my next best bet? can someone tell me exactly what i need to ask my doctor to order?

we are in the midst of getting the kids back in to school and trying to sell our house, so it may be a little while before i can talk to my doc about getting tested.

[CarlaB]

Are the Herx a regular thing (like menstruation), or are they what/when/wherever? I haven't recognized any set pattern of higher distress - versus - lower distress over the past 10+ years (which includes food/feelings diary for over two years).

I didn't have a herx cycle until I started medication. Some people have the Lyme cycle ... but the herxes don't start until treatment. My Lyme never cycled ... but the herxes are every 21-24 days. At least I can plan for them! I know my next one is due as early as Wed. of next week.

i need to talk to my insurance to see what they will pay for as far as testing for lyme. i would really like to get tested through igenex-----but if my insurance won't cover them, what is my next best bet? can someone tell me exactly what i need to ask my doctor to order?

If insurance won't cover it, I would just pay for the two Western Blots ... they're about $95 each ... and they are different, you do need both. I wouldn't bother with other testing.

Remember though, it's a clinical diagnosis, the tests are used only to support the diagnosis not to make it. If you have many of the symptoms, your best bet is to see an LLMD. Treatment is expensive, but WORTH IT!

[kevieb]

finding a LLMD will be the tricky part for me----we live a zillion miles from no where. actually, i have been looking into a treatment center for fibromyalgia and i noticed that part of their protocol is to check for undiagnosed disease and infection----and they specifically mentioned lyme disease.

are most labs able to do the two different western blot tests?

[CarlaB]

It's tricky for all of us to get to an LLMD. I have to travel from Ohio to NY to see mine.

No, not just any lab can test properly for Lyme. The problem is, most labs will test, but they leave out critical bands. IGeneX is the lab you want to use. I had the test kit sent to my house, then took it to my doctor to perform the test.

Most doctors are very uneducated about Lyme. I would guess the fibro center would fall into that category. There is a debate amongst the docs on how to treat ... we end up suffering for it. You can read more about this in the faq's section at www.ilads.org.

To find an LLMD, you want to go to Lame Advertisement and post under seeking doctors. You will most likely have to travel to see one ... most of us do. My LLMD even has people from Europe fly to see him!

Most doctors say that at the most 6 weeks of treatment is sufficient and we have to live with the rest of the symptoms for the rest of our lives ... after six weeks, I still could not get out of bed. Now EIGHT MONTHS into treatment, I'm doing about 80% of normal! I am afraid that at the fibro center you might have docs who only treat for a few weeks ... you can give it a try ... but I'd be shocked if they followed the ILADS standards.

Lyme docs check for everything. Their testing is very comprehensive ... mine even tests everyone for celiac disease! He checks it all because usually with chronic illness there is more than one cause. If I were treating only my Lyme Disease, I would not have seen the improvement I have seen ... I am being treated also for babesia, heavy metals, and bacterial dysbiosis ... all found my my LLMD.

[Guhlia]

Hi all. I have a question... I know that you don't always have to get a rash to have contracted Lyme disease. I'm 9 months pregnant and got bitten by a tick Saturday night. It hadn't burrowed yet, but there was a small spot of blood when I picked him off, so I definitely got bitten. Are there any risks to my baby?

[dlp252]

From what I understand the rash doesn't always come up right away if it's going to. (I don't recall ever having a rash or even a bite.) And, just being bitten is not always a given that you've got lyme.

Not having children, I usually skip over most of the threads on LymeNet about that, but I do think there is some risk of the baby contracting it if you've got it...although if you're at 9 months, I'm not sure the risk would be that high.

Carla probably knows better than I do about this, but if it were me, I think I'd talk to a doctor who is familiar with treating lyme as soon as possible...the early stages are when you have the best chance of getting control over it, and with you being pregnant, that might present different circumstances.

[CarlaB]

There is a risk of congenital transmission of Lyme Disease. The antibodies don't show up for weeks, so blood tests for it at this point are useless.

Did you by chance save the tick? You can send it in for testing.

I would see an LLMD. Tell them on the phone what happened so maybe they squeeze you in because normally there is a wait. There's no sense in taking chances for you or the baby. You can safely take Amoxicillin during pregnancy.

As far as for yourself, if you did contract Lyme from the tick and you see an LLMD who will treat for both Lyme and coinfections, you will have a big chance of being cured. Those of us who don't catch it early become chronic and only hope for remission.

How have you been feeling since the tick bite?

BTW, I had no rash from multiple bites, that's very common, which makes it hard to diagnose or to know what to do in cases like yours.

[Guhlia]

Carla, I've felt fine other than a stuffy nose. That could be from allergies though. Rainy weather really does me in. No fever or anything.

How do I find an LLMD in my area?

I didn't save the tick. When I got it off of me it fell and we couldn't find it at all. I vacuumed my kitchen immediately, but I don't know if I got it or not. I've been checking my dog and my daughter daily to make sure it didn't somehow find its way onto them.

I've been bitten probably hundreds of times before and have tested positive for the antibodies for Lyme, but have no symptoms. They told me that I had been exposed, but hadn't contracted Lyme, whatever that means. Yes, this was my family doctor, so I'm sure they know nothing about Lyme. This all took place before my Celiac diagnosis and the gluten free diet has taken care of 100% of my symptoms. We do live in an area where Lyme disease is prevalent. Could I have Lyme and just not have any symptoms yet (from a previous bite)?