Lyme Disease and the Cunnigham Study

[PacificMama]

I just returned from my daughters checkup with our LLMD, and I thought Id pass along some information I learned while there as it relates to lyme disease and the Cunningham study. We see one of the better known LLMDs, but Im just going to refer to him here as Dr. X. Another LLMD was also present Ill refer to him as Dr. Z.

 

* Note: Ill list out some of the more prominent notes: (and while Im not on the board regularly, I do realize that people here are in regular contact with Dr. Cunningham and have posted some of this information. Im absolutely not claiming to know details of the Cunningham study Im only relaying information as told to me by LLMDs).

 

1. Previously, Dr. X has been working with one of the PANDAS docs on cases where it has been determined that lyme is a factor.

 

2. Dr. X then began contact with Dr. Cunningham (not sure who initiated). As has been posted here, Dr. Cunningham is well aware that lyme disease can create positive results in her test for the presence of anti-neuronal antibodies.

 

3. Dr. X and Dr. Z both reiterated the above: that there are various possible infectious agents that will cause a positive on the Cunningham test. The testing is for 4 anti-neuronal antibodies. Whether a person tests positive for one or more, in any combination, there is no way to know which infectious agent causes the autoimmune dysfunction. Only that the dysfunction has been caused.

 

4. Dr. X has now been having (past couple of months) the Cunningham test done on his lyme patients that most closely resemble the profile being studied by Cunningham: Neuro dysfunction with symptoms of movement disorders, OCD, behavioral symptoms, etc. Of these patients, over half have turned up positive to the presence of one or more anti-neuronal antibodies. Dr. Z is also going to start running the test for his patients.

 

5. LLMDs have long been aware of the potential for lyme creating autoimmune dysfunction in patients. This can include such things as chrons, autoimmune thyroid, etc.

When the underlying bacterial infection is cleared, many times the autoimmune dysfunction resolves itself. Sometimes not.

 

6. Dr. X&Z: You can have active lyme bacterial infection causing neuro symptoms (and NO autoimmune component). You can also have active lyme bacterial infections causing neuro symptoms, and also have an autoimmune component.

 

7. Dr. X&Z: You ABSOLUTELY have to properly treat the underlying bacterial infection to completion. If you have unresolved autoimmune component, perhaps IVIG is warranted.

 

8. Dr. X &Z: Without a doubt, many of the patients who believe they are only dealing with strep, are actually dealing with underlying lyme/related infections.

 

9. These LLMDs are hopeful that if a patient gets a positive Cunningham test, then they will have better chance for insurance company to cover IVIG. (IVIG has long been used in lyme treatment when warranted).

 

10. That infectious agents may cause autoimmune neuro dysfunction is not new to LLMDs. However, the Cunningham study is of interest in that it is a test for actual, identified, anti-neuronal antibodies.

 

11. But also note, lyme bacteria alone without an autoimmune component can cause the identical neuro symptoms of movement disorder, OCD, behavioral, etc.

 

 

 

I just want to add my own reiteration that there is no typical PANDAS presentation that is any different from how the lyme bacteria (as opposed to the strep bacteria alone) brings on these symptoms.

 

Additionally, you can test positive for strep, and be reactive to strep, and STILL HAVE UNDERLYING LYME INFECTION.

 

***Unless youve had IGENEX testing done, and were examined by knowledgeable LLMD, you really cant discount lyme.

 

 

I do not know to what extent the prominent docs studying neuro dysfunction --caused by strep and lyme and other share information. (otherwise known at this point as PANDAS docs and LLMDs). I hope it continues to grow. Both Dr. X&Z mentioned, for instance, that Swedo has for some time acknowledged lyme in this equation.

 

IT NEEDS TO BE UNDER ONE UMBRELLA! The study of how an infectious agent results in neuro disorders (both caused by active infection and/or autoimmune component).

*I will post under the New Lyme board topic heading, but I really would hate to see the board divided up by which infectious agent causes the dysfunction. In many cases, people are carrying around multiple infections.

Edited August 15, 2010 by PacificMama

[norcalmom]

Thank you for the well summarized information. Did they mention CamKinase II at all?

[Suzan]

Thanks for that great information. I know I need to test my dd for Lyme with the Igenex test. She is terrified of blood draws so I avoid them at all costs. Plus, I have been avoiding spending the $$ which I don't have. She just got an IVIG so I need to wait a month but then I hope to somehow get it done.

 

Susan

[philamom]

Thanks for that great information. I know I need to test my dd for Lyme with the Igenex test. She is terrified of blood draws so I avoid them at all costs. Plus, I have been avoiding spending the $$ which I don't have. She just got an IVIG so I need to wait a month but then I hope to somehow get it done.

 

Susan

 

Suzan,

Depending on your insurance, you can submit as out of network. We were covered 70% of the bill. My daughter is also terrified of blood draws and now that we use the lidocaine cream, it's much better. Put it on an hour before and wrap with saran wrap. We also now have an agreement to let her know first thing in the morning if she is getting blood drawn. This ended her constantly asking "am i getting a needle today" (somedays she would ask 15-20 times). We also go to the same lab and I usually check in the day before to register and take care of any paperwork. She is still terrified, but no longer runs and hides under the bed, requiring two people to drag her out.

Melinda

[PacificMama]

Yes, it came up -- but it's not prominent in my mind what specifically was said. However, P.Mom recently posted of her visit to Dr. Cunningham that Dr. C stated that definitely lyme could cause high CamK.

 

Thank you for the well summarized information. Did they mention CamKinase II at all?

[Kayanne]

***Unless you’ve had IGENEX testing done, and were examined by knowledgeable LLMD, you really can’t discount lyme.

 

I believe you CAN discount lyme if your child has a definite history of strep infections causing symptoms, and responds 100% to PANDAS treatments. That is where my family is at, and pursing lyme in my daughter's case is unwarranted.

[PacificMama]

Of course it's possible that strep is the only infection that triggers neuro symptoms.

 

Not sure what you mean by "PANDAS treatments" in your case... but PANDAS/strep and lyme are both treated with abx and ivig. (with the exception of steroids).

 

As has been posted over and over, a person can be postive for strep, and be reactive with symptoms to strep, AND STILL HAVE UNDERLYING LYME and not know it. I'm not saying it's true in your case, just that it is often true as testified in this forum from several people.

 

 

***Unless you’ve had IGENEX testing done, and were examined by knowledgeable LLMD, you really can’t discount lyme.

 

I believe you CAN discount lyme if your child has a definite history of strep infections causing symptoms, and responds 100% to PANDAS treatments. That is where my family is at, and pursing lyme in my daughter's case is unwarranted.

[Kayanne]

Of course it's possible that strep is the only infection that triggers neuro symptoms.

 

Not sure what you mean by "PANDAS treatments" in your case... but PANDAS/strep and lyme are both treated with abx and ivig. (with the exception of steroids).

 

As has been posted over and over, a person can be postive for strep, and be reactive with symptoms to strep, AND STILL HAVE UNDERLYING LYME and not know it. I'm not saying it's true in your case, just that it is often true as testified in this forum from several people.

 

 

***Unless you’ve had IGENEX testing done, and were examined by knowledgeable LLMD, you really can’t discount lyme.

 

I believe you CAN discount lyme if your child has a definite history of strep infections causing symptoms, and responds 100% to PANDAS treatments. That is where my family is at, and pursing lyme in my daughter's case is unwarranted.

 

My daughter has been treated with antibiotics and prednisone.

[PANDASmcnuggetsw/fry/coke]

Thank you for the well summarized information. Did they mention CamKinase II at all?

 

I'm confused...I thought this WAS the Cunningham study?

PANDAS McNuggets w/fry/coke

[peglem]

Thank you for the well summarized information. Did they mention CamKinase II at all?

 

I'm confused...I thought this WAS the Cunningham study?

PANDAS McNuggets w/fry/coke

The Cunningham test, in addition to measuring CamKII activity levels, also tests for 4 antineuronal antibodies.

[PhillyPA]

When my son first got sick I thought it was Lyme. CHOP tested him and said it absolutely was not Lyme. I then took him to an expert in Lyme. He too thought the evidence was strong enough that it was Lyme. He was put on daily IV antibiotics (ceftriaxone) for five weeks. In order to do this he had to go into the hospital and be put under sedations and have a line put in his body close to his heart. Every day we gave him a ball of medicine through the port. During that time, the Lyme disease test and other tick borne diseases all came back negative. The Lyme doctor is one of the best in the country. We decided to continue the full treatment for a total of five weeks -just in case. My son improved but not that much. The lyme literate doctor said that my son does not have Lyme disease. He said that the reason for his improvement may be because the antibiotics were fighting some other unknown infection. (It was actually - strep). He said if it was Lyme,with this course of antibiotics, he would be greatly improved.

 

At the time I did not know about PANDAS. I wish I had. I didn't know about Group A strep and SC. I wish that one doctor would have looked at his history. I wish a doctor would have asked about my family history. I wish I could have told them about all the rheumatic fever in my family. It would have saved my family a lot of misery.

[PANDASmcnuggetsw/fry/coke]

Thank you for the well summarized information. Did they mention CamKinase II at all?

 

I'm confused...I thought this WAS the Cunningham study?

PANDAS McNuggets w/fry/coke

The Cunningham test, in addition to measuring CamKII activity levels, also tests for 4 antineuronal antibodies.

 

Thanks Peggy! There are so many rocket scientists here! (Not me:-)

[laurenjohnsonsmom]

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.

[sf_mom]

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!!

[philamom]

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.

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