Some notes from Cunningham

[P_Mom]

IgM does not cross the placenta or the brain so IgG is the immunoglobulin that usually

does all of the damage and is the one that indicates a previous infection. IgM can react

with various organisms such as strep and lyme agent.

 

I use Mandell, Douglas and Bennett's Principles and Practice or Infectious Diseases and it shows only IgM at the beginning stages

of Lyme during erythema migrans and IgG for the arthritis. This is on page 370 of the seventh edition

of this book.

 

They state: " Acc to CDC criteria, an IgM Western blot is considered positive if two of the following three bands are present: 23, 39, and 41."

"HOWEVER, A COMBINATION OF THE 23 AND 41 MAY STILL BE A FALSE POSITIVE."

 

"AN IgG Western BLOT IS CONSIDERED POSITIVE if 5 of the following 10 bands are present: 18, 23, 28, 30, 39, 41, 45, 58, 66, and 93 Kilodaltons.

 

"Approximately half of the normal population has IgG reactivity to the 41KDa antigen of the spirochete, and this reponse has no diagnostic significance."

 

"After 4-8 weeks, patients with active infection have positive IgG antibody responses regardless of the strain causing the infection."

 

".....IgM responses may persist for years after treatment. Thus, even a positive IgM response cannot be interpreted as showing recent infection or

reinfection unless the appropriate clinical picture is present....If patients with past or asymptomatic ifection have symptoms caused by another illness,

the danger is that the symptoms may be attributed incorrectly to Lyme disease.....The most common mistake is to confuse chronic lyme disease with chronic

fatigue syndrome or fibromyalgia."

 

"In the mid 1980s, the transplacental transmission of Borrelia burgdorferi was reported in two infants whose mothers had Lyme disease during the first trimester

of prenancy. Both infants died during the first week of life. Spirochetes were seen in various fetal tissues. However, in subsequetn prospective studies, no cases

of congenital infection have been linked to the Lyme disease spirochete. Although it is still possible that B burgdorferi may cause an adverse fetal outcome in humans,

it has not been documented conclusively."

 

" A counter culture has emerged tht ascribes pain and fatigue symdromes to chronic Lyme disease when there is little or no evidence of B burgdorferi infection. In such patients,

the use of prolonged potentially dangerous and expensive antibiotic treatment is not warranted.

 

 

IgM is not a response to Lyme agent

the IgG is the most important response. You probably never had Lyme.

Your boys probably have something crossreacting with strep and Lyme.

Did I send you the paper from some years back of crossreactions Lyme and strep.

Probably strep and lyme together may cause more severe symptoms but I would

be hesitant to say you have Lyme without any IgG. IgM is not diagnostic in

most instances for diseases. IgM is there all the time. IgG is diagnostic and should be

to at least 4-5 bands to be sure.

 

 

From Madeleine Cunningham

[dcmom]

Thank you.

[P_Mom]

You are welcome! I decided I have to share what I have learned from her despite the critisism I/she may get.

 

Just to clarify the last part of the post. She is responding to my question of why I continually test IGM positive (even via CDC standards) for Lyme. I have been round and round with it for years. Took major antibiotics for almost 2 years for "early Lyme." Even a picc line for IV Rocephin for a month. I still, to this day, test IGM positive for Lyme, and, after recently exhausting myself trying to figure out why by consulting with all kinds of docs (including LLMD's)...it has finally been determined that I will probably test positive for Lyme via IGM forever. They can't indentify why...they have tried. I had sooooo many tests. Lyme had been oficially ruled out for me. They now think (not only Cunningham) that I never had it in the first place. Could it be a PANDAS cross-reactive thing? Cross-reactive to who-knows-what! I still have absolutely no IGG response.

 

My son is the same way......but, no Lyme for him. Just IGM positive...no IGG response. Interesting, huh? Everyone...there is such a thing as false positives...especially with IGM. It even states it on the tests. Please be very careful in determining Lyme in someone who has been ill for a while and only tests IGM positive.

[Worried_Dad]

Wow - very intriguing and timely info, thanks for sharing!

