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

[mama2alex]

Yes, one plus sign is enough. That indicates a definite positive result for that band, which is very specific to Borrelia.

 

One of the first antibiotics our LLMd put my ds on was Rifampin and we saw improvements pretty quickly. Rifampin is used to treat Bartonella, which is a common Lyme coinfection. After a month, he added an abx specifically for Lyme and we saw more improvement from there.

 

Did they send you the test results for coinfections - bartonella, babesia, erlichia, etc? False negatives on these are very common, as I'm sure Dr. J is aware.

 

I would make sure they give you copies of ALL test results, so you can go through them and make sure you understand what they are saying. Running results by folks on this forum can also be helpful. The doctors don't have the time to explain them all, and quite frankly, it's been our experience that they are not always correct in their interpretation of the results, so you have to be careful, do your own research and get other opinions. I think in general Lyme docs are overwhelmed with so many patients battling a very complicated disease.

The band 31 only had one plus sign, is that still enough? I did just call the office back and left a message stating I need more clarification. Also, can anyone tell me what a good combo for Lyme might be? I do think I will try to get in for the follow up sooner, but want to see if Dr. B would put him on a combo that would possibly help too. We did Omnicef with something for a month, but I don't recall what. My notes are all at home.

[sptcmom]

The Western Blot came back with a positive on band 31 for IGG results and IND on band 41 for IGM and IGG. I guess that means nothing though. So confused and actually kind of mad I spent $1400 that day for really nothing. NOt saying I wish him to have lyme. But I sure would like answers and to find a way to help him.

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

31 is also significant from what I know.

IgG or IgM are both significant with immune suppressing infections.

 

Also what Ive learned is the sicker one is the more false negatives. Some of my patients that get well faster or respond better are the ones who're CDC positive on the Western Blot thru Quest/Lapcorp.

 

Multi infections suppress the immune system and depelete the body of key nutrients. The titers we see are antibody responses. Antibodies are made by the immune system. A sick immune system with inadequate nutrients, autoimmunity etc certainly can't make a ton of antibodies. Methylation issues complicate this further.

 

We spent 1400 too and all negative except Band 41 for my 10 year old. Dr J said Bart is the first issue as per clinical picture. After a YEAR of treating and therefore lessening the load on the immune system and doing holistic protocols to add the nutrients scavenged by infections we finally had everything light up on Igenex.

 

Lastly Lyme is a clinical diagnosis and labs are supportive not diagnostic. Many docs treat to provoke before testing. Makes a lot of sense. Many will treat other issues like KPU, Methylation and organ support concurrently to help the body along.

My experiences and learning so far.

Edited June 3, 2013 by sptcmom

[Christianmom]

I'm so sorry for what you are going through.

 

My son was positive for band 23, another lyme-specific band showing exposure to lyme. I asked Dr. H about this because I never really understood what the expression "exposure to lyme" meant. I said, "Does this mean at some point my son was bitten by a tick that had lyme?" He said, "Yes." So it didn't mean that perhaps a tick with lyme had crawled on my son causing the band to appear. For that band to appear, he had to of been specifically bitten, directly exposing him to lyme.

 

I would think Dr. J would at least consider treating for lyme, especially since your son has been sick for so long. If he won't, you can certainly try another LLMD. I believe Dr. H is not far from Dr. J.

[lmkmip67]

Interesting. Thank you for all of the input. I am hoping to get a call back from Dr. J's office soon. I have no idea if he will talk to me personally or not but I would hope the nurses can at least directly as him my questions. We shall see. I admit I am frustrated by the experience so far, but we shall see. I will push to get answers from him and go from there. he told me in his office during the first visit that Ian has been exposed to Lyme. So yes this is confusing.

[JAG10]

Hmmm, I don't know Dr. J at all, but I don't like the sound of this. You paid top dollar and should get to speak to him directly. Nurses and office staff are not why you paid that $1400. You paid for his interpretation. I wouldn't get into it with the gate keepers again. Leave a message or send an email that you need to speak to him before the end of the day tomorrow. Having to call for results and then they don't make sense to you or match what he said in the office is highly suspicious of error.

