Arming myself for the next round...

[lmkmip67]

We are going into IVIG #3 with no improvement as of yet, really. SO I think it is time to look at co-infections. I have not taken time to research what else I should be looking into yet. Dr. B did test for something, I just can not remember all of what they were. What would be helpful to me is if you all could tell me what types of co-infections I should be looking into, or at least making sure we were tested for. I was sort of a sheep just following what the doctor said and not paying a lot of attention to all the tests. I realize I have to, since we are not getting the desired result. I want to go into his office this next week with a list of things to ask him, and one is what else should we be testing for. Thanks you in advance as I know I have been posing a lot and venting lately. This place has been a godsend on so many occasions!

 

Lisa

[peglem]

It might be helpful if Dr.B's office could fax or email the lab results to you. Knowing what has been tested and what the results are before the next appointment will give you a chance to "digest" the info and learn about the implications...leading to more questions!

[LNN]

It's possible Dr B has already ordered a co-infections panel from Igenex. But if not, that's one thought. However, it's a pricey test and many lyme docs use other labs that accept insurance, such as Specialty Labs (now owned by LabCorp). If your lyme results have positive or IND bands, one other way at looking for evidence is to test C3a and C4a immune complexes. These are generally covered by insurance and can be done at your local lab. Mycoplasma is another thing to test for, tho he probably already has. Testing C3d complexes is a way to see if the immune system is generally activated, tho it won't tell you the cause.

 

Some on the lyme forum have found other things beyond lyme that are at play. A biggie is mold. If you have mold in the house, it can seriously get in the way of recovery from any chronic illness. Another is something called MARCONS, which is an antibiotic resistant staph infection of the nasal passages. You can read about both at www.survivingmold.com

 

Viruses can be a factor, as can mineral/vitamin issues.

 

Some of these things aren't in the focus of Dr B's practice. So you may need to get copies of all the labs and digest what you've done so far and then evaluate next steps. If you do end up leaving with req's for more blood draws, make sure Dr B instructs the lab to cc: you with results (tho Igenex will only send to the requesting doctor). That will eliminate the need to hound the staff for results.

[AmySLP]

Dr. B's receptionists are more than willing to fax lab results. WE've done this with each set.

[philamom]

It's possible Dr B has already ordered a co-infections panel from Igenex. But if not, that's one thought. However, it's a pricey test and many lyme docs use other labs that accept insurance, such as Specialty Labs (now owned by LabCorp). If your lyme results have positive or IND bands, one other way at looking for evidence is to test C3a and C4a immune complexes. These are generally covered by insurance and can be done at your local lab. Mycoplasma is another thing to test for, tho he probably already has. Testing C3d complexes is a way to see if the immune system is generally activated, tho it won't tell you the cause.

 

Some on the lyme forum have found other things beyond lyme that are at play. A biggie is mold. If you have mold in the house, it can seriously get in the way of recovery from any chronic illness. Another is something called MARCONS, which is an antibiotic resistant staph infection of the nasal passages. You can read about both at www.survivingmold.com

 

Viruses can be a factor, as can mineral/vitamin issues.

 

Some of these things aren't in the focus of Dr B's practice. So you may need to get copies of all the labs and digest what you've done so far and then evaluate next steps. If you do end up leaving with req's for more blood draws, make sure Dr B instructs the lab to cc: you with results (tho Igenex will only send to the requesting doctor). That will eliminate the need to hound the staff for results.

I think Specialty Lab is now owned by Quest. But I'm not sure if it can be done at the Quest Lab?? Or it may need a different lab script. My daughter first tested negative through Igenex for Bartonella, but she continues to test positive with Specialty. I'm glad I didn't give up on the Bartonella diagnosis in the beginning...since the choice of antibiotic is different.

[LNN]

I think Specialty Lab is now owned by Quest. But I'm not sure if it can be done at the Quest Lab?? Or it may need a different lab script.

My bad. You're right - it's Quest. Here's a list of their bartonella tests http://www.specialtylabs.com/tests/display.asp?keyword=bartonella&assay=1&technotes=0&noses=yes I think we only did 8852 and 8853 but don't have it in front of me. When we tested, it was prior to the Quest ownership. You may want to call your local Quest - it could be that you can get the blood draw locally and have Quest send it to the lab.

[tpotter]

If you do end up leaving with req's for more blood draws, make sure Dr B instructs the lab to cc: you with results (tho Igenex will only send to the requesting doctor). That will eliminate the need to hound the staff for results.

 

 

I totally agree with everything LLM has said, except that Igenex will send you a copy IF the doctor who ordered them signs off saying that they can have them.

 

Keep in mind that when trying to track down co-infections and other causes, it can get complicated, and you may have to go to multiple doctors (if you're not already.) Case in point, we have a "regular pediatrician" (at this point, he just does the physicals and not much else...he's the closest to home.) We also see a DAN! dr (even my non-Autistic son, because he's the one who will follow all the recommendations of everyone else, and he's the one who ordered the IV abx when my son was so critical earlier this summer.) We also see an LLMD, pediatric neurologist, immunologist, and gastroenterologist. Luckily the last 3 will talk to each other if necessary (the gastro and ped. neurologist happen to be friends, unbeknownst to me when I first went.)

 

I agree that you should look for other causes, too, because Dr. B. and I came to the same conclusion when the IVIG was only holding for one of my DSs, but not the other (he would get sick at about the 3 week mark everytime. Keep looking...it's like an onion...a pricey hard to peel onion, but an onion, never the less.

[lmkmip67]

Ok, yes, I need the results. I am going there in a week so will just get a copy of all his records. I have to for his pediatrician anyway. I know he did co-infection testing, but because I don't have the results, I am not sure what that included. I do know he said there were a couple of bands that were inconclusive, so said that might be something to look at down the road if IVIG wasn't giving the expected results. Thank you!!

[philamom]

I think Specialty Lab is now owned by Quest. But I'm not sure if it can be done at the Quest Lab?? Or it may need a different lab script.

My bad. You're right - it's Quest. Here's a list of their bartonella tests http://www.specialtylabs.com/tests/display.asp?keyword=bartonella&assay=1&technotes=0&noses=yes I think we only did 8852 and 8853 but don't have it in front of me. When we tested, it was prior to the Quest ownership. You may want to call your local Quest - it could be that you can get the blood draw locally and have Quest send it to the lab.

Just looked at my daughter's results from May. The Bartonella & Ehrlichiosis was performed at Quest Diagnostics Nichols Institute in CA. Her LLMD also runs a lot of testing thru the standard Quest Lab, but they are seperate results. He runs RMSF, Mycoplasma, EBV, ASO/DNASE/Streptozyme and others with the standard Quest.

Edited August 14, 2011 by philamom