 

I'm still waiting to hear back from Dr. C about our ds's positive IgM results. Did hear from Dr. Leckman (who is based in CT so familiar with Lyme as well as PANDAS). He recently met with both Dr. Charles Ray Jones and Brian Fallon to discuss their approaches to treating Lyme. Said he was quite impressed with Dr. CRJ, who uses antibiotics and IVIG in his practice (similarly to the PANDAS docs). Said they haven't seen a lot of Lyme among PANDAS patients but there have been a few. Given the symptom similarities and complexities, doesn't doubt that Lyme is sometimes misdiagnosed as PANDAS and vice versa.

 

His advice was: if your ds is doing well on current abx, maintain a steady course.

 

Got a lot to think about before our doc appt next week.

[P_Mom]

Worried Dad,

 

Sounds like great advice....regardless!

[sf_mom]

I highly recommend if you concerned about any Lyme results via antibody testing positive/negative, false positive/false negative, IgM/IgG to pursue follow-up DNA testing via the urine that will tell you concretely the presence of BB if positive. Its very simple process but does need the guidance of skilled Dr. to prescribe the proper antibiotics for provocation.

 

Our LLMD would take great issue with the information posted. He even touched on this topic at the most recent ILADS conference stating those that are serologically negative typically convert to IgG positive only when nearing the end of infection/treatment. The DVD is available for purchase at the ILADS website.

Edited December 24, 2010 by SF Mom

[P_Mom]

Not sure if that were meant for myself or WD..but...we have done the PCR/DNA testing. (negative) I usually don't post about my or my sons test results because I know they will be just refuted. I have NO DOUBT what is going on with myself or my sons. We have done ALL the testing possible...spent money we didn't have, etc. There Is NO LYME in this family. Is there ever a time Lyme doesn't exist???? I am starting to wonder. Several docs have told me....test extensively enough..you'll get the result you want. Test, test, test.......you'll get what you want...but, if it is negative..that is wrong too? Even the PCR is wrong if negative, according to recent posts. How do you ever test negative for Lyme, SF MOM?? Really curious here. You say it is diagnostic, but, if negative...it can be a false negative???

 

I am sure your LLMD would protest the info. posted...that is expected. I hesitated to post because of the " my LLMD's says this......" Who is to say what is right? I am just posting info. so other's can know it is not always Lyme.

 

I have seen the DVD. I wish it were understood that I have looked EXTENSIVELY into all sides. Even being a "lyme" patient myself. What is the explanation, SF MOM, for someone like me who has done extensive antibiotic treatment for Lyme and still tests positive for Lyme (igm) NO IGG. You would think by now I would test IGG positive. It has been 2 plus years...I took enough antibiotics to go into "bone marrow supression"..but not enough to test positive for IGG LYme? I did not start to see improvement until I saw a Rheumatologist (per Dr. C) and was started on a treatment for inflammation (sternum) and Fibrimyalgia. Now, I feel Much better. 2 years of antibiotics didn't touch it.

Edited December 24, 2010 by P.Mom

[momofgirls]

We met with Dr. J.. He is very impressive. No doctor has ever performed a physical on my child as in depth. He diagnosed my daughter with lyme and bartonella. He also explained to me that often children who have been sick for a very long time only show IGM bands which in his mind can indicate a chronic long term infection, especially when band 31 is present. Throughout treatment, he retests patients and likes to see them convert to IGG positive. This is a healthier response to lyme and shows the immune system is doing a good job fighting the infection. He also explained that elevated C3D (immune complexes) are antigen/antibody complexes. The antibodies within these complexes are IGG and when these are present, the IGG portion of the western blot may therefore be negative. This is why the IGM portion of the test is actually very important. These complexes are damaging in that they deposit in tissues and organs and create inflammation. Just because the western blot doesn't pick them up does not mean they are not being generated. This is why lyme testing is complicated and only an experienced lyme doctor will know to look for these clues. Immune complexes can be present in other disease but are very common in lyme patients. I asked Dr. J if had ever seen a child with lyme present like mine with tics and OCD. He laughed a little and said oh yes...maybe 500 or so probably more. I know Dr. J and Dr. C have been in contact but her diagnostitc criteria for lyme is quite different than his. Hopefuly they will continue to talk and all will benefit. I respect them both. I really feel it is important to investigate all infectious causes when your child is sick with "PANDAS" symptoms. There are a lot of parents on this forum that put all their faith into zithromycin and augmentin. Many many have tried IVIG and PEX and still their children suffered or maybe their recovery was long, difficult, and incomplete. Some of these kids get diagnosed with PANDAS without any raised strep titers and a positive response to a steroid burst. My daughter did well with steroids...that doesn't rule out lyme. Parents of children with lyme continues to post what we have learned only because we don't want other children who do not get well with typical pandas treatment to give up. I believe that when IVIG or PEX fail repeatedly...there may be a reason. There are other infections besides strep at work in many of our children. It's a little naive to think otherwise.

