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Need advice- Lyme treatment stalled. Where to go from here?


nemom
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Hello! Although I have been lurking around this site for awhile now, I haven't posted much.

 

I have two children who have tested positive for Lyme. DS#1 responded well to 14 months of treatment and has been off all antibiotics for 5 weeks now. He's doing well (fingers crossed!)

 

DS#2 (9 years) has been on antibiotics (Zithromax / Omnicef) for the past 9 months. His only symptoms (that we know of) are mood issues and a neck tic. The mood issues (anger, emotional, fussy, hard to please) come and go. It's not fun, but manageable. The neck tic was pretty strong at the start of treatment but settled down after a few days on antibiotics. It has been a constant, but it's pretty mellow and sometimes only happens a few times a day. It seems to pick up a bit when he is active or playing sports. It's the one real sign that something is still going on and I feel like it's always lurking in the background.

 

We did have a couple weeks this past spring where he complained of stomach aches and diarrhea. We added 1 tsp of Nystatin to his protocol and that did the trick. I gave that to him for a couple months, but have since stopped. He takes several good probiotics daily.

 

Our lyme literate NP recently had him tested for mold sensitivity based on Dr. Shoemaker's protocol. He has the dreaded mold and multisusceptible genes. C3a is low and C4a is within range. AVP is low. For detox, she wanted him to start with clay pills v. cholestyramine. We added that about 2 weeks ago. When DS was 2, we did have mold in our house from a poorly vented attic. It was professionally remediated. At the time, my son never experienced any adverse affects that we know of. He's been extremely healthy up until the lyme. We've never noticed any issues with strong scents or chemicals before. I ordered a ERMI test kit. I was actually pretty surprised by the HLA results.

 

Here are my questions:

 

Are clay pills enough for possible mold detox?

 

Is there anything else we should test for at this point in time? Other infections? If so, which ones? He does not have OCD and nothing has led us to believe that he has a co-infection.

 

Should we test him for yeast? Heavy metals?

 

I've been reading a lot of great information on this site over the last few weeks, but I have to admit, it's hard to know where to start. Although we love our lyme literate NP, I think it might be time to get a second opinion too.

 

Thank you in advance for your time! This is such a great community for info sharing and support!

 

 

 

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Well, I am certainly not an expert, let me state that upfront.

Few thoughts I had reading your post:

Really great the C4a test is normal! My understanding is that means no excessive inflammation going on caused by Lyme or mold.

Just because you test for a 'dreaded' gene does not always mean you have mold toxins....

And lastly,

the saying is Lyme usually never travels alone (meaning there is usually a co-infection)

the mood issues could be Bartonella - don't know if you tested or tried treatment for that...

Metamatrix has an excellent stool test that checks yeast, bad and good gut bacteria, and parasites (although parasite testing is hard to get an accurate positive)

Have you done a cyst buster with the Lyme treatment?

I'm glad your other child was able to complete treatment rather easily- that's great!

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I'm glad you decided to ask these questions...good ones. Here is my opinion, based on experience. If there was mold in your house, I would suspect that mold very well may be part of the problem. We used cholestyramine for the mold. I don't know if the clay would work (we used that, too, but not for mold).

 

And, I agree with S&S. Given the mood issues (I'm going to guess probably ragey-type moods?) that you probably are dealing with bartonella...at least. My whole family had/has it (DS20 who just had open heart surgery turned out to still be positive for bartonella...we had him tested because it could cause damage to the aortic valve, which is what he had.) My younger DS, though, is the one who had the bartonella rash (looks like stretch marks), but we didn't know for several years that that's what it was. I had foot pain...also a symptom. If you want to know for sure, Galaxy Dx is a good place to get tested for bartonella, and I would suggest that you do the 3-draw blood test (3 separate draws over a 5 day period to take into account the life cycle of bartonella.) If we had not done the 3-draw, DS20 would have come back negative, as it was only one of the tests on the 2nd day that came back positive. But, your Lyme literate NP might be willing to tx for bartonella without the cost of testing...for us, that consisted of azithromycin + flaggyl or tindamax + rifampin. And, tx went on for a very long time.

