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Negative lab results and Lyme symptoms


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Dear parents,

 

My 14 yo son was born as a healthy and beautiful baby. When he was two months old, my previous house was remolded. He lived in the construction house for two months and exposed to a lot of molds, bacterial and new chemicals. I even saw the molds in the air when the old well was removed. When he was 2 years old, his first blood test results
showed that his allergy levels to most molds were far beyond the highest scores from the test reference! He exposed to another mold place when we moved to a new home 3 years later. His second blood result was double higher than the first one!

He was diagnosed as autism at age 2. He also is allergic to gluten and dairy. In the past ten years, I tried DAN!, homeopathic remedies, NIDS and MAPS but my son DIDN’T respond to any protocols except GFCF diet and MB12 shot.

However, he was a calmer, happier and sweet boy. His behavior suddenly became aggressive in the summer of 2015 after he attended a summer camp couple times. He screamed, jumped, hit himself anywhere.

 

He started to experience frequently using restroom after taking LDN couple weeks (Stopped LDN on Dec 22, 2016).. He had vomit and diarrhea 1/30 to 2/3. He took a classic homeopathic remedy, Sul-ac 30c on Feb 4th. A few days later, he started to ask for pee every a few seconds although he actually didn't get it each time. He is very miserable and desperately asks for restroom anywhere he went (grocery store, post office, gas station, his brothers' preschool even pointed to row of houses he saw when I was driving and said he wanted to go "there for restroom".)

The behavior that repeated asking the same questions/ comments also became much more frequently. He has to repeat it every second although I or my husband have responded to him many times. He even stands out of the restroom and asks me "the men's bathroom, mommy" over and over and won't get in the door until I respond to him over and over.

 

He also walks to my bedroom in the middle of the night and repeats the same questions and won't leave until I wake up and respond to him over and over.

Another issue also became more severe is changing his mind when decides. For example, he usually asked that he wanted to wear his blue shoes after he has put his red shoes on and got in my car and leaving our house. It was about at least 1/2 hour or longer. Now, he changes his mind EVERY SECOND! He says that he is done for water drinking during the bedtime. When I'm going to take his bottle, he says that he wants to drink more water. I then give him the water bottle back, he says he is done after one drink. He again says he wants to more water when I'm trying to take the bottle away.... this repeat 10 times until I grab the bottle and leave his room. He is still yelling that he needs more water......He is out of control.

 

Extreme OCD: he insisted to ask, “I want to pee-pee in downstairs.” after he did this, then said, “I want to pee-pee in upstairs,” after he did, he asked, “I want to pee-pee in mommy’s bathroom (there three bathrooms in my house). He usually only did pee at the first bathroom but just flushed the toilet at other bathrooms. But he must do this before staying on his bed for sleep.

His hand writing is odd worse but sometimes became little better liked his baseline, and then became difficult to be recognized.

Other symptoms:

1. Nail biting,

2. Throat uncomfortable (nausea or threw up when the food is too warm or cold).

3. Joint pain (Complains a lot that one of his thumbs hurt. It looks little swelling but we didn’t find the reason after seeing three doctors included an orthopedist.)

 

Our pediatrician ordered Lyme test from LabCorp. The most results were negative except IgG P41 and P39 “Present abnormal”. We had the first appointment with a LLMD a few weeks ago after our pediatrician mentioned that my son seemed have PANS symptoms.

 

However, my son’s lab tests for Lyme below from Igx back to all be negative.

  1. Borreliosis – burgdorferi IFA-G/M/A (negative)
  2. Western B lot IgM- IGX and CDC/NYS (negative)

I was disappointment because I expected the positive results so that we can start the treatment right way for him. He is really struggling every day and this has made me overwhelming......

 

I understand that an individual who has had mold toxins in his body may be unable to respond to treatments headway until these toxins are removed. But I don’t know if the negative result means that he has no Lyme but maybe other medical issue. Is it possible that mold toxins blocked the pathway so we cannot see anything in his blood although the infections really exist in his body? I have heard that some Lyme patients had negative results while they did have Lyme symptoms.

 

---Did anyone have negative results from IgX but got positive results from Culture test via Advanced Labs later?

---Please share if you had experience with Dr. Shoemaker’s or other mold tests and treatments.

---Has anyone had experience with Dr. Nail Nathan?

 

Any advices and sharing will be greatly appreciated!

 

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Hello,

 

So sorry to hear your difficult story. But so much of what you say has been familiar to us with our (now 13-year old) PANS son. Our son has had extreme difficulty in making a decision in the first place, rather than changing the decision repeatedly.

 

I see some of what you describe as some of the many faces of OCD. I think of OCD as having a thousand faces - even more, ways to present. The enuresis (needing to pee all the time) is also one of the well-known symptoms of PANS.

 

If it were my son and my resources (financial and time), I would tend to not pursue a second lyme test, but check out mold as an initial cause. Environmental causes are one of the branches of PANS, as you can see from the figure at http://www.pandasnetwork.org/understanding-pandaspans/what-is-pans/ (need to scroll down to see it). The lower branch is "Non-infectious triggers", including environmental factors. Surely, mold qualifies in that category.

 

If you are no longer in an environment with any mold, the current problem may have moved on to an infectious trigger (for example, a flu or bug going around at that camp he attended in 2015). PANS can start with one trigger, and move on to have other triggers.

 

I don't know Dr. Shoemaker or Dr. Nathan, so can't say anything for or against either.

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Hello,

My older DS tested negative via INGENEX the first time we tested.

He had been sick a very long time and was not making antibodies against Lyme anymore at all.

His brother was CDC positive as was I.

We tried provocation (1 month on antibiotics for Lyme) then retested.

Results was CDC positive.

His body needed the antibiotics to help him make antibodies against the Lyme.

Please google provocation for Lyme testing for a better understanding.

 

Good Luck.

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Hello,

My older DS tested negative via INGENEX the first time we tested.

He had been sick a very long time and was not making antibodies against Lyme anymore at all.

His brother was CDC positive as was I.

We tried provocation (1 month on antibiotics for Lyme) then retested.

Results was CDC positive.

His body needed the antibiotics to help him make antibodies against the Lyme.

Please google provocation for Lyme testing for a better understanding.

 

Good Luck.

 

Now that is very interesting! I don't know a lot about lyme, but when we tested with Igenex, what came up right on the very borderline edge of positive was ehrlichiosis (another tic-borne illness, also treated with tetracycline abx's). We had been on doxcycline for a couple of weeks before the blood draw (a long story), and I always assumed that, had we not been on it, the result would have been stronger positive.

 

But putting_together_the_piece, you are saying that had we not been on abx, the result would have been below the threshold - and we would not have been diagnosed with ehrlichiosis!

 

When there is a lower limit for a threshold, and provocation changes the response, there have to be rules about whether the limit applies with or without provocation. This is well established in heavy metal testing, where provocation can bring out strong test results that otherwise would be below a threshold demanding attention. The tests are specific about "limits not valid under provocation". There have been lawsuits about just this, and the doctors doing the provocation and proceeding with (expensive) treatments with the provoked test results have lost in court - the protocol for the test and how the threshold limits apply are quite clear. The patients didn't get better, and successfully argued fraud.

 

But antibodies are not heavy metals, and I don't understand what provocation means as far as antibodies are concerned. But Igenex has a lower limit on some of their test results, that they clearly label as "not positive". I would really like to know what Igenex (or even the CDC) says about abx as provocation!

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