What about non/low/slow herxing

[Bill]

Son has been in treatment for lyme for last six months. In the beginning, pretty sure we saw the ups/downs with tindamax on the weekends but we have never seen dramatic "herxing" otherwise. Even the weekend tindamax reaction seems like a dream. We're not giving him tindamax this weekend just to see if there is a difference.

 

We have seen long slow progression of OCD and of course the daily ups/downs but nothing dramatic. I'm charting but nothing jumping out at me. No ABX introduction has resulted in anything significant. The biggest thing I've seen is that his poor handwriting became illegible. Since he won't consent to hand writing testing often, my points of reference are a month apart.

 

Pretty confident of the lyme plus coinfections as he was positive via Igenex for BB and bartonella. We will test for babesia in the next two weeks.

 

Anyone else with a child or self who does not show dramatic changes? I'd kinda like to see some severe herxing to gain confidence in the treatment. (And to those living through severe herxing - I'll apologize ahead of time as I know it's traumatic.)

 

bill

[justinekno]

We had some herxing the first couple of weeks of treatment, fevers, body aches, but that was 5 months ago and we haven't had that kind of herxing since. We have seen gradual improvement in mood, focus, and schoolwork. Our LLMD believes in slow and steady. Although I will add that my son has had many different rashes with the antibiotic use which are believed to be Bartonella. We came to a standstill (and maybe some regression) about three weeks ago and decided to stop antibiotics and go the herb route. Our dr told of us if we see hexing we should call him because that means it's too much of the herbs. Knock on wood - we have seen more improvement and no herxing. I think the important thing is to see some gains. Have you spoken to your dr about possibly changing the antibiotic?

Edited April 8, 2011 by justinekno

[sf_mom]

Bill: If you are concerned if its still a herx response or not... You can suspend antibiotics for 48 hours and see if he improves. If he does then I would either start back up and focus on detox (as much as you possibly can). Or you can always back down on some of the antibiotics to give him a break. Of course after consulting with your Dr.

 

Remember it is the poop and pee of bacteria (endo/exotoxin) = disease and symptoms. You've got to help him eliminate.... If he is overloaded with toxins his body will just send them back out to other organs than liver for cleansing. When you add a bile binder it help to draw the toxins into his stool for elimination.

 

-Wendy

[MichaelTampa]

Is his total lyme treatment just tindamax on weekends? Are you seeing any progress after 6 months, or really no difference?

[Bill]

Is his total lyme treatment just tindamax on weekends? Are you seeing any progress after 6 months, or really no difference?

 

Oh no. His treatment is a lot more than tindamax. Tindamax is the only thing that we thought produced the closest thing we see to a herx. I can't tell if he's better this weekend or not without it.

 

We see "progress" but sometimes wonder if the progress is real or just his symptoms changing. For example, he has dystonia which I am almost positive is the result of this stuff. One foot/ankle has gotten better since the start of treatment as has his eyes, appetite, math; but OCD and 'tude (what we call attitude) and other dystonia related symptoms are either worse or no change. Even before treatment, things changed so it is hard for me to accept that the positives are really positive. How do I really know what to attribute to treatment or just random changes. Progress??? That's what's bothering me. Not sure we really see progress.

 

Adding some things based on SFMom's insight. Will try to hit detox harder. He went off his probiotics for a couple of weeks but now is admitting that perhaps he was better with them. Problem w/o is as you can guess. With probiotics and he gets constipation on a low dose. He's now agreed and is taking some bentonite clay and adding fiber. I'm keeping the doses low to not overwhelm him though. Just ordered CholestePure for detox; see what happens. Also ordered magnesium per Burrascano's guidelines to see if that will help with his tics and muscle "jumpiness."

 

Hoping SFMom is right and perhaps our not seeing reaction to ABX is because his body is overwhelmed as is. Until we remove some junk..........

 

This will sound strange but I really just want him to react like others here so that I know he is on the right course finally. Until then, I was hoping others would say "no solid herxing here" but still worked out in the end.

 

Thanks to all. Just need some reassurance......(Wendy - I promise to take some deep breaths and continue waiting.)

 

bill

[sf_mom]

Thanks Bill.

 

I've been trying to temper timelines (with everyone) so you can hunker down and be extremely happy when there is improvement. With herxing you never get improvement with the symptom you hoped i.e OCD and sometimes its with something that seemed irrelevant or a non issue to the bigger picture, they trade symptoms, there are flair's of symptoms/toxins dumps and they develop new symptoms with antibiotic rotations..... its awful to watch as a parent. It can be slow especially if you have IgG deficiencies of any type..... specifically IgA one Dr. mentioned to parent. We all want to fix it now and average time frame is 2 plus years. So, you are only potentially a quarter way into treatment. BUT, eventually all symptoms do fade.

 

If Saving Sammy (4 years, antibiotics only, PANDAS), Ed from the Canadian video (3 years), 15 year old girl from my Dr. office (3 years).... etc. Your son can too. AND, I just want you to know there are others with similar mild improvements in six months with some worse OCD and not posting to the forum. They too are trying to push through so you are not alone.

 

This has been true life lesson in fortitude/shear fear/compassion and a lot of prayers for our family. I'm exhausted and sometimes due to herx not feeling well myself but quickly realize there is no alternative and we have keep to going and eek out a life in all of it.

 

One more thing.... if you are not successful with getting in regular detox. I understand monthly IV Glutathione is very helpful for detox. Dr. Horowitz recommends. You could also try Transfer Factor to help with Natural Killer Cells/Lipids - Nutritional Resources

 

I've attached Garth Nicholson's talk about lipids from 2010 ILADS conference.

 

Edited April 9, 2011 by SF Mom

[JuliaFaith]

My ds has continually been a bit different than a lot of kids on here so here is his experience.

 

Once diagnosed with lyme was just on herbal remedies for 3 mos. with very little improvement. Mostly just increase in energy that we notice. His symptoms for the last year have been flu-like so that is our starting point. He did have some small flare-ups in the middle of the night for 2 hours then 1 hr.

 

Was justed started on abx and a cocktail that is herbal for babesia and his flare-ups went from 5 days, to 4 days, to 3 days, to 2 days, and then we had to stop the 'cocktail' so he could get tonsils out. His ND said that getting the tonsils out will speed up healing for him. When he got tonsils out, his Dr. had the surgeon do a nasal swab for MARCONS, coagulase negative staph, and mold growth. Very inexpensive way to see if there are some things going on there. Apparently, these develop the biofilm (i believe) and are difficult to get rid of by abx alone. My son has never had strep or sinus problems but at this point we have to look at as much as possible to get him well again (it has been a year).

 

The ND is also having us look into mold. We do not know of any in our house but did the ERMI testing recommended by Dr. Shoemaker (author Mold Warrior). It was $275 and uses DNA testing which is very easy to do yourself. The results are based on an average amount of mold in homes across the US (I believe). My son keeps testing for mold in the art testing so we are pursuing it just to make sure it is not an issue in our house. Reading about mold has been an eye opener, at best. The symptoms can be the same as lyme and sometimes people are diagnosed lyme when it is actually mold. You will have to read one of his books to understand all of this (easy way to rule it out anyway ).

 

Best wishes on treatment and hope some of this helps.

Edited April 10, 2011 by JuliaFaith