Lyme Disease and the Cunnigham Study

[dcmom]

Sf mom

 

did you test your Kids for Lyme while on antibiotics?

[sf_mom]

Unfortunately, YES .... both our children were on antibiotics at the time of testing. AND, with all the immune suppressing treatments we have had it might have also had an impacted on the results and why they are currently indeterminate. I am very glad we'll be testing for DNA as an alternative. I also think it will be helpful to put the pieces of the puzzle together if I am positive too. My story is similar to Lynn Johnson's in that most of my symptoms started after my first pregnancy and unfortunately with my second pregnancy I was administered steroids every 48 hours due to a full body rash between 34 1/2 weeks to 36 1/2 weeks when my twins were finally delivered. My symptoms then went off the charts after my second pregnancy and my hormones began to unwind.

 

-Wendy

Edited August 16, 2010 by SF Mom

[Kayanne]

I think of all the stories I have read on the forum....... Yours would be the most interesting to see if your son is now positive for LYME and co-infections through Igenex. Or, if he is harboring some difficult strain of mycoplasma too. Our Dr. was very clear that the standard mycoplasma tests are not that great either. Anyway, if you ever do retest please post about it as I know it would be helpful to many people on the forum.

 

Wishing you all the best in your son's recovery!!

Wendy, was this comment addressed to Lynn or PhilaPA?

 

Also, can you refresh my memory of your steroid use with you PANDAS kids? Did you do them at all? and if so was it just for 5 days...or a month? What was the result? inconclusive, improvement or worse?

 

I'm just curious if looking back now, if you have any observations about your steroid use in the context of Lyme?

Edited August 16, 2010 by Kayanne

[smartyjones]

Madeleine Cunningham is a keynote speaker at an upcoming lyme conference in October

 

 

what conference are you referring to?

[thereishope]

I just looked it up. It's the Lyme Disease Association http://www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=639:register-now-ldacolumbia-2010-scientific-conference&catid=7:conflict-report&Itemid=398

 

I don't think we can make an independent post about it without moderator approval.

 

Madeleine Cunningham is a keynote speaker at an upcoming lyme conference in October

 

 

what conference are you referring to?

[philamom]

Madeleine Cunningham is a keynote speaker at an upcoming lyme conference in October

 

 

what conference are you referring to?

 

The LDA conference is on Sat/Sun October 2nd & 3rd in Philadelphia. Am I allowed to post a link to it?

[philamom]

Thanks Vickie!

[Kay]

Madeleine Cunniham did tell me last week that Lyme does test in the CamK range. She is conducting futher research into this with other LLMD's. To be continued..

 

I also want to mention that when you call IGENEX lab they will tell you to NOT take the IGENEX testing while you are on antibitics! They suggest going off them for 10 days.

 

I just wanted to note I did call Igenex and also emailed them concerning being on antibiotics and was told when I called that as long as it was not urine or PCR test it would be fine. The email sent to me was this: The Western Blots, and IFA’s are all ok .

 

Hope I have the right information, not planning on going off of antibiotics as it causes a backslide for us.

[faith]

 

I am major confused here.

 

sfmom, forgive me, but you were the most outspoken about pandas and ivig treatments when I first inquired of pandas. you have a story about five kids on a playdate, your child had kawasaki's. I thought your child was 98% better on ivig. why are we persuing lyme? kawasaki's, lyme, and pandas? is it pandas or not?

 

I had question after question about the efficacy of ivig, and you and I have had much back and forth about it in the past. So are you saying it did not help your child. sorry, I just don't understand.

 

I totally understand some having lyme as a dx. or myco or whatever. but just as in pandas, it cannot be for everyone. As I said, I am majorly confused as to where this forum is going. so are you telling me i was right and ivig is not indicated for our kids' issues?

 

whoever has said that the NIMH has talked about lyme as being a topic is WRONG. it may have been discussed, but it is only ONE of the things to be tested for in the context of co-infections. the topic of the meeting was PANDAS, not lyme....

Edited August 16, 2010 by faith

[sf_mom]

Faith,

 

Remember I have two additional children with elevated CaM Kinase and a husband with unresolved strep titers so we are investigating all avenues for a possible infection for our entire family. I've outlined a list of additional tests we are doing in my other posts. When we first went down the PANDAS route we knew it was a strep trigger with sudden on-set like everyone else on this forum. AND yes we do have a playdate with all children having elevated CaM Kinase and symptomatic for PANDAS with one child having RF and another child with confirmed strep at time of playdate. Even I was confused by PacificMama's and LymeMom's post originally and felt it did not apply to our history or personal situation.

