sf_mom Posted February 17, 2011 Report Share Posted February 17, 2011 I am so sorry but I truly have been there and I do believe its a herx. You can slow the process down with less antibiotics but you do have to walk through the herxing storm at some point. What kind of detox is he on currently? -Wendy Link to comment Share on other sites More sharing options...
Fixit Posted February 17, 2011 Author Report Share Posted February 17, 2011 My head is pounding...he says his neck and throat hurt..no surprise there. I sure hope its not..following info part of that wish I called doc b office in ct and they said he checked out fine for penicillan??and he checked out fine on the other molds...and there should be no cross action with it..i did not talk to dr specifically..my llmd said no cross action..and again it was only 1 mold that showed up... i am thinking, as i look at my notes and the 3 times he did vanco..it looks like disbiosis mostly..comparing why i started vanco its success..why i needed it again and again... if it's not the gut..and he can't take xyz abx's and having a bad reaction to bicillan..we &^%$&!! I would like to see some other traditional herx markers come in...though i vaguely remember some people here saying something to the effect that that never happened for them...but i don't remember if they never herxed at all and just got better...or herxed(in their fashion..ie more mood liablity, more light sentive, more of the neuro stuff and then got better.... and if this is a herx..maybe its just to severe...its brutal...and we need to back off.... i just have to get the vocals gone...and they take a long time...in our experience Link to comment Share on other sites More sharing options...
Fixit Posted February 17, 2011 Author Report Share Posted February 17, 2011 I am so sorry but I truly have been there and I do believe its a herx. You can slow the process down with less antibiotics but you do have to walk through the herxing storm at some point. What kind of detox is he on currently? -Wendy Did your son screech/scream?. i've upped the probi's to a solid 200-300billion i can only bentonite after school..and that's about 2-3 oz not quite 1/2 cup... milk thistle or burbur 1x a day..i switch. i give him triphala at night...super gentle herb...to help move his bowels..he is always on the constipated side..even though he goes daily..i want to make sure that continues and maybe move things a little more and easier for the system doc does have some concerns he is re-uptaking some of the toxins, die off, by products, and unprocessed anything he also did add cholestyramine ...just read it can be used to treat clostridia...but it is a binder...i might have to call doc back...we dont' need binding?? Wendy and pHila thanks for ideas and support...keep it coming!!! Link to comment Share on other sites More sharing options...
Fixit Posted February 25, 2011 Author Report Share Posted February 25, 2011 Need some help... ds home from school..first words in car...mom they're an 8...what happens when it gets to 10....i said "i don't know son" his vocals are constant...litterally...screech, suck, cough, click..head nod, shake, stomp, suck, spit..kkkk, nod, shake, screech...cough, clear.... recent info.... we are up to 6 drops samento..i stayed at 3 for 2 days then stayed at 5 for 2 days... vanco 125 am clyndamicyin 75 mg bid detox after school..burbur or clay...thistle in am or pm.... triphala to move bowels.. yesterday exhauted after school..took 2 hour nap.. at bed gave 2.5 mg mel back to bed at 9pm he said a coule days ago he has a loose tooth..not very loose though... said neck hurts, i gave 2 ibuprofen.. hopeing doc calls back... should i back off of samento...i wont give tonight or tommorrow... thinking restart on sunday at 1 or 3 drops... his b-day party tomorrow..another shi%$$%^ one...just want him stable enough to enjoy.. today is day 9 off of protocal... day 8 vanco..though concerned still not high enough..and ususlly i didn't remission of vocals till day 12 or about 2 weeks. day 7 of samento.... was going to get next bicillian shot on tuesday...maybe should wait another week till more stable...waiting won't back track us right...just one more week...... i heard some times you have to back off or slow down a little..... i also heard the clindamycin is used sometimes to treat lymes any thoughts Link to comment Share on other sites More sharing options...
JuliaFaith Posted February 25, 2011 Report Share Posted February 25, 2011 Did you say that the dr. had been called? I've heard that a sore neck can follow strep after it has been going for a while. Link to comment Share on other sites More sharing options...
Fixit Posted February 25, 2011 Author Report Share Posted February 25, 2011 Did you say that the dr. had been called? I've heard that a sore neck can follow strep after it has been going for a while. i asked him if he feels sick..wont let hubby look at throat...he says its from the head nodding/shaking..pretty severe Link to comment Share on other sites More sharing options...
philamom Posted February 26, 2011 Report Share Posted February 26, 2011 fixit- advil or alleve might work better than motrin. I'm no expert on the detox, but maybe back down some on the Samento. I read here it can be very powerful. I hope he can still enjoy his party some! I'm thinking of you!! Link to comment Share on other sites More sharing options...