[momofgirls]

Pmom,

This doesn't have to be a nasty debate. I saw your update yesterday and really felt happy to hear how great your kids are doing. But there really are a lot of children still struggling. There are parents who have been members of this board for years and still their children suffer. Why??? Look, all that is really important is that parents get the information they need to help their child recover. Some of these kids reach their teens and have undergone multiple PEX's and IVIG's without much relief only to go on and recently test positive for lyme and co-infections. I am not saying it is all lyme but quite a bit of it seems to be. Your children are well and that is wonderful but what about the children who do not improve with standard pandas treatments?

Really not trying to start a dispute here but it can't go unnoticed.

 

 

 

 

 

 

 

Not sure if that were meant for myself or WD..but...we have done the PCR/DNA testing. (negative) I usually don't post about my or my sons test results because I know they will be just refuted. I have NO DOUBT what is going on with myself or my sons. We have done ALL the testing possible...spent money we didn't have, etc. There Is NO LYME in this family. Is there ever a time Lyme doesn't exist???? I am starting to wonder. Several docs have told me....test extensively enough..you'll get the result you want. Test, test, test.......you'll get what you want...but, if it is negative..that is wrong too? Even the PCR is wrong if negative, according to recent posts. How do you ever test negative for Lyme, SF MOM?? Really curious here. You say it is diagnostic, but, if negative...it can be a false negative???

 

I am sure your LLMD would protest the info. posted...that is expected. I hesitated to post because of the " my LLMD's says this......" Who is to say what is right? I am just posting info. so other's can know it is not always Lyme.

 

I have seen the DVD. I wish it were understood that I have looked EXTENSIVELY into all sides. Even being a "lyme" patient myself. What is the explanation, SF MOM, for someone like me who has done extensive antibiotic treatment for Lyme and still tests positive for Lyme (igm) NO IGG. You would think by now I would test IGG positive. It has been 2 plus years...I took enough antibiotics to go into "bone marrow supression"..but not enough to test positive for IGG LYme? I did not start to see improvement until I saw a Rheumatologist (per Dr. C) and was started on a treatment for inflammation (sternum) and Fibrimyalgia. Now, I feel Much better. 2 years of antibiotics didn't touch it.

[P_Mom]

Any time I post, it comes back as "nasty". I don't see anything "nasty" in my posts. The only ones who think I am being "nasty" are those dealing with Lyme. I am not on the Lyme forum...I am on the PANDAS forum posting about PANDAS and at times, how it relates to Lyme. You know...I held off for a month about posting about how well my kids are doing because I didn't want people to see it as ""hey, my kids are doign so well..." Perhaps my hesitations were right? How sad is that? But, then I decided I should continue to present all side of the picture and give people hope. I will probably go back into hibernation after today...sorry if the Lyme folks think I am "nasty"........not suprised at all.

 

Hibernation sounds good.....I'll awaken someday....Merry Christmas!

[P_Mom]

.

