When to keep pushing for Lyme?

[LNN]

My son went thru 2.5 yrs of lyme treatment after 2+ years of unsuccessfully trying to treat Pandas - so I understand why Pandas/Lyme parents are so eager to save others from wasted time. However, I agree with the others who say if there aren't symptoms, then don't treat. On the other hand, if the $200 is available, and there are some symptoms that don't seem to be resolving, then testing thru Igenex does give you on more data point. It's a personal decision and you should always follow your own gut, not the opinions of internet parents who only know a sliver of your situation.

 

That said, I found my own lyme/Pandas ticcer son has multiple triggers for his tics. Yes, he tics when he has an active bacterial infection - be it strep or lyme. But even a year after stopping abx and going months with no symptoms whatsoever, he may still have tics crop up and we've found that mold is a strong trigger for him. Not talking about black mold creeping up the walls of damp sheet rock. I'm talking about mildew on the windows in the tweens' bathroom (the one that's subjected to too long, too hot showers). Or mildew on the drum of the washing machine that made the clothes musty and caused two of us the itch like crazy until we cleaned the drum and re-washed the clothes. Or mold on the bottom of the window air conditioner drip trays (or in FL, air ducts of a central air system.). Within days of finding and eliminating a mold source, the tics stop.

 

So a mold source - in your home, in his school - might be something to rule in or out. You can test for inflammation markers that tend to rise with mold exposure and you can test a gene that indicated whether you can clear mold toxins well (HLA-DR gene). These blood tests have been covered by our insurance and can be done at any commercial lab. You can find more info here: http://www.survivingmold.com/diagnosis/lab-tests Also read "The Biotoxin Pathway" on the same site. Very helpful perspective.

[rowingmom]

Cara, 2 LLMD's told me: no symptoms, no treatment, even if a screaming positive test-

You sound in a pretty darn good place with your child- I agree with others, I'd try to stay as healthy as possible, keep a close eye, and try and live some life, regain some normalcy.

Because this whole thing can really take a family down-

 

Like LLM's son, DD's ticcing is also triggered by molds and yeast. She currently has no other symptoms.

 

I personally think you can spend a lot of money testing and still not find your answer. We treated for 2 years for bartonella, but found that DD's cognitive behaviour was being impacted by something that we either didn't test for or that returned as false negative. I don't know what it is, and at this point I don't care. The low dose herbal protocols we are using are working and she will remain on them for some time to come.

 

And I have to agree with SSS.

 

Many of us carry infections or even cancers that our immune systems are able to keep at low levels - that's what the immune system is for (think chickenpox that reactivates as shingles when the immune system is impaired). If your son's immune system is functioning properly, allow it to do so. Support his body with nutritious food, sunshine and some exercise.

 

And rejoice that you have gotten him to that place!

Edited June 9, 2014 by rowingmom

[BeeRae22]

My son went thru 2.5 yrs of lyme treatment after 2+ years of unsuccessfully trying to treat Pandas - so I understand why Pandas/Lyme parents are so eager to save others from wasted time. However, I agree with the others who say if there aren't symptoms, then don't treat. On the other hand, if the $200 is available, and there are some symptoms that don't seem to be resolving, then testing thru Igenex does give you on more data point. It's a personal decision and you should always follow your own gut, not the opinions of internet parents who only know a sliver of your situation.

 

That said, I found my own lyme/Pandas ticcer son has multiple triggers for his tics. Yes, he tics when he has an active bacterial infection - be it strep or lyme. But even a year after stopping abx and going months with no symptoms whatsoever, he may still have tics crop up and we've found that mold is a strong trigger for him. Not talking about black mold creeping up the walls of damp sheet rock. I'm talking about mildew on the windows in the tweens' bathroom (the one that's subjected to too long, too hot showers). Or mildew on the drum of the washing machine that made the clothes musty and caused two of us the itch like crazy until we cleaned the drum and re-washed the clothes. Or mold on the bottom of the window air conditioner drip trays (or in FL, air ducts of a central air system.). Within days of finding and eliminating a mold source, the tics stop.

 

So a mold source - in your home, in his school - might be something to rule in or out. You can test for inflammation markers that tend to rise with mold exposure and you can test a gene that indicated whether you can clear mold toxins well (HLA-DR gene). These blood tests have been covered by our insurance and can be done at any commercial lab. You can find more info here: http://www.survivingmold.com/diagnosis/lab-tests Also read "The Biotoxin Pathway" on the same site. Very helpful perspective.

LLM, I am very interested in this for several reasons, but not sure where to start or proceed.

 

First- would the 23andme test indicate the gene re: mold?? I've been considering doing this test anyway to test for MTHFR but quite frankly, I'm not in any position to spend a penny more than I have to for anything at this point, and it would seem to me like the MTHFR is going to be an unlikely suspect in what's been happening with dd, at least as a root cause anyway. We've started with folate drops just to "test" her folate reaction/theory anyway, so I'm not sure the 23andme test is going to be all that useful. (We are only up to 2 drops a day right now-- I'm going to dose her with more abruptly in a day or 2 to see if she reacts, but we just started minocycline 4 days ago, so I wanted to watch that first for changes... Nothing so far though:( ).

 

Next- we have mold in our attic for sure. Our roof is shot and we are in the (LONG) process of decision making about replacing the roof or putting an addition on our house. When we replace the roof, we will be tearing off all of the old (moldy) plywood, meaning really replacing the whole roof, not just the shingles.... But in the meantime, do you think this could be hindering dd from treatment?? How can I find out? Any thoughts?

 

I feel desperate to find something to help my daughter. This is crushing me as a mother that I can't do anything, and all these meds, and therapies, appointments, blood draws (another one tomorrow am that I haven't told her about yet) are just wearing on our whole family so much. And my girl is sad, that's the worst part. I can't believe how long it's been, and that we're still here in the same position, and nothing is making much difference. We're going on 8 months now, and she still isn't eating.

[LNN]

 

LLM, I am very interested in this for several reasons, but not sure where to start or proceed.

 

First- would the 23andme test indicate the gene re: mold?? It might - but I don't know how to find it. I know it tests some of the HLA genes but you'd need to know the snp RS id# and I don't know the Id# for the particular gene mutation we tested for. Dr M. ran our test thru labcorp - insurance covered it.

 

I've been considering doing this test anyway to test for MTHFR but quite frankly, I'm not in any position to spend a penny more than I have to for anything at this point, and it would seem to me like the MTHFR is going to be an unlikely suspect in what's been happening with dd, at least as a root cause anyway. - there's way more to neurotransmitter balance than MTHFR - that's the tip of the iceberg. I found 23andMe to be among the most informative tests we've ever done.

 

Next- we have mold in our attic for sure. Our roof is shot and we are in the (LONG) process of decision making about replacing the roof or putting an addition on our house. When we replace the roof, we will be tearing off all of the old (moldy) plywood, meaning really replacing the whole roof, not just the shingles.... But in the meantime, do you think this could be hindering dd from treatment?? How can I find out? Any thoughts? I would always recommend replacing a leaking/moldy roof before doing an addition. First, you need to do this to protect the investment you have in your house and protect resale value. Second, if you have mold, get rid of it before taking the risk the spores would contaminate other areas of the house. That's true regardless of whether you have a genetic mold sensitivity. Third, yes, having a mold problem and a child with an immune or autoimmune issue is most likely going to contribute to your problems. It's essentially adding an additional ton of bricks for her to carry. BUT - when you replace the roof, make sure you have people who understand mold remediation. You cannot just tear up the plywood and toss it down to the ground. You'll end up spreading mold spores everywhere. It needs to be removed by someone who knows what he's doing. You can search the forum archives on mold testing. If you have visible mold, you can buy a home test kit and take a sample - either a sample on a settle plate (petri dish), a cotton swab sample, or an actual sample of the material that has mold growing on it - and mail it in to have the lab tell you the species of mold. The kit is @$10 and to have the lab tell you the type is an additional $40. I just mailed in several samples from my house. You will read lots of negatives about this type of home test kit - but the negatives are more about the fact that it may not find hidden mold. However, it you can see mold, then there doesn't seem to be controversy over using this kind of kit vs. paying someone hundreds of dollars to do it for you.

 

I feel desperate to find something to help my daughter. This is crushing me as a mother that I can't do anything, and all these meds, and therapies, appointments, blood draws (another one tomorrow am that I haven't told her about yet) are just wearing on our whole family so much. And my girl is sad, that's the worst part. I can't believe how long it's been, and that we're still here in the same position, and nothing is making much difference. We're going on 8 months now, and she still isn't eating.

Have you told Dr M that you have a known mold problem? I'd ask him about the most economical way to look into this. He's very aware of mold as part of my DS's problems and has supported our sleuthing. Will be discussing it in greater detail with him at our next appt in a few weeks.

[philamom]

Regarding the igenex, we get reimbursed from our insurance plan 70 or 80%. So the western blot runs us around 40 dollars I believe.

[Rachel]

Hi Cara,

 

It really sounds like your son is in a good place healthwise. I have put Lyme on the back burner because my son's testing was all negative too. He also had his test from the same labs you mentioned. My son is just starting his journey with IVIG but he is not in a better place yet. He is having issues with strep. He also has vocal tics and they flare with infections. Otherwise he has very little trouble with them since he has been on a medication called Intuniv.

 

I have read from research that children may eventually outgrow PANDAS. Maybe this is beginning to happen for your son. As the immune system matures, many of these symptoms will go away with proper treatment. It sounds like you may be there. I am happy for you and your son. Please keep posting about the new antibiotic. I think our next step is going to be adding another antibiotic to my son's treatment plan. Take care and keep updating.

[cara615]

Oh Rachel i only wish your statement were true. We are still on daily abx and so far every time i try to wean him from the abx his tics come back within 48 hours. We are also dealing with a brother who keeps getting strep (3x this year). These strep infections have set off exposure flares in my PANDAS ds each time. So as i think the BRAVO probiotic is totally helping, we are not out of the woods.

 

Even with his tics so low right now, he is still ticcing. They are not completely gone. He still has an arm motor tic and still makes some noises which aren't really tics but then again probably are. Its so hard to tell because they aren't normal vocals like he was having in the past.

 

Who knows, may be this is the course of healing?? I will feel better when I can get him off abx (or at least on a prophylactic dose) and give his gut more time to heal.

 

I am also nervous about finishing our abx for his brother (who had strep). Apparently the first 10 day course did not get rid of all the strep because PANDAS ds flared once brother finished the abx. So I had extra and gave him an additional 5 days worth. Hoping this did the trick. We will know in 48 hours i guess....

[Rachel]

Hi Cara,

 

I still think you are on a healing road with your son. Have you ever read the book Saving Sammy by Beth Malone? They had a lot of ups and downs. Her son had to stay on antibiotics for a least 5 years. If I remember correctly. Hopefully you won't have to keep your son on them this long. Have you tried cutting the antibiotic back to half of the dosage or would his tic still come back? Half the dosage would be better than full if it did not cause his tic to come back.