Fixit Posted February 26, 2011 Author Report Share Posted February 26, 2011 fixit- advil or alleve might work better than motrin. I'm no expert on the detox, but maybe back down some on the Samento. I read here it can be very powerful. I hope he can still enjoy his party some! I'm thinking of you!! thanks phila..ok will give more alleve...no samento till sunday...maybe start back there at 3 drops bid.... thanks again..his b=day is monday... Link to comment Share on other sites More sharing options...
momofgirls Posted February 26, 2011 Report Share Posted February 26, 2011 Fixit I would stop the samento untill he is stable because you don't know what is causing the increase in tics. The samento is very strong but if he has c diff you want to know that too. Maybe wait till you get your labs back on the clostridia before starting lyme stuff. Try giving lots of bentonite like 2 cups tonight! Do it all weekend if you can. Keep us posted. fixit- advil or alleve might work better than motrin. I'm no expert on the detox, but maybe back down some on the Samento. I read here it can be very powerful. I hope he can still enjoy his party some! I'm thinking of you!! thanks phila..ok will give more alleve...no samento till sunday...maybe start back there at 3 drops bid.... thanks again..his b=day is monday... Link to comment Share on other sites More sharing options...
Fixit Posted February 28, 2011 Author Report Share Posted February 28, 2011 what to do... doc b did not call back... everything is still a 7..... i scheduled allergy shots for turesday..was going to bet bicillan too.. but i need at least 24 hours for pharmacy to order...so that would have to be today and soon... we stopped protocal 12 days ago. started vanco 11 days ago..usuall by day 12 i would see a drastic betterment/remittance..still afraid that dose was only 125 daily...other times 125 tid... labs were still not back...hate to call to pay for another consult when labs will hopefully be in tuesday(I PRAY)...... (stopped samento friday..i am afraid i am letting lymes gain ground or build a resistance) do i call scott anyway and up dose...do i wait another day or 2 to see if it is definitley some gut issues...plus we'll be in nj to see him on thurs..as i need to have all my docs in pocket as i now have 3 pandasSOT children... do i call beals again, to ask about shot... or just skip it on our own ...till next week.. not trying to be nag...but his is not your typical muscle pain response and i feel like i need to understan more....and we are new into treatment and may need more handholding..each call was not more than 5 minutes??? we leave on wed to see some of our panda docs to stay on their list when we need help...wont be back till next monday, so tuesday would be the next earlist time to get bicilian)... when doc b saw my ds...(i think and i would have felt the same)..that he was in a good condtion(remarkabley really) to push a little..we have since talked to him once a week..but not last week...our phone consult is set for wednesday..(i'll just have arrived at my brothers in NJ to do consult from there... waiting for myself would not be an issue(there are several things i have not followed through on for me for over the last coulpe of years, that i need to get on.) this is my kid...this is a kid who has been through so much...this is a kid who was so much better 4 weeks ago.. trying to get 504..it's really effecting his school work, per several emials with the teacher... looked at that semi-loose tooth last night..called dentist today and getting it pulled as it is growing over the baby tooth.. Link to comment Share on other sites More sharing options...
dcmom Posted February 28, 2011 Report Share Posted February 28, 2011 Fixit ugh- I so feel your pain. The only thing I can add is that I have 2 pandas kids- and EVERYTIME one of them has a loose tooth it is a problem, pandas wise. Sometimes we have seen the issues resolve, other times we have used steroids to resolve. Of course now that they have possible Lyme- it makes things more complicated. I hope you get relief soon! Link to comment Share on other sites More sharing options...
Fixit Posted March 1, 2011 Author Report Share Posted March 1, 2011 could not take it any longer... ds has been screeching in the night the last couple...1 am 3 am...not sure if need to screech wakes him..if screeching in sleep..or just tossiling and then screeches need to come, this happened last time too diffineitly yeast and c.diff by standards of 2003..but the parameters were raise as many people use abx now... but still cusping c. diff anyway.... beals only had him on 125 daily..(in past did vanco 125 tid).basiscly the concern is it's not high enough and vanco will become ineffective as i learns to deal with it...so we are upping to 250 tid...to catch up...as that test was 2 weeks ago.. and he is now hitting himself in the head.. Link to comment Share on other sites More sharing options...
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