 

Also, I would highly suggest that you consider adding in ART, because there could be other things that are keeping DS#2 from getting well, such as parasites (if babesia is also in the mix, it is a parasite.) ART is a great way to find out what is going on. It's quite expensive to treat, but it might be a good way to use it to at least diagnose what is still going on.

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My ds and I went through mold treatment this winter (me) and spring (ds). According to our doctor, there are 11 steps to the entire course of treatment. The first steps were to move out of our moldy house and then 4 weeks of taking cholestyramine 4 times per day. Our doctor feels, as does Shoemaker I believe, that cholestyramine/Questran is the only medicine that will adequately pull out the mold toxins. So I don't think the clay (do you mean bentonite?) is enough.

 

I know another one of the steps will be to treat MARCONs/Staph in our nasal passages - a common problem with mold toxicity. Did your doctor test for this - it's done with a nasal swab. Before he will treat for the MARCONs, the doctor is focusing on Lyme and co-infections and viruses.

 

I don't know what the other treatment steps are yet (I didn't ask b/c I'm on overload at this point).

 

It's good you've ordered the ERMI test. I would say that if your ds was exposed to mold at a younger age and has the genetic susceptibility, it probably makes sense to treat it anyway. But knowing the current status of your house needs to come first because if there are still mold toxins in your home, you need to move or remediate before you start treatment.

 

Your C4A results are a bit confusing, as our doc says that his Lyme patients are almost always high, but in general below 10,000. His Lyme AND mold patients are almost always above 10,000. My C4A started at 25,000 and my son's was 17,000 before the 4 weeks of cholestyramine. Do you know what your son's actual number was? Did she test any other markers for mold? Our doctor tested several because he felt it was important to get a baseline, then treat, then check the numbers again when we thought we were nearing the end of treatment to make sure they had all gone back to normal. Otherwise, how can your doctor know when she's finished treating the mold?

 

I'd say it wouldn't be a bad idea to get a second opinion from someone who has a lot of experience testing for and treating mold toxicity. Not sure where you live, but we have a couple of good docs for this in northern CA (one of them is our doctor). The reason I say this is that 1) your ND recommended treating with clay, 2) seems to have only run one of the tests for mold toxicity (C4A), and 3) sounds like she didn't test for MARCONs. It's great that she brought up mold, as I think it is a common but hidden roadblock to successful Lyme treatment, but I think you want to work with someone who really knows this area well.

 

Feel free to PM me if you want to talk more about this. We've learned a lot in the last year, but it's hard to communicate it in writing. It's very complicated.

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Thank you all for the quick responses!

 

He did test negative for all co-infections through Quest. I understand that probably doesn't mean much. Bartonella sounds like a possibility. I would definitely characterize his moods as rage-like and angry. They come and go, thankfully it's not all the time.

 

For those with Bartonella experience: If I didn't want to commit to the hefty $ for specialized testing (at first) are there herbal challenges (like the Samento challenge for Lyme) that you can try? He is currently taking Zithromax and Omnicef. Would it make sense to switch out the Omnicef for something else? If so, what would you recommend we try first? Any additional advice would be well appreciated.

 

By chance, can anyone recommend a a well rounded practitioner here in New England? Sounds like we need a 2nd opinion for lyme / co-infections, possible mold/ yeast and anything else we haven't tried. MA, NH, ME would be ideal.

 

Thanks again!

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My LLMD felt that there was no need to chase our tail with additional testing. He felt that bartonella was a possibilty and he picked combos of abx that would address both lyme and bartonella at the same time. He recommended we spend the money on treatment and supplements, not additional labs. I know we used bactrim for many months early on for bartonella but we also used omnicef and that packed a powerful punch for DS.

 

I can highly recommend my LLMD, who's in the Hartford CT area. He has a long waiting list but gives priority to kids, so if you get onthe waiting list and let them know it's for a child, you may be able to get in in a month or two. He takes an integrative approach and uses both abx and herbals as well as supplements. Let me know if you want his name.

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