How do you know if Lyme Treatment is working?

[FLmom]

DS14 had a positive Igenex for Lyme last month. He has since been taking Byron White's A-L Complex. His only symptoms have always been Pans/Pandas, with no typical lyme symptoms. So I'm wondering how to tell if this treatment is working. The only thing I really have to judge it by is his OCD, which has not improved at all. Mood may be better on some days, especially if he missed taking the complex for a few days. He seems to be in a better mood when waking up for a day or so, but nothing consistent.

 

I am about to request antibiotics, and we may be traveling to DC to see a pediatric Lyme P.A., but I'm not sure if she is familiar with the Pans side of lyme.

 

I am still not sure what to look for, though, to tell if whatever treatment is working. Would I see improvements in OCD?

And I'm trying to decide between just asking our doctor here for antibiotics or traveling. Current doc is hesitant to give them to children, but was open to it if that is what I wanted. But since he isn't experienced with treating children with antibiotics I'm wondering if we should go ahead and make the trip out of state.

[SSS]

My PANS dd9 went back on antibiotics about 6 weeks ago (Biaxin, Ceftin, nystatin) after a very long break in treatment.

 

Here's what is happening: improved intelligence, clarity, can sit and concentrate, calmer, OCD greatly, greatly diminished, dare I say nearly gone.

 

We have brief eruptions of vocal tics/ sounds- maybe 2-3 times a day- I say it's die off.

 

I'd try antibiotics for Lyme, with a test like that, and no previous treatment. You need a lot of detox measures in place, probiotics, clean diet to support.

[FLmom]

Why did they start with two antibiotics? I know many people are on multiple. Is Biaxin a form of Bactrim?

[msimon3]

flmom, if you are thinking about visiting Dr J in DC, it will be worth the trip. They are aware of PANS and neurological symptoms caused by Lyme. We've been happy working with them.

 

I would pursue the antibiotics and work with a doctor who understands which antibiotics to use -- some are more effective than others when dealing with neurological infection.

[FLmom]

Yes, msimon3, that is the office, but with the PA. That is good know they are familiar with PANS. That was my concern.

[msimon3]

We worked with a PA briefly and initially on the thorough intake process. Now we primarily see a pediatric CPNP and Dr J.

 

We had similar concerns initially since we are a 10 hr drive from DC. I recall we either called or emailed them to get a good feel for their expertise before we made the trip. Once there in DC, we were pleased we made the trip. They were the first providers who sat down and went through a complete medical history from start to finish to get a "big picture" view -- all other providers in comparison seemed to focus only on areas related to their specialty.

[SSS]

Flmom, Lyme is one of the most difficult bacteria's, as it has/ converts to 3 life forms, and different antibiotics target different forms.

 

This link/ guideline is very helpful in explaining:

 

http://www.lymenet.org/BurrGuide200810.pdf

[nicklemama]

You will know treatment is working when you see symptoms diminishing. I've seen it in my son and I've felt it myself. My son seemed so classic PANDAS but we never could get him completely well and near symptomless with just PANDAS treatment. He has neurolyme. I have the arthritic form. I can tell you 5 months in on treatment and I'm feeling really well.

[FLmom]

nicklemama, I'm glad you are feeling better! How is your son? I see he had IVIG. I thought I read (perhaps on here?) that IVIG is contraindicated for lyme? Did I confuse that?

[rowingmom]

DD has a couple of lyme-specific IND WB Igenex bands, so although she has a negative lyme result, we know lyme is still involved. Her physical symptoms were mostly bartonella (one of the common coinfections), and treatment for that brought most of the resolution we have seen of her PANS symptoms.

 

Her physical symptoms didn't start until approximately 2 years after her PANS psychological symptoms had manifested, so in our case there was some lag.

 

During antibiotic treatment our LLMD prescribed both A-L and A-Bart. Initiation of A-L made no difference in DD's symptoms, good or bad. A-Bart produced an immediate (within 20 minutes) bartonella herx reaction (long bone pain, pick-like headache, emotional lability, motor ticcing), but after gradually increasing the dosage to 30 drops 3x daily and staying at that dosage for 6 months I really can't say that it helped resolve the bartonella infection.

 

She was on multiple combination antibiotics for bartonella while she was taking A-Bart and we discontinued A-Bart at the same time we weaned antibiotics and switched to herbals. After she had been on the herbals for a couple of months, and I had a handle on dosages, I tried reinitiating A-Bart, and got the same immediate herx reaction at 4 drops BID. She was still slightly symptomatic for bartonella when we started herbs, mostly in the form of shin pain with intense exercise, so she was probably still dealing with an infection load. At the time we discontinued abx (after 2 years of treatment) her bartonella IgG titers had declined from 160 to 80.

 

After 1 year of Buhner's herbal bartonella protocol (I decided to discontinue A-Bart) her physical bartonella symptoms have completely resolved, and any amount of exercise does not exacerbate them.

 

We are now focussing on the babesia-like-organism which seems to be responsible for her cognitive/executive function impairments. She was Igenex negative for Babesia microti, Babesia duncani and the Babesia FISH, but reacts to antiprotozoan herbs with a babesia herx - air hunger, sighing, dry cough, chest pressure. She did not have this reaction to malarone, an anti-malarial drug used to treat babesia.

 

I don't think IVIG is contraindicated for lyme, and may actually be helpful for inflammation caused by lyme antibodies through dilution. But if the infection remains untreated, symptoms will return as the IVIG is gradually processed out of the body and lyme antibodies become more concentrated again.

 

http://lymediseaseresource.com/wordpress/happiness-istotal-recovery-from-chronic-lyme-disease-ivig-part-one/

Edited July 24, 2014 by rowingmom

[FLmom]

I just spoke with my son's local integrative doctor. He gave a few month prescription of Doxy. At this point I'm wondering if I should at least have him go ahead and try it, and then after, say a month, if no improvement go see the DC doctor. With the cost of the appointment plus airfare I'd be looking at well over $1000. So it kind of makes sense to me to at least try the doxy. However, ds has had this for at least 2 years, possibly way more. Is there any chance that the doxy will be effective?

[FLmom]

I guess I should add that ds has taken Amoxicillin and Augmentin, but hasn't taken any antibiotics since January.

[rowingmom]

I think the present thought in the Lyme Literate community is that doxy simply drives the spirochetes into cyst form.

 

Symptom resolution occurs at this point, but spirochetes can remerge from the cysts causing relapse. This is why antibiotics that address all three forms; the cystic form, the acellular form and the spirochete form, need to be used.

[msimon3]

100% agree with Rowingmom. A LLMD will put together a protocol that attempts to kill the three known forms of Borrelia and avoid monotherapy which may lead to chronic infection / relapses.

 

Eva Sapi has a nice study here on Doxy's performance:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3132871/

[FLmom]

Can the cysts be tackled after? The A-Lyme Complex integrative doc put him on was supposed to hit lyme in all three forms. DS is also on Grapefruit Seed Extract which I read is a cyst buster.