Feeling very frustrated, Dr. J appointment seemed for nothing..

[Hopeny]

Lmpkin if you want a copy of the sheet where dr j talks about the bands pm me with your petdon email and I will send it to you. I feel overwhelmed pretty much on a daily basis, you're not alone

[3boysmom]

Have you tested for viruses as well? We found Coxsackie virus and added anti vitals to his augmentin. He is better but a piece to this puzzle is still missing as he is still struggling with issues. So back to the lab we go and we are going to re- run Lyme tests as well (3 years later). Best wishes! Linda

[cobbiemommy]

FWIW, this is our experience. We saw Dr. B and he recommended we also see Dr. J. We had previously seen an LLMD (2) who diagnosed son with Lyme/Bart and possibly babs. We paid for a lot of new testing and paid for a follow up phone consult but I can't remember how much. The two doctors worked together and shared all the lab results. One doctor's office forgot to send paperwork to the other, so I had to call and remind them. I'm not condemning them; but you must be proactive to make sure that all of the info goes where you want it to go.

 

Bottom line is you need to speak directly to Dr. J.

 

Here is a small citation discussing the relevance of Band 31 by Carl Brenner.

 

A second criticism of the CDC Western blot criteria is that they fail to include the 31 and 34 kDa bands.
This does indeed seem like an odd decision, since antibodies with these molecular weights correspond to the OspA and OspB proteins of B. burgdorferi, which are considered to be among the most species-specific proteins of the organism.
So why didn't Dressler et al. include them?
Answer: These bands tend to appear late if at all in Lyme disease patients, and did not show up with great frequency in the patients that the Dressler et al. group studied (though they did show up sometimes). As a result, they weren't deemed to have much diagnostic value and didn't find their way onto the CDC hot list.
However,

• while the absence of either of these bands from a patient's immunoblot result does not rule out Lyme disease,
• their presence is hardly meaningless.

Thus, many Lyme disease experts believe it is a serious mistake to exclude these two antibody proteins from the list of significant bands. The CDC's decision to do so seems particularly strange in light of the fact that it is the OspA component of Bb that is being used as the stimulating antigen in the ongoing experimental Lyme disease vaccine trials. As one immunologist remarked shortly after the 1994 CDC conference, "If OspA is so unimportant, then why the heck are we vaccinating people with it?"

Edited June 4, 2013 by cobbiemommy

[LNN]

 

Kara, I do not know much about lyme, we are treating pandas currently but feel lyme is a possibility although previous labcorp tests were neg. Something you said in this post caught my attention: that the lyme could be in cyst form. On my son's brain mri he has 2 cysts that they said were arachnoid. Wondering does lyme cause cysts in brain? Also remember urologist telling me he has cyst in kidney, this was after kidney stones.

 

Thanks, Kathy

The very first time we saw Dr. B. he tested for Lyme through a standard lab. She showed positive on 41 and 34. But that was dismissed as negative at the time. A year later, DR. B. ran a western blot through Igenex for Lyme and coinfections. By then (after a year on abx), only band 41 showed up as IND...but Bartonella was positive. So Dr. B. put her on Bactrim and Zithromax saying it would treat both the Bart (and Lyme if she had it) and referred us to Dr. J. Dr. J tested her a for Lyme a couple more times through Igenex, but nothing turned up. At some point I found the original results with from Dr. B with the 34 on it and showed it to Dr. J. He said that test confirmed exposure and put her on Tindamax, saying the Lyme could be in cyst form . Four months later, when he tested again, more bands started to show up.

 

My point in saying all this is that perhaps the wb is not showing anything because the Lyme is in cyst form. At your follow up, I suggest you ask this question and whether it would make sense to try a cyst buster. Maybe you could even write a letter and fax it to his office asking if this is a possibility. If he thinks it makes sense, maybe he would prescribe the Tindamax and bands will show up on the next tests that are at your follow up. (I'm tired...I hope I'm making sense.)

 

Kara

 

Kathy,

My rough understanding is that each spirochete curls up into a ball and creates a harden outer surface that is resistant to most abx and can be difficult for the immune system to detect. I never got the impression that many spirochete cysts joined together into a mass that would be detectable on an MRI. If they were, I don't think there'd be the controversy there is. But you can google Eva Sapi's research on lyme cysts to get a better idea. Dr Sapi is at Univ of New Haven and runs their lyme lab.

 

That said, lyme is also known to form biofilms - colonies of many spirochetes and other bacteria and viruses in a mucus glob that can also become cloaked from the immune system. I don't know if biofilms can be detected on an MRI. Dr Sapi's research might help with this idea as well.

[philamom]

Two of the most species specific Bb bands are 31 & 34. One of the reason the CDC testing is flawed is because they omit the two bands. And, any antibodies shown in IgG were once IgM.

 

I have to agree with mama2alex regarding his need to be very careful in treating. He's receiving many PANS patients daily- and now extremely under-staffed. Still, no excuse for the response you received. I like the idea of sending a fax addressed to Dr. J.

 

I would request a copy of all labs drawn (Igenex, Quest, etc) as well.

 

Also, he does phone consults on Sundays for established patients.

 

edit to add: J. Burras suggests running the epitope test, if only band 31 is present. So may be something to consider (unfortunately - additional cost) calling Igenex about.

Edited June 4, 2013 by philamom

[sptcmom]

 

Band 41 is Flagellin. and an Igenex double star band. Most certainly not insignificant. Spirochete, Mycoplasma, C diff are all flagellate and few others.

Sorry to be picky, but I don't think mycoplasma have flagella, and so are probably not responsible for a band 41 response.

 

"Mycoplasmas are parasitic bacteria with a small genome and no peptidoglycan layer. Several mycoplasma species have a distinct cell polarity characterized by a protruding membrane extension, the attachment organelle. They are able to attach to and glide on glass, plastic, and eukaryotic cell surfaces, always moving in the direction of the organelle. The gliding mechanism is unknown. Mycoplasmas do not have any appendages such as flagella or pili or any genes obviously related to motility, including motor proteins such as myosin or kinesin. However, a transmembrane protein associated with a cytoskeleton-like structure has been shown to be necessary for glass binding in Mycoplasma pneumoniae."

 

J Bacteriol. 2002 April; 184(7): 1827–1831. M. Miyata, W.S. Ryu, and H.C. Berg. Force and velocity of Mycoplasma mobile gliding.

 

Oh dear. Well, there are hundreds of species of Mycoplasma which are slowly being discovered. Many do have Flagellin. Have trained with Dr Fry, Dr. Klinghardt and Dr T and learned this. I spoke at the 2012 ILADS and Dr Fry was there as well and he spoke about Band 41 and implications with many ILADS docs including myself. FL1953 has been named and discovered. It was first called haembartonella, BLO then FL1953. Now Fry labs is talking about BabLO too. Its all the latest research in progress. Ive been using this knowlegde to help many many patients with great results and just wanted to share for those who want all information out there. Dr Klinghardt recently spoke at a conference and said the FL1953 maybe the most significant infection in some patients which has to treated first he's finding more and more in his practice.

 

Anyways like I said for those parents who do wish to have all the latest info out there the five star docs are using to help their patients. I have been uniquely fortunate enough to train with them and see them in action. Amazing and scary at the same time. Thats where ART comes in and helps move the treatment forward when lab tests are confusing. But ART is not for this topic.

Good luck.

Edited June 5, 2013 by sptcmom