Need assistance with Lyme Treatment

[Ebersolk]

My daughter was diagnosed with PANDAS 2 1/2 years ago. We now just got Lyme testing back from Igenex. It says Igenex and CDC negative but has the following:

 

IGM

 

31 IND, 39 IND, 41 +++, 45 + and 83-93 IND.

 

 

IGG

 

31- IND, 41 +, 58 +

 

 

co infection

 

B. Henselae (Bartonella) IGM 20, IGG 80

E. chaffeensis (ehrlichiosis) IGM 20 and IgG less 40.

 

 

Which one is the more active?

 

Any thoughts on the results?

 

We currently treat w/Dr. B. I am looking for Lyme dr in PA/NY/CT/NJ/DE/MD.

 

Dr. B has recommended a change and antibiotics but I am concerned about what else we need due to possible herxing. My daughter currently on omnicef for PANDAs but wants to move to 250 mg of azith and 500 of Bactim. My daughter is allergic to penicillin. Thanks!

 

Kerry

[LNN]

Given your positive results for bartonella, it makes those IND and + bands more suspect. In the Helpful Topics section, you'll find a few links to help interpret each band's significance.

 

I think it's wise to get the body ready with detox. You've been doing some reading

I personally like milk thistle for liver support, but you shouldn't take it if you have an allergy to ragweed (same family of weed). There's also a list of medications that contra-indicate its use, but most of the medications aren't given to kids. Maybe someone will post it - it was posted just this week on another thread.

 

For gut detox, you can use chlorella or activated charcoal or bentonite clay. You can take chlorella any time, with or without meds. Charcoal and clay need to be taken 2-3 hrs away from abx.

 

For brain and general detox, many use alpha lipoic acid (ALA). It's a good anti-oxidant and a precursor to glutathione - the grand daddy of the body's antioxidants. (Oral glutathione is poorly absorbed and there's debate on whether it's as effective - something for you to read about and decide). However, I've recently come across things that say ALA is also a strong metals chelator - great, I thought! Except that it can move metals both out of and into the brain, so maybe not so great. But many here use it and we used it up until a few days ago when metals come onto my radar. You can also look at NAC (but watch for yeast), SAMe, 5htP...but do some reading. If your daughter's on any sort of SSRI, these wouldn't be good detox supplements for her.

 

For skin, there's epsom salt baths. My kids haven't noticed much benefit, others feel they help.

 

Water, particularly with lemon, is always good for the body and the kidneys. Coconut water is something else I've come across but have no experience with.

 

Also, strengthen the gut with probiotics. You're likely going to be adding more abx, so review what you're using and make sure you have a good blend and that it's in an adequate amount. I look less at quantity/CFUs and more at "output". If you have a well formed stool with regularity, that's a good sign. If you have loose stools or constipation, the gut may need additional support.

 

As for changing abx, I like omnicef because it crosses the BBB. My DS (lyme/Bartonella) is on omni + zith. But we've also used bactrim, augmentin et al. Bactrim is a common one for bartonella. My DD is on zith + bactrim (she too is allergic to the cillins). The only issue with bactrim is it's taste. It dissolves incredibly quickly and if your child holds it in her mouth before quickly swallowing, it will start dissolving and has a nasty taste/texture. Can't tell you how many times that stupid pill was spit back out and I was left with a mushy blob that somehow had to make its way back into the body (we found smushing the blob into the cream of an oreo worked if push came to shove). The liquid doesn't have that problem. DD never complains about the taste. It does carry a small risk of photosensitivity, but with colder days coming, that wouldn't be an issue until next summer.

 

The biggest advice I have is to not change both abx at the same time, or you won't know which one caused any change. I'd add one and give it several weeks. If you saw a change, particularly a herx, then I'd stay on the new+omni until the herx symptoms went away. Then I'd think about adding the second new one - but still keep the omni. So she'd be on a total of three abx for a time. Then drop the omni as the third/final step. Otherwise, if you drop omni at the same time you add another, you won't know if the response is from the subtraction and the omni was really doing a good job, or from the addition. This journey gets really confusing. So the more methodical you can be, the better.

