DS feels far worse following 1st PEX treatment; similar experiences an

[DsMom]

Hoping the wonderful folks on this forum might share thier insights with me since we have absolutely no preconceived ideas about how this is going to map out for our boy, and Dr. L didn't give us any expections

 

We are at GTUH for DS13s PEX and yesterday was 'day 1'. About an hour after he was done the itching sensation he has all his waking moments (moves all over body, considered a tic) amped up to insane intensity and he started to jerk and twitch, which I havent seen him do for months and months. Now he's super worried he's going to get worse and worse with the next 2 treatments to come. He woke at 3AM w/ vital signs check and was just sobbing he feels so bad, stess level is soaring and anxieties ramping of course too.

 

Has anyone else seen a child react similarly w/ PEX? He has been diagnosed w/ Lyme and/or coinfections due to a bullseye rash following an unknown bug bite 2 months pre-PANDAS crash, but neg on CDC and IgenX tests, but bands found seem to indicate he's 'had' the infection...almost 5 months on Klinhardts Lyme protocol and 7 months on minocycline per Dr.T are only treatments so far but we do have a LLND on our team.

Thank you for anyone's thoughts, means a lot to us.

[rowingmom]

Have you tested for, or are you currently treating any coinfections? Treating for pure lyme will probably not be sufficient in most cases. Lyme usually travels with coinfections.

Edited December 11, 2013 by rowingmom

[DsMom]

We have tested for Lyme and coinfections for the last 2 years...in fact Infectious Disease doc just left our room after telling us that all the testing he's gone through are negative, whicch of course we knew, and that he's been treated by enough ABX now to effectively 'treat' any Lyme/Co-infections he might have had, but this doc, as with almost all the other MDs doesn't feel he ever had any....we did Klinghardt's regime as well... the docs are either in one camp or the other.

[sf_mom]

I am sorry you are experiencing a rough patch with treatment and remain hopeful you will make some gains after PEX is fully complete.

 

When you are post PEX (several months) and if he is still worse or not improved as hoped you might consider testing with Advanced Labs for Lyme. Its a culture test, 'not antibody' and will provide an actual picture of the spirochete if positive. Many with questionable antibody results, told the Lyme was gone or it was a past infection have tested this way to confirm one way or the other. Our LLMD uses the test to confirm if there is a relapse occurring.

 

I have chronic Lyme et al, all three of our children have gestational Lyme. One child is positive for everything including co-infections. One child is positive via antigen urine testing 'DOT BLOT' but serologically negative via Igenex test. One child is serologically negative for everything but has other indications of chronic infections/viruses: Low white/red Blood cell count, high Lymphocytes, inflammation markers indicating infection, etc This particular child is also very immune weak and has deficiencies in all her subclasses inclusive of IgAs of 21. She is unable to mount an antibody response and probably why results continue to remain negative but has improved tremendously from treatment. Her twin brother is the one who is positive for everything and has a much healthier immune response.

 

We are in our fourth year of treatment and doing tremendously better but all of us still have a handful of symptoms and the Lyme is not gone. Based on your son's history/symptoms and comparing our own recovery it would have been extremely difficult to achieve full recovery from chronic Lyme within a seven month period. Also a a single use antibiotic is not standard when treating..... is your LLMD directing antibiotics currently?

Edited December 11, 2013 by sf_mom

[DsMom]

No, no ABX per LLMD. She's been more concerned with his mold and chem sensitivity test results as they were sky high, so we detoxes him over the summer and his new labs show him significantly improved. Per the IgenX data she wasn't even sure if the Lyme was an issue for him 'now' but feels certain he's 'had' it in the past. She wanted to see how PEX goes and if no improvements dive into a Lyme blasting regime. We had treated for parasites via Kilinghardt and he's not a wimp on that front, so I know that's not impacting him, if it ever was. Only ABX right now is to keep Strep at bay....

he didn't jerk or twitch even a quarter as much after day 2s treatment. Today is 3rd and final day, he's still got intensified itching sensations, but he's stressed out so maybe that's a factor...it's such a guessing game, I just hate it!

[sf_mom]

Glad to hear he is better today and hopefully his 3rd round will provide even further gains. I have heard PEX being helpful for those infected with Babesia, makes sense since its a inner red blood cell parasite.

 

It also sounds like the order of treatment has been good starting with detoxing mold. I recently heard Klinghardt is now recommending a 1 1/2 years treatment timeframe for parasite so something you might want to revisit in the future. As you probably know the itchiness is definitely a symptom of Lyme.

 

I highly recommend the Advanced Labs Lyme culture down the road. Lyme may not be predominate issue (mold can be just as horrific) but you will want to know if its still there.