 

Good luck! Jill

[lfran]

Two items to consider.

 

One, if you ran the labs through Igenex, once you get your copy, call and ask for a consultation with Dr. Harris (their lab director). At least in the past, he would talk to parents after they had their results for no charge and briefly explain things and give his opinion. If that doesn't work,he will probably still talk to you PCP about your results, if you want to go that route.

 

Two, if I remember correctly, if you act fast enough and Igenex still has your child's blood, they can do a follow up for Band 31 that can give further information (not free,though).

 

Third, you can do a urine dot blot test (also igenex). Not super expensive (used to be $60 a pop and they recommend three samples,so $180. A lot of false negatives, but a positive is supposed to be definitive. Not an antibody test -- it tests for Lyme antigen being shed in the urine.

 

I spent a lot of time in the past talking to Igenex. They were very helpful.

[lfran]

Here is the link to Igenex's request form. It is the Epitope test that I was referring to,as well as the Urine DOT Blot test.

[KaraM]

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

[JoyBop]

I agree that you should call the office and ask for an explanations. I would be so frustrated as well! Do you have a PCP or other doctor that would be willing to call him as well, like perhaps Dr. B?

 

I hope you get some answers soon to get your son the relief he deserves. Dont give up, and do get a follow up appointment earlier than Sept.

[Hopeny]

Per dr j's own handout band 31 igg, igm, ind significant for Lyme. Can I recommend you put a short fax together stating you are surprised by this statement that everything g was negative and ask that he personally review your case again? I find when I put things in writing I get improved responses there is no excuse but they are understaffed so sometimes you need to push harder. Fwiw my dd3 took cefdinir/zith combo. For older dd we started with abx and added supplements in about 6 or so months after. My strategy was not to do too much at once. We met with dr m today in ct (our second llmd) and he said its like a marathon with Lyme, start slow for the first miles and then amp it up as you get to the end. I'm so sorry, don't give up

[rowingmom]

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.

Edited June 4, 2013 by rowingmom

[Kathy4Him]

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

[lmkmip67]

Thank you everyone. The info is all so helpful. I will keep pushing and I will be putting together that fax. That sounds like a great way to handle it and ask him to look at these results again. I think I was just so overwhelmed today. I will send that fax tomorrow and hopefully get a call back. Something just doesn't fit, that is for sure. I will read all the responses again tomorrow when I am more awake. i will ask about the cyst form, too. good call! I really don't know what I would do without this place when I am having a meltdown. So thank you, again!

[mommybee]

We had a similar experience with Dr. Jones and I never went back for the follow up. I did, however, have a phone consult when my son reacted badly to a steroid burst. Dr. Jones confirmed my intuitive feeling that the steroids needed to be stopped because they were causing Lyme symptoms. He was otherwise of little use.

 

I wouldn't rule out Lyme if you live in New York or New England because the WB has false negatives. With a positive band 31, your son probably was exposed. Band 41 could be anything, including strep. Does your son have elevated ASO or ADB? If so, I think band 41 would pick this up.

 

Have you considered removing your son's tonsills? I've read that it can be a magic bullet for some kids. Have you tried IVIG? What does Dr. B say your options are? He's very systematic. Has your son been tested for Lyme co-infections? Bartonella, Ehrlichia, Babesia symptoms sometimes overlap with PANS. Have you considered doing the new Cunningham test?

 

My heart goes out to you.

[KaraM]

HI Kathy,

I am not an expert, either. And while I understand the concept to a certain extent, I feel like I regurgitate what I've read or been told more than anything else. So I am not sure whether when Lyme is in cyst form, the cysts are palpable or if you have a cyst, whether it can be tested or not. I do know that I was somewhat skeptical about the whole concept until I saw what happened to my daughter's test results after taking the cyst buster. I can elaborate more on this off line if you'd like.

Kara

 

 

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