 

As for an LLMD, what sort of approach are you looking for - completely "western", using abx only, or integrative, or naturopathic? And is your preference closer to Philly or NYC? I can give you info on the northern part of your list and others can give info on the southern part. Which is your preference?

[sf_mom]

LLM has made some great detox recommendations. We've used many on the list she provided at various times. One Detox that I'd like to add to the list is Clarity K Detox from Beyond Balance specifically formulated for children with chronic infections... all encompassing.

 

http://www.beyondbalanceinc.com/products

 

Additionally, have Dr. B or your future LLMD run the allergen test for penicillin to confirm true allergy if you haven't already. I believe its offered by Labcorp. We too thought our son was allergic only to find later he wasn't when we ran the test. We most likely had a herx response when we used pencillin based antibiotics previously. It is also important to be on combo'd antibiotics a.s.a.p. when Lyme is involved. Omnicef is one of those antibiotics when taken as single use and chronic infection is involved that can make you vulnerable to C-dif.... per one of our LLMDs. You would have obvious symptoms so NO need to worry about C-dif but would focus on adding the additional antibiotic.

 

Our son is 57 pounds, on Omnicef 600 m.g./Azithro 375 m.g/Mepron for Lyme et al

 

I am sure you'll get some great PMs regarding Dr.'s in your area. I am more versed in Dr. on west coast.

 

EDIT: Omnicef/Azithro is a great antibiotic combo to treat Bartonella. Bartonella is typically addressed first. Ehrlichiosis it one of the co-infections that should resolve along with Lyme.

 

-Wendy

Edited October 1, 2011 by SF Mom

[Ebersolk]

My daughter was diagnosed with PANDAS 2 1/2 years ago. We now just got Lyme testing back from Igenex. It says Igenex and CDC negative but has the following:

 

IGM

 

31 IND, 39 IND, 41 +++, 45 + and 83-93 IND.

 

 

IGG

 

31- IND, 41 +, 58 +

 

 

co infection

 

B. Henselae (Bartonella) IGM 20, IGG 80

E. chaffeensis (ehrlichiosis) IGM 20 and IgG less 40.

 

 

Which one is the more active?

 

Any thoughts on the results?

 

We currently treat w/Dr. B. I am looking for Lyme dr in PA/NY/CT/NJ/DE/MD.

 

Dr. B has recommended a change and antibiotics but I am concerned about what else we need due to possible herxing. My daughter currently on omnicef for PANDAs but wants to move to 250 mg of azith and 500 of Bactim. My daughter is allergic to penicillin. Thanks!

 

Kerry

[Ebersolk]

Dr. B considers her positive for Bartonella and Ehrlicchia (sp). She is 65 lbs and 4 ft 4 inches. She is on 300 mg of omnicef which is considered her maintenance dose. From reading all of the Lyme stuff, my guess is an LLMD would say she also is positive for Lyme. I agree with you about keeping on the Omnicef. I actually talked to Dr. B about that but left w/out that rx so I am going to email them to get them to call it into my pharmacy. I have enough to get me through next week and will only start the azith right now w/the omnicef. We have been doing culterelle only (2 times a day).

 

My preference would be integrative but realize I may have to wait a while to get in with anyone so will take any and all recommendations you have. She is on a lose dose SSRI. Thanks so much!!! Kerry

[sf_mom]

I think the Omnicef/Azithro is a great starter combo for Bartonella and will be effective while you wait for LLMD. She might herx when Azithro is added so make sure you document any obvious increase in symptoms for future LLMD appointment. When you start Azithro count as day 1. You 'might' be able to pick up on herx cycle within the first 30 days which will provide comfort when symptoms flair. LLMD might eventually up current dosage for both Omnicef/Azithro.

 

Yes an LLMD would consider her co-infection results as positive. It is very unlikely she does not have Lyme given the positive co-infections and borderline positive Lyme results. She has some very specific bands present even though they are IND. It is my understanding that only 10% of those positive for Bartonella will NOT also have Lyme. More likely that the Bartonella is suppressing immune response for Lyme. Most that treat for Bartonella will have 'converted' Lyme results the further they are along in treatment. Sometimes it is important to retest for co-infections 9 months to 1 year mark because some are finding positive results For Babesia, RMSF, Rickettsiae, etc later once the Bartonella is treated effectively.

 

-Wendy