 

AND its true my older son is currently 100% with no TICs/OCD and even his stomach issues have resolved within the last week due to the addition of a cyst buster antibiotic 'I think'. However, I will add that we never followed Dr. K's antibiotic protocol. We went up and down on the azithromycin 250 m.g. to 500 m.g. Intuitively, I knew my son always did better on the higher dose of 500 m.g. and we kept him at that dose since last Feb. In May, I was getting nervous by the higher dose so decided to replace 250 m.g. of Azithromycin with 600 m.g. of Omnicef (so he was then on a combo of antibiotics) and my son began to shed his remaining symptoms of mild infrequent throat clearing and rubbing his nose (30 days in total). Because we were almost 5 months post IVIG I strongly felt that the antibiotics switch helped tremendously and indicated 'something' was still present.

 

I also became very nervous about LYME Disease/co-infections when my friends son was regressing approximately 8 weeks after each hdIVIG and he came back positive for co-infections to LYME. I needed to know WAS IT CONTAGIOUS.... our LLMD is saying no, some Dr.'s are saying yes. I DO HAVE TO RULE IT OUT DUE TO the cluster of children we have. So far it is indeterminate for our family but we are still on the hunt. If LYME/co-infections are involved I want to ensure my son was/is getting the correct antibiotic treatment to keep him at 100% and help potentially with the rest of our family. Also remember my younger children are greatly improved on antibiotics alone..... no IVIG treatments other than the Kawasaki's event.

 

I have been asked this questioned many times privately. I do believe the hdIVIG helped our son tremendously... I have never said otherwise. After his third hdIVIG to OCD stopped almost over night. BUT, we were always 'kind of following' a LYME like protocol in terms of antibiotics. So now it is difficult to say what worked. The IVIGs or the antibiotics. For my girlfriends son the IVIG treatments were very helpful for about 8 weeks and then he would start to regress and it was the right COMBO of antibiotics that have brought him to the 90% range in the last 8 weeks.

 

With LYME I know IVIG is used and as I learn more about how, when and what dose... I will definitely post. BUT I suspect it is used on a case by case bases but this is one question I forgot to ask at our last appointment. I think the bigger questions is there a child thought to have PANDAS then diagnosed LD that has only followed an antibiotics treatment and recovered (I have heard of a few from this forum). AND there are more than a few stories similar to my girlfriends where the child takes off post IVIG with the right antibiotics protocol. Perhaps the right treatment will ultimately be a combo of antibiotics and IVIG but I do not believe anyone knows for sure yet. BUT again if it is LYME there is always the herxing response from IVIG to be considered.

 

As for the NIMH meeting. I do know Dr. Brian Fallon was in attendance/presented and he is one of the leading experts on LYME. You can google Neuropsychriatic LYME Dr. Brian Fallon and find a ton of stuff he has written about LYME Disease, etc. It makes for great reading.

 

-Wendy

Edited August 16, 2010 by SF Mom

[Fixit]

First, i want to ask...can you come to GA to help me??? you have such a handle on the next step.

 

Second, to me, a reaction to lyme would still be panda...or the new title SOT...it doesn't matter the trigger...something happened and my kid is changed..could be celiacs(though another auto condition triggering it)..or myco p..or other parasites...

 

But i do feel faiths frustration in that the reality is there are so many triggers and why does something work and not hold, and as i've said in the past too many triggers to count not just strep and just tics can still be SOT.

[thereishope]

The difference with PANDAS is technically it is strep that is the original trigger. We, as parents and a forum use it is a broader sense. Now, Lyme, strep, Mycoplasma triggered symptomsall falls under the PITAND umbrella. PANDAS is a subgroup of PITAND.

 

First, i want to ask...can you come to GA to help me??? you have such a handle on the next step.

 

Second, to me, a reaction to lyme would still be panda...or the new title SOT...it doesn't matter the trigger...something happened and my kid is changed..could be celiacs(though another auto condition triggering it)..or myco p..or other parasites...

 

But i do feel faiths frustration in that the reality is there are so many triggers and why does something work and not hold, and as i've said in the past too many triggers to count not just strep and just tics can still be SOT.

