Finally got to an LLMD

[RKF55]

Hello,
So I finally got to an LLMD here in Fl and she did much blood testing. I took with me the Western Blot and Elisa test that showed I had 4 active bands on it. The blood test she did showed that my CD 57 is 20 and my vitamin D and B 12 are real low. She wants me to take Doxy and Flagyl for next 4 weeks and see how I do. She states that she cant say for sure that Lyme is casuing my immune system to be beat down but she is treating me like it.
So my question is this: She suggest doing the Ignex test for Bartonella to be sure. Why isnt she sure with the 4 active bands on the Western / Elisa and the CD 57 being so low? And should I go ahead with the Igenx test?
I appreciate any advice you can give me on this.

[JackieCalifornia]

Any doc who respects IgeneX has, in turn, my respect.  I don't know why so much of the medical profession dislikes IgeneX, but perhaps it's just that the old fogies don't like their party being disrupted.  Hang tight!

[RKF55]

Thanks for the help, it is encouraging to talk to folks that have been thru or are going thru what I am.

The Igenex test she suggested was for Bartonella.

[JackieCalifornia]

This is confusing and frustrating, I know.  It's hard enough being sick, and then trying to ride herd on the docs ... well, I hear you.

Western blot and ELISA are the original Lyme tests, and several different labs offer them.  PCR (which is owned by IGeneX Labs, so no one else offers it) seems to be considered 'edgy' by docs who follow the usual path of Wblot-ELISA testing and diagnosis, and the docs who hold to the less progressive view of Lyme diagnosis and treatment still cling to Western blot and ELISA testing only.  (It puzzles me why docs would want to cling to the 'I think it's good enough' approach when there are other, different and useful tests like PCR ... but that's just where Lyme is for now.)  It is not unusual that a doc would not order PCR, because they have been taught that Wblot/ELISA are enough.

By comparison, my Lyme doc, who is quite 'cutting edge', did all three tests on me, because each data point is useful -- the more information, the more data points, therefore a clearer view of what is going on in the patient.
So I would not be surprised if your doc did not do a PCR test -- it's a split in the medical community that is not sorted out yet.

You say, "This is the second Western Blot and Elisa done by two differnt drs. The first showed four reactive bands, this one shows none."  Do you have a copy of the test results?  I recommend *always* getting a full copy of the test results, but a future doc may see things in the collected documentation that other docs just didn't see.  You say your current doc is "suggesting we use the Igenex lab test now."  IGeneX offers a bunch of tests (they have a website that's interesting, if you're up for it) -- do you know what tests your doc is thinking of doing?

You say, "I have been taking the anitibiotics for almost a week now and I feel worse than ever. I have read about the herxemer reactions people have had and I hope that is what it is."  Yeah, it might be.  It's the effect of the bacteria dying off and spilling their bad stuff into your body.  It's like a major garage cleaning going on. The other possibility is that you are having a bad (not therapeutic) reaction to the meds, but only your doc can say.  If you have not left a message for your doc with your current symptoms, I would do so, just so the doc can change things up is she sees fit.  Don't wait for the appointment which is 12 days from now -- just leave a message on the doc's answering machine/service.  She needs data to work with to help you find answers.  Just do it.

You say, "If the antibiotics are going to help me when will I know? How long does it normally take folks to start feeling better?"  Everyone is different -- there are maybe a half dozen infections that can come along for the ride when the 'Lyme' tick bites you, and that needs to be sorted out too so that the right meds are given for each infection.  I had Lyme and babesiosis, as an example.  Lyme doesn't go away overnight -- it takes weeks and likely even months to be fully well, and even then it's often not a snap back to glorious health of previous years.  Lyme is a major illness, and it takes time, so just go with the flow.  It's worth it.

And another thought:  Lyme messes with the endocrine (hormonal) system, which controls mood -- so you may be feeling that effect now too.  It will go away when the infections are dead and gone, so cut yourself some slack in the mean time.  We as a society have become used to getting, getting meds, and getting well, all in quick succession -- but Lyme isn't like that.  It will take a while, but it's definitely worth it.

Keep us posted, okay?  

[RKF55]

Sorry, Yes she tested me again with Western Blot and Elisa, I dont see anything on there about PCR though. This is the second Western Blot and Elisa done by two differnt drs. The first showed four reactive bands, this one shows none. This test was done thru Quest, she is suggesting we use the Igenex lab test now.

I have been taking the anitibiotics for almost a week now and I feel worse than ever. I have read about the herxemer reactions people have had and I hope that is what it is. Becasue if it is, then I am on the right track, if it is not, then I am still lost. I go back on the 19th to talk with her and see what she wants to do moving forward.

If the antibiotics are going to help me when will I know? How long does it normally take folks to start feeling better?

