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KayJ
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Posted: Fri Aug 8th, 2008 05:32 |
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Hi
I just joined the group. I have a 10 year old son with the following profile which I think fits the Th1 disease . I am planning to start him on MP very soon and will be talking to his Pediatrician tomorrow about the D-Metabolite tests and the Phase I. He has so far agreed to help.
Do we still need to do the 1,25D test given the following ?
Vit D, 25-OH Total 5 Ref Range (20-100) (This was taken 1 year ago)
My son's history/diagnoses:
Born 3 weeks early and given IV penicillin as the water broke.
High fever for 2 weeks after 4th month vaccines then turned red after a Rocephin shot and projectile vomiting after Augmentin. Diagnosed with Kawasaki Syndrome. Was a reaction to Rocephin. Developed light sensitivity and his first word at 5 months was 'light'.
Regressive Autism at 15 months
Tested positive for Bb on Igenex WB for both IgG and IgM (Bowen showed 1:64 with L shaped Bb and I had 1:128 with same L shaped Bb), high IgG for bartonella and babesia WA1 (test done when he was 5 years old). Got bad herx with high fevers and neuro symptoms getting worse on Zithromax, Bicillin (though was very good the first week of bicillin), Mepron etc.
Had the same redness (same symptoms as high fever, rash under the skin, red eyes, cracked bloody lips etc) as the 4th month illness when bactrim/Rifampin was given for bartonella. Stopped after a month as the neutrophils became very low, with low WBC etc. Has the tendency to have low neutrophils on medications. Developed light sensitivity.
Diagnosed with HPylori later which still doesn't seem to go away even after many rounds of Abx.
Became worse on LDN developing facial tics.
Tested positive for IBD markers and was diagnosed with Crohn's early this year. Pillcam showed several aphthous ulcers in the duodenum and ileum with chronic gastritis. Did very badly on Methylprednisolone shots. Developed new tics, breathing problems , etc.
Has low IgG and did poorly on IVIG, so I've stopped it for now.
Had the following Cytokine Profile in Jan 2008.
IL-2 91 ref range (0-5)
IL-2 receptor 58 ref range (0-1553)
IL-12 190 ref range (0-9)
Interferon Gamma 48 ref range (0-9)
IL-4 16 ref range (0-5)
IL-5 45 ref range (0-8)
IL-10 30 ref range (0-10)
IL-13 316 ref range (0-152)
IL-1beta 704 ref range (0-242)
IL-6 15 ref range (0-5)
IL-8 5 ref range (0-5)
TNF-alpha 16 ref range (0-31)
Current symptoms: Inability to put on weight, dry eyes with blepharitis, cracked bloody lips, light/sun sensitivity, tics, extreme sensitivities to foods and environment, running low grade fever, lots of GI problems, bladder problems etc besides the autism with terrible anxiety, some OCD, lots of vision tracking issues etc.
I considered MP when my son was 7, but was discouraged by docs due to age and use of mino.
I have CFS, MCS symptoms with 1:128 L-shaped Bb on Bowen and my husband has 1:32 (cyst form) and both IgG and IgM positive on WB and high IgG for bartonella.
Any input would be greatly appreciated.
Thanks so much
J
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10 year old son with Crohn's, lyme and autism diagnosis and had high Th1 cytokines. Started Benicar Nov 9th 2008 at 20mg 6 times a day
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Julia
Advocate (on leave)
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Posted: Fri Aug 8th, 2008 10:37 |
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Hi KayJ,
I hope you and your husband are planning to do the MP along with your son?
It's necessary to have an up-to-date 25-D test, and it's certainly useful to have the 1,25-D tested. But to one parent who was having difficulties getting a valid 1,25-D test done, a medical moderator wrote: The blood tests are necessary when a doctor is hesitant about a diagnosis of Th1 inflammation. And they provide a baseline to compare against future levels to provide proof of the effectiveness of the MP. But the real proof is in the symptoms. The symptoms referred to were those sparked by a therapeutic probe: if the child reacts to Benicar, it shows there is Th1 inflammation.
Children on the MP includes information for parents who have questions about using the