[faith]

wendy,

you give a lengthy response, i'm not sure I totally understand, but I'll try. my feeling is that I don't understand if your child is so much better, why are you taking the chance of giving him other abx and such. You have been very vocal and adamant about ivig and pandas here on this board. I think what I am saying is that you may be jumping the gun on this and sening alot of folks scurrying around for no good reason. Lyme is not pandas. pandas is not lyme. I dont' care what anyone thinks re co-infections, yes, they could be at play. But my point is that you have given out alot of information re ivig, even when I was questioning it. and now you are going into this lyme thing and feeling like there is something else for your kid or someone else's kid? please forgive me, but there is enough information about lyme here on the forum for those that would like to persue it. I feel you are now giving out alot of staunch information re lyme, the same as you did for ivig. Is your child recoverd or not? i still don't know... I am still way confused as to what your child's dx is and if ivig is the proper treatement? how do you even know that ivig does not make it worse? you are correct in saying to check out other things before doing ivig, but you did not say that months ago re ivig. I think parents should not send others on a wild goose chase unless they are sure of what is going on. sure, everyone give ideas and ask for advice, but I am left very confused on your children's cases and your beliefs about ivig and pandas. 98% better? you need more than that? i'll take it, pass it over here please. All these meds you are comfortable giving your child? how do you know it is not the problem? Its one thing to try things on your children but I do wish you would be more responsible and not steer others that way until you know for sure what and how these meds fare on your child. I mean no disrespect, but there are alot of desperate parents here, and many are willing to follow the crowd, especially when they believe the person who says it knows what they are talking about.

[sf_mom]

Oh I get it.... you are upset by my posts. BELIEVE ME YOU ARE NOT THE ONLY ONE. I have gotten frustrated e-mails, PMs and phone calls from others stating I am confusing the issue of PANDAS and wish I'd stop posting. I too felt frustrated by LymeMom and PacificMama's post because it was just one more thing for me to consider and one more Dr. to see. Ultimately, I am extremely grateful that they were here to provide a different perspective. It took months for me to even consider that other infecting agents might apply to our situation (my son was doing well and we had a direct strep connection). I believed in the PANDAS diagnoses and protocol completely (except for antibiotic regimen)!!!!!! Honestly, Faith I didn't say check out other infecting agents months ago because we didn't know better..... I think you can appreciate the evolutionary process that has occurred for our family. AND, you can absolutely hang your hat on the fact that you took the wait and see approach. Maybe to your son's overall benefit!!!

 

This our story, I've been very public about our experience 'love it or hate it'...... AND my disclaimer at the end of every post should be is it is only antidotal information based on the experience of a mother with three sick children. We have taken huge risks to get our son well and my only hope is people will learn from our experience both good and bad.

 

Honesty... I am trying to pass along the 100% wellness of my older son by being so public with every thing we have done (it isn't always fun, my posts are not always liked and 'the forum' can surely question the choices we made for our family)...... Maybe I'm just trying collect some good health karma for my other two children who are not 100% but much much better on antibiotics.

 

I've got a couple big goals and one of them is TO STOP POSTING TO THE FORUM. Just this weekend, I told a friend to take a hammer out and break my fingers if I post to the forum one more time other than to update on test results. She lives only 20 minutes from LYME, CT so she is unable to do that thankfully. Another goal is to bring my other two children to complete wellness 'hopefully' without IVIG treatments. PLEASE recognize my daughter has 1/2 the immune system that others that are receiving monthly IVIG treatments for immune deficiencies. AND, her Iggs subclasses have only gone down... NOT UP (so on paper she looks much worse than she is doing). I remain hopeful for her too and I have taken the complete opposite approach we did with our older son.

Edited August 16, 2010 by SF Mom

[justinekno]

I was told this by IGenex too.

 

Madeleine Cunniham did tell me last week that Lyme does test in the CamK range. She is conducting futher research into this with other LLMD's. To be continued..

 

I also want to mention that when you call IGENEX lab they will tell you to NOT take the IGENEX testing while you are on antibitics! They suggest going off them for 10 days.

 

I just wanted to note I did call Igenex and also emailed them concerning being on antibiotics and was told when I called that as long as it was not urine or PCR test it would be fine. The email sent to me was this: The Western Blots, and IFA’s are all ok .

 

Hope I have the right information, not planning on going off of antibiotics as it causes a backslide for us.