[JackieCalifornia]

I don't see a response to my previous question:

"has your doc given you with the following tests:  ELISA, Western blot, and (preferably through IgeneX labs) a PCR test?"

you might be focussing on the wrong things.  

I don't understand the doc's focus on CD57.  

[RKF55]

Sorry, hit the wrong button, thanks for the input and advice. I did go thru the latest blood test the LLMD did on me and I now understand her saying she can't say for sure it is Lyme beating down my immune system. There are pages of test results in it and in almost every categroy except CD 57, vitamin D and vitamin B12, I am in the normal ranges. It is the same as the other blood test drs have done on me. That is why this is so frustarting, I know how I feel but all the test keep showing that there is nothing wrong with me. I am taking the Doxcy and Flaglyl now so we will see I guess if it does any good. It would help mentally I think if someone could just say here is why you feel like crap all the time.

[RKF55]

Thanks for the input

[mojogal]

Most Dr's are now using the C4-A instead of the CD-57. The CD-57 doesn't seem very unreliable. A friend had a score of 450 yet is very sick. Mine went from an 8 to a 38 yet I still feel very sick.

[JackieCalifornia]

From what I have read recently, CD57 has not lived up to the hopes that some Lyme docs had for its predictability in measuring Lyme.  I have not kept up with the literature in any detail, but I think the excitement has died down.  How old are the threads you are reading here on CD57?

Rather than rely on CD57, has your doc given you with the following tests:  ELISA, Western blot, and (preferably through IgeneX labs) a PCR test?  I would definitely want those done before proceeding.  

And from what I understand, doxy is effective only in the earliest stages of Lyme.

[RKF55]

First, thank you for helping me with all this.

It is a medical group in Gainsville that I am seeing. My question is this: Following the thread on this site about CD 57 I am led to believe that a score of 20 is a pretty good indicator of Lyme. But the dr said that with the testing they did they cant say for 100% sure it is Lyme. So they want to do a trial treatment based on my symptons of Doxy for a month and Flagyl for a week to see what the reaction is. They aslo asked if I wanted to do the Igenx test. As far as the test is concerned, it is not a money thing, I am wondering if it is worth it. And if you dont mind me asking, you said" My test came back negative for Babesia even though my symptoms were very obvious". So they treated you based on symptons, did it turn out to be the right thing?

Thanks

[mojogal]

Are you seeing Dr R? If so I went to her for 2 years. She will give you copies. Co-infections don't always show up on the igenex tests. If money is an issue, I may just let the llmd treat me based on symptoms. My test came back negative for Babesia even though my symptoms were very obvious.

[JackieCalifornia]

This part is good!  "So I finally got to an LLMD here in Fl and she did much blood testing. I took with me the Western Blot and Elisa test that showed I had 4 active bands on it. The blood test she did showed that my CD 57 is 20 and my vitamin D and B 12 are real low."

This part is a little puzzling to me, but remember I am NOT medically trained:  "She wants me to take Doxy and Flagyl for next 4 weeks and see how I do."  To my understanding, if you have been infected longer than a few weeks or so, doxy may not be able to reach the Lyme bacteria to kill them, because the bacteria quickly learn to hide in places in the body (called biofilms) that need particular meds to break through so the antibiotics can kill the Lyme bacteria.  It's a question for the doc when you next see here.

"She states that she cant say for sure that Lyme is casuing my immune system to be beat down but she is treating me like it."  Does this mean she is not relying on antibiotics to kill the Lyme bacteria, but instead to beef up your immune system to be strong enough to kill the Lyme?  Doxy is the usual first medication given in a relatively new case of Lyme disease, but at some fairly early point after infection, the biofilms mentioned above cannot be pierced by doxy.  Other meds may be needed.

You say:  "So my question is this: She suggest doing the Ignex test for Bartonella to be sure. Why isnt she sure with the 4 active bands on the Western / Elisa and the CD 57 being so low?"  Because Bartonella is a separate infection from Lyme disease and needs different testing and often different treatment meds.  I didn't have 'bart' and so don't know the drill beyond that, but I did have another coinfection along side Lyme, and it was treated with separate meds from Lyme.

You ask:  "And should I go ahead with the Igenx test?"  I would, without hesitation.  Be SURE you get FULL copies of all your test results, and keep a binder or folder at home so they are all in one place.  Future docs may want to look back at your history, and getting copies later from a previous doc can be a real hassle -- you're never sure you got everything.  My motto is:  "I paid for the tests, I get a full copy of the results."  

Legally you may be entitled to the copies, but that doesn't mean the file clerk gives them to you:  standing at the copy machine all day is SUCH a drag.  It's easier to get full copies at the next appointment rather than wait till some future time and ask for the whole magilla, but that's often when corners get cut at the copy machine for all kinds of reasons.  

Keep us posted!