Edited December 24, 2010 by P.Mom

[momofgirls]

Pmom, you misunderstand me. I didn't mean to imply that you were being nasty but that other lyme debates have turned nasty and I really didn't want this one to become that way too. Also... you should always feel free to post ESPECIALLY when your kids are doing well. We all need those stories and I do wish you all well. I was just trying to have a healthy debate once again about ruling out lyme. I just don't think it should be dismissed if someone does test positive for lyme and a co-infection. No harm intended.

[peglem]

Any time I post, it comes back as "nasty". I don't see anything "nasty" in my posts. The only ones who think I am being "nasty" are those dealing with Lyme. I am not on the Lyme forum...I am on the PANDAS forum posting about PANDAS and at times, how it relates to Lyme. You know...I held off for a month about posting about how well my kids are doing because I didn't want people to see it as ""hey, my kids are doign so well..." Perhaps my hesitations were right? How sad is that? But, then I decided I should continue to present all side of the picture and give people hope. I will probably go back into hibernation after today...sorry if the Lyme folks think I am "nasty"........not suprised at all.

 

Hibernation sounds good.....I'll awaken someday....Merry Christmas!

I appreciate your posts. I didn't see anything controversial about your post. You were just sharing your experience, and we need as much info as possible! I do not have extra bucks for testing and there ARE diverging opinions on Lyme testing and treatment.

[PacificMama]

To all lyme inquisitive folks: Nearly every practicing doctor on the lyme front would take issue with much of what is presented here. That is, the doctors who actually practice exclusively in the treatment of tick borne diseases. The ones who TREAT hundreds and thousands of patients each year. The world is full of a whole lot of of once incredibly sick people, with IGM positive tests, who regained their health and life with TBD treatment.

 

Dr. Cunningham is a lovely and smart person -- but the information presented here is erroneous in so many ways. Quite honestly, I quite like Dr. Cunningham and I’m a little surprised to see the sources and science that she cites here. It’s disturbing to me, especially when I know that she is working with some of the top lyme doctors right now (that is, including some of their patients for her study). The information that she cites about refuting congenital transmission is particularly shocking. She obviously does not have the current studies documenting transmission, and is disregarding the long held knowledge by practicing lyme doctors that this is a VERY REAL occurrence. Borrelia babies are not always born extremely ill at birth – this is just wrong. Additionally, as it often gets overlooked – it is NOT just borrelia that plagues people. So many other infections to consider.

 

I’ll spare everyone my thoughts on the rest of it. But I will just make a plea for people to get themselves, or their child, face to face with the best and most knowledgeable medical doctor they can find and afford. In whatever area of specialty you seek, find someone who actually practices that area day in and day out. An MD, medical doctor, someone who is trained in clinical diagnosis and treatment. Someone sympathetic to your plight.

 

The irony of this is, well, ironic. Just about every disease mentioned on this board ultimately relies on a clinical diagnosis. And in the end, the proof is in the pudding. Are you getting better with treatment?

 

Best wishes to all for a healthy and happy new year.

 

Mary

[JAG10]

I was just trying to have a healthy debate once again about ruling out lyme. I just don't think it should be dismissed if someone does test positive for lyme and a co-infection. No harm intended.

 

I think this is Kelly's point....There seems to be no way to the satisfaction of those who frequently debate here of "ruling out lyme." Some people are intimating that "all PANDAS is really Lyme, you just haven't woke up to smell the coffee yet." Honestly, that is the way the debate is evolving. It started a few months back IF your child was not having success with the tiers of PANDAS treatment and you were stumped, check into lyme and co-infections. Now the conversation has shifted to say that you should do extensive lyme testing, see an LLMD, and see how your child responds to lyme treatment before possibly wasting your money on expensive IVIG or PEX. Each passing day this information is being repeated with stronger and stronger conviction and less and less humility. I realize parents have strong, passionate feelings and opinions about the treatments they are pursuing on their children's behalf ESPECIALLY when they are seeing results....but hasn't your own history taught you a little humility? Haven't you been wrong before and isn't there a decent possibility you don't have it all figured out this time either??

 

Too many old friends are going into hibernation and those old friends have a lot of wisdom and experience to share with the rest of us. Maybe we could all work on keeping doors open or at least ajar to a balanced debate.