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Will PEX help a child with lyme?


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I know there are some whose children have had PEX with no success and then found that the real culprit was lyme. But is there anyone whose child had success (at least at first) with PEX, yet the culprit was still lyme. I guess what I am really asking is if my son has PEX with no improvement, can I assume it is because he probably has lyme. And if he has success with PEX (at least for a reasonable length of time) that my son does not have lyme. I would appreciate anyone's thoughts.

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Both my children have had PEX. It helped both for about 6 months (and the effect was dramatic, and wonderful.) Both have Lyme and co-infections (although we didn't know it at the time.) I am very thankful we got it when we did, because life was *&*# for them at that time, and it gave them 6 months of calmness (not 100%, but a good 80 - 90%!)

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Both my children have had PEX. It helped both for about 6 months (and the effect was dramatic, and wonderful.) Both have Lyme and co-infections (although we didn't know it at the time.) I am very thankful we got it when we did, because life was *&*# for them at that time, and it gave them 6 months of calmness (not 100%, but a good 80 - 90%!)

 

What caused the decline after the PEX? If it was lyme, why did it take six months before causing problems? Shouldn't the lyme have caused the PEX benefits to go away almost immediately?

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I wonder this a lot too. If you think of PANDAS, you have a genetic predisposition to develop an autoimmune disease (d8/17 marker) and then an environmental trigger Right? (very simplified)

 

If you only have the genetic predisposition for strep to cause that, then I would think that Lyme would only be another source of inflammation and not necessarily auto-antibody production?

 

It would still be problematic as and inflammation isn't good but maybe not THE problem persay.

 

I had a test done in 98 and came out negative for Lyme...now that was ELISA so it could have very well been positive. In 2011, on the Western Blot I had an IgG P41 and IgM p23... I suspect I had this all along. I still responded to IVIG and steroids (worse before better) to about 95% well. Was that last 5% inflammation caused by Lyme, maybe? My quality of life was still however great with natural anti-inflammatories.

 

 

The key is what is causing the autoantibody production I guess?

 

I wouldn't expect 100% though as you're not modifying the root cause of your problems. Some think it's intracellular cyst form bacteria, others have different ideas. PEX isn't a permanent fix. It's a bandaid.... a better one than SSRIS..but a band aid none the less.

 

I don't know if that really makes sense?

 

 

The only person in my family who tested 100% positive (IgM) for Lyme was DH, yet, we all got treated, and are feeling considerably better. DS15, who seems to be the most sick, has a whole lot of different things...strep (ASO = 300 - 400), erlichiosis (finally tested barely positive), bartonella (didn't test positive, but has the rash, and it's responding to abx), babesia (again clinically diagnosed...elevated liver enzymes, enlarged spleen, and low wbc), and who knows what else. He was also exposed to MycoP as well by me. Yet, Lyme testing only came back with 1 band positive (IgG41)

 

We are definitely treating the cyst form, and have been treating for all the co-infections as well. We've also been treating since last October!

 

IVIG only lasted about 3 weeks at a time, but PEX lasted a good 6 months. I believe it's because there was definitely strep, and PEX also takes out the toxins from the brain (I'm sure the whole thing attacked his brain.) Plus, every person reacts differently. I just know that we had 6 good months, and it was very well worth it...especially since we didn't know at the time that we were dealing with anything more than a reaction to strep (plus he was in VERY bad shape.)

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We did Pex and had relief for about 6 weeks. Then saw a backslide. Lyme was likely there prior to Pandas. We then went up and down for 10 months and tried IVIG. When that didn't work, we found lyme. The one thing Pex did was get rid of tics, which had been severe. DS went 18 months tic-free after Pex despite ups and downs with other symptoms. The tics returned for about 6 weeks this spring when we tried tindamax and stopped when we stopped the cyst-busting.

 

I don't think you can use a response to Pex to rule lyme in or out. If I could do it all over again, with perfect hindsight, I would have done a slew of blood work prior to either Pex or IVIG. I'd have looked at the HLA DR gene, the inflammation markers for mold, a urine test for pyroluria, blood work for immune complexes C3a, C4a and C3d, CD57, and maybe some others. I don't regret Pex - it was a positive experience and did get rid of tics, which was a huge benefit. But draining 15 vials of blood would have been more helpful than doing the heavy guns without this information. You may still get a picture where Pex makes sense for your son. But had we done the tests early on, it might have saved us significant time and money.

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Pex only replaces blood. Lyme and co-infections hide in tissue, organs and places that PEX wouldn't be able to touch. That's why it wouldn't last. I could see it relieving some immediate symptoms and maybe someone who's infection hasn't gotten the oportunity to go deeper.

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