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OK time for some hand holding….


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Ds started protocol last Thursday with bicillian shot..2/3

Then on Friday dropped zith from 500 to 250 but added amox clav er 1000mg bid and diflucan 100

6pm said he had pain in the center of his chest , area bout size of grape fruit ..lasted about an hour2/4

Didn’t think I saw anything..but got reports that his tics were bad at bowling alley on sat 2/5

Sunday in morning said his right knee aches and is sore when moving it forward not backward....did notice a screech I haven’t heard in months…as day went on, the main tic he has left was really up…then setted down in late eveing …..but his overall mood was sooooo cooperative 2/6

2/7 Mon status-quo

2/8 tues …talks about the great sleep he had,,,but has overall tired feeling that I have begun to realize he has almost always had…(I just thought it was allergy related and not being able to breath…but has been on allergy shots for 4 months and doing great!)

At night said a little groin pain on left side.

2/9 ithink tics are picking up..had slight accident but wakes up early enough to only have to change his pants

2/10 seems great in moringing…after school, picking up all different kinds of tics and some olds ones

I note the pollen count is up to 7 from 0…mind you pollen down here gets to 3000-5000 at height

2/11..ds walks in door from school..mom my tics were really bad today…about 3xs worse…..

Some popping sounds like a cork..head nods,twists,,,stomping..i think I noticed a slight blink which I haven’t seen since he was 5…

 

UNDERSTAND…I can be cynical of myself…so I doubt the decsions I make too….am I nuts doing this to my ds….but why would there be dead dna in his urine if it weren’t live in him recently….

I think this site/blog explains dot blot well

http://lymebusters.p...lay&thread=1365

 

Ds was about 85-95%...so I guess we are about 60-70% now…it hard to complain when I know some have it so bad…but it is hard to watch this when it was just sooooo good…

So..are all these little things and the tics herx…

 

Could it be yeast ?...ds is only 85lbs and that’s a lot of abx…I do give 4 tbs of bentonite and milk thistl or burbur after school……give second round of abx about6:30-7..so I can give sach and 50 billion other probis for bed time..

 

Could I be creating die off because of timing and giving sach at night and the diflucan in the am……and he’s not herxing at all its just too much of other things???

 

Asked doc about amox dose..shouldn’t it be more like 875 bid…..

Doc thinks I should rais zith back to 500mg.

 

No stomach aches, bloating..still seems more on the constipated side…but I still think you can have yeast and he has had it w/o all the normal symptoms..

 

Any thoughts, observations, hand holding, very welcomed /needed!

 

Maybe is should have just stayed with what we were doing on the zith at 500mg..we were slowly trending better..after a major leap forward with the zith/cleanse combo???

Edited by Fixit
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They will be worse but then better than you ever imagined, I promise. Our son was also hitting many 100% days prior to starting Lyme protocol. It took 9 weeks for the TICs to settle down and we revisited every single TIC her ever had plus some. You really have to walk through the herxing storm for them to get better or the Lyme will linger. It is truly worse before better concept.

 

We again achieved many 100% days with no TICS for a couple months after things settled from new Lyme protocol. We recently added an additional antibiotic to his regimen Jan 2nd and he started up with a mild cough which has ramped up to non-stop coughing in the afternoons in that last two days. We are going after bartonella and infections in the brain. It is hard to watch and hear..... but I know it will stop and he'll be better than ever. I may take a two months, three months.... six months but I'll definitely be posting about it when its gone. The cough was his first PANDAS symptom and hopefully it will be his last symptom.

 

Hang in there.....

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I am sorry about the doubting. It is so hard not to do, impossible probably. The yeast question is the hardest for me. I'm just hoping that what we are doing is holding the yeast at bay. I hope you see improvement soon so you will have confidence in what you are doing. I agree with Nancy, we will get there one day. I increase my transfer factor tomorrow and it just barely calmed down. I dread increasing it and having my symptoms increase. I feel the same about dd8's flagyl we have to start in 2 weeks.

