Lyme labs. Help

[Sonshine]

DS16 with PANDAS has these labs for Lyme

 

positive culture - Advanced Labs

Quest Western Blot shows:

IGM no positive bands

IGG 41, 30 reactive under the 60% cutoff

IGG 23 band 235% of cutoff

 

Also positive

Myco P IGM and IGG

HHV6 6.93

 

Would anyone recommend testing with Igenix also?

 

 

[SSS]

Your son is positive for Lyme disease.

 

IMO, you don't need a Igenex Western Blot,

but your treating Lyme Dr. may want to order co- infection tests (which are hard to show up in testing, and an experienced lyme Dr. will look at clinical presentation too and assess co- infection treatment).

[nicklemama]

I agree with SSS.

[Sonshine]

SSS and Nicklemama: Thank you for reply. We are at a crossroads with care providers. The labs for lyme were run by an integrative doctor with years of experience treating PANS/PANDAS and lyme. She prescribed Doxy. In the meantime, due to insurance reasons, we are not able to continue to see her. We were happy to get an appointment with a major reasearch university that treats PANS/PANDAS. They prescribed Cefadoxil to prevent strep but nothing else. In regards to positive lyme, myco igg and igm, HHV6 they said they "don't treat labs" I did get a call from them that same day requesting we come back in to discuss further, so maybe that message came from someone other than the doctor.

We went ahead and started the Doxy. As parents, it's hard to know what to do when doctors give conflicting advice. I also showed band 41, myco igg/igm and a positive band for yersinia? There must be mandatory reporting for Yersinia because our local public health department called me and said yersinia is black plague and wanted to know if a doctor was checking for that. No. He said otherwise, it is only positive due to cross reaction with Borreilia. Can you tell me what LLMDs say about congenital Lyme? I had Bell's Palsy as a teen while camping in Northern CA. Many years later I had a sudden onset of Lyme symptoms (numb bottom of foot, muscle twitching everywhere, odd tingling sensations, the feeling of bugs crawling on my face, the sense that patches of my skin were wet, etc. My doctor diagnosed "anxiety" All symptoms resolved and in recent years the only symptoms I notice are randon joints that ache for a few months then recover.

[pr40]

two observations.

First, your new drs don't treat labs. great. give them sypmtoms and ask them to treat symptoms.

second, it may not metter exactly which condition this is as long as it is treated with long term abx (perhaps a combo). ds should also make life style changes appropriate for someone with an auto-immune disorder, including different diet, supplements, exercize.

 

this is not a recent onset lyme, if it is lyme, and whatever it is now it concerns the whole organism now.

i am not sure why you got doxy. doxy is for recent Lyme infections and your ds labs don't seem to support that indication. myco is recent, however.

[msimon3]

Agree with all of the above. Doxycycline or Minocycline may also be used for neurological Lyme at late stages of the disease since they are effective in crossing into the brain and nervous tissue. Both drugs are good at killing Borrelia but they also can trigger the bacteria to morph into cyst form. For this reason, Lyme doctors often prescribe a cyst busting antibiotic as well, something like Tindamax or Flagyl.

 

Regarding congenital Lyme, the traditional viewpoint is that it cannot be transmitted from mother to fetus. This viewpoint is based on the fact that nobody has proved it to be transmitted from mother to fetus. However, Borrelia has been positively identified in stillborn fetuses and breastmilk by some researchers. These days the CDC agrees that it can "infect the placenta" but stops short of saying it could infect the fetus. There are many diseases that cross the placenta, including Syphilis which is caused by a spirochete bacteria similar to Borrelia.

 

Regarding the problem with doctors and insurance, I think many here have struggled with this same problem. There is not agreement on Lyme disease in the medical community, and each of us as consumers needs to ask ourselves "is this doctor qualified to counsel me on this? why?" Many of us conveniently see local doctors who are covered by our health insurance, but to cure this disease you need to go to a good doctor, period. Location and insurance coverage are sometimes barriers to seeing a good doctors and getting good treatment. Many here have had to go to a good doctor who is not local, who doesn't take their insurance, and who prescribes drugs which are not covered by insurance, in order to get well.

Edited December 8, 2014 by msimon3

[nicklemama]

Neither my son nor I see a doctor for our lyme that takes insurance. Very few who are qualified to treat lyme take insurance. So the doctors you saw don't treat lab reports. Hmmm, they wouldn't treat for any infectious disease that turned up positive on a lab report or they won't treat lyme? Either way, they are not the doctors you want to be seeing.

[ktdommer]

I would suggest seeking an ILADS as trained doctor. Mono antibiotic therapy will not get one well.

Can I speak to you from experience and say I believe you need to treat aggressively. Your son is 16 which leaves two years before he is an adult. Get him as well as you can as quickly as you can.

Although no big study on congenital Lyme, many docs know it is happening. I can truly say I passed on Lyme and the exact same coinfections to my boys.

I wish you the best,

Kari