 

Now I'm just rambling. Just wanted to give you a little support too. :)

 

Susan

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Here's a question...

ds needs to take diflucan with amox er...because we realized that the joint pain was from all the times we useed it in the past ..it now is just too much wipes out his gut so much that the yeast?? is what the dan said, is getting in the joints causing the pain ..not a reaction to the amox....so when we did amox er again last May we did the whole month no joint pain...

but is he really not reactiing to the amox? because of all the years of prior use..plus never using probis till the last couple of years....

ds gets allergy shots..1 item listed is a single mold..but because of that they cover all of them in the shots.....

could...even though the diflucan covers the yeast ...is he having a mold reaction coursing through his body as i am pouring it into him bid...

 

does any of that make sense...maybe not a reaction with the stomach..but instead of pollens raising his tics...

could an abx allergic reaction be the same thing...like a food allergy...

sorry this is hard for me...

told you i don't think i can handle herxing...ready to retreat....trying to hold..

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I am sorry guys but I had to laugh a little when I read all of this moaning going on! It really stinks doesn't it? My daughter was about 90% last spring before we started lyme treatment. She had what I called firework tics throughout the summer. I was dying! She really is so much better now but it is still bumpy at times. Hang in there and try to keep a sense of humor about the whole thing. Maybe I have a little dark humor inside but it gets me through the rough times. It will get better and while I believe yeast always plays a role during antibiotic use, you guys are experiencing real herxing. It is miserable but it is a good sign. What doesn't kill you makes your stronger...or drives you to drink! :P

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Fixit, you are right about the amox. If your son has as actual allergy to mold, he will react to amox. The penicillin base abx are mold based. It would be like reacting to any kind of allergy. May need to ask for a cephalosporin. The allergies may be playing a small part in this as well. It can take many many months before the shots are helpful. Sounds like you have more than a few things going on.

 

Take one thing at a time. You are doing everything to control yeast the best you can right now. You have no control on the allergies, so that is a wait and see. The one variable you have is the antibiotics.

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the screeches are back pretty good again...thought i heard some yesterday...we have not had them in many months..

vocals stopped completely or at least to 99.9% when i did parasite cleanse that also treats candida in december...and again we were 85-95% or even better at times..

 

do you think it could be clostridia with all those abx and so high on the aug

again, been doing milk thistle or bubur once a day and bentonite once a day...50-100 billion probis split through the day..

i think it could be clostridia??!?!..when ever we treated with vanco or clyndamicin they went away each time

 

i have message into docs about allergy and the abx usage...

 

no other alements today...when i woke him at 7 to give meds and stay on sched..he said his throat hurt..but it was gone by 9-10..could be dry air..or i have a cold and just today my ear started to hurt...i don't think i've ever had an ear infection before???

and no i don't think it is a flair do to me....been too busy to be near him .blah blah

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fixit, in the past when your son had clostrida, did he have other GI symptoms? Lose bowel movements or pain? Is there change in color to his stool? I am not really familiar with clostrida so forgive me if these are stupid questions. Does he have any of the other classic symptoms of clostrida right now...other than the increase in tics?

 

 

 

the screeches are back pretty good again...thought i heard some yesterday...we have not had them in many months..

vocals stopped completely or at least to 99.9% when i did parasite cleanse that also treats candida in december...and again we were 85-95% or even better at times..

 

do you think it could be clostridia with all those abx and so high on the aug

again, been doing milk thistle or bubur once a day and bentonite once a day...50-100 billion probis split through the day..

i think it could be clostridia??!?!..when ever we treated with vanco or clyndamicin they went away each time

 

i have message into docs about allergy and the abx usage...

 

no other alements today...when i woke him at 7 to give meds and stay on sched..he said his throat hurt..but it was gone by 9-10..could be dry air..or i have a cold and just today my ear started to hurt...i don't think i've ever had an ear infection before???

and no i don't think it is a flair do to me....been too busy to be near him .blah blah

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fixit, in the past when your son had clostrida, did he have other GI symptoms? Lose bowel movements or pain? Is there change in color to his stool? I am not really familiar with clostrida so forgive me if these are stupid questions. Does he have any of the other classic symptoms of clostrida right now...other than the increase in tics?

 

 

 

the screeches are back pretty good again...thought i heard some yesterday...we have not had them in many months..

vocals stopped completely or at least to 99.9% when i did parasite cleanse that also treats candida in december...and again we were 85-95% or even better at times..

 

do you think it could be clostridia with all those abx and so high on the aug

again, been doing milk thistle or bubur once a day and bentonite once a day...50-100 billion probis split through the day..

i think it could be clostridia??!?!..when ever we treated with vanco or clyndamicin they went away each time

 

i have message into docs about allergy and the abx usage...

 

no other alements today...when i woke him at 7 to give meds and stay on sched..he said his throat hurt..but it was gone by 9-10..could be dry air..or i have a cold and just today my ear started to hurt...i don't think i've ever had an ear infection before???

and no i don't think it is a flair do to me....been too busy to be near him .blah blah

 

No typical symptoms of clostridia...just increase in tics..and response to specific abx...

i am going to call our dan on monday just to confirm....i don't think you have to have alot of clostridia..some may be more reactive or sensitive to it...by day 12 of 14 day course of vanco screeches would be gone(2x's)...and it was quicker with the clyndamicin

i will have to ask doc how we came up the 1st dx..i believe he had other markers that indicated it....and what worked the first time we figured would work again

 

Ds always runs constipated..even with all the abx, when he was at 9000mg of vit C..higher doses of Mag.....Now that i think of it..Cant' constipation be as sign of it too???

I've been checking his movements the last month or so, checking for parasties and such..haven't checked last couple of days, but if i miss i ask him...he just told me he had 3 movements yesterday, all normal...but typically only has 1 a day

 

the other thing is..why is the augmentin so high 1000mg bid..he is only 85 lbs...i thnk sammy was on 875 bid when he was 12 and 100lb something...right?

another kid seeing doc b in md..who is only about 8 lbs less, is only on 500 1x a day????

i think it just may be too much for his system to process...

 

Anyway...i really want it to be HERXING...if i felt more confident that it is, he and i can deal with it...but from past experiences....i have some doubts and questions..

i think the scarey part is..we are all trail blazers with pandas/pitands..now trail blazers with this...i just wish there were more ahead of me on this trail

 

Momo..i really appreciate the support and any input...

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Silly question but what is the best way to test for mold allergies? I have a lab slip for blood work but I'm not sure if it's for a specific type of mold only.

 

Fixit, you are right about the amox. If your son has as actual allergy to mold, he will react to amox. The penicillin base abx are mold based. It would be like reacting to any kind of allergy. May need to ask for a cephalosporin. The allergies may be playing a small part in this as well. It can take many many months before the shots are helpful. Sounds like you have more than a few things going on.

 

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I can feel for your situation. I have one child that started treatment in October and did get worse before we saw improvement. He is now doing much better! My other son is just such a mess right now that he won't even consider treatment. I need to get him on board but I live in fear of him getting worse before better because there is no room for worse here. I guess you just need to hold on to what some of the other mother's here report as far as how well their children are now doing after going through the downturn. Hang in there!!!!

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MORE hand holding please!!!!!

DS screeches.have hit an even higher level..his motors are up too..but those are nothing compared to the lady being stabbed every 30 seconds!!!

Called doc, we are off azith, amox and diflucan

 

going to start vanco and clyndamicyn....

idk..my poor boy..we were so good....

has anyone here on the lymes board or another lymes parent who doesn't post, had to deal with screeches, gutteral screams.....did they go away with lyme treatment

He just asked me to come sit by him and read!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I jump out of my skin with each curdle and it litterally hurts me physically when he does it…it has to be hurting his ears too!!!….no one would be able to believe the pitch and consistancy….

This can’t be herxing…….i am so tired….i don’t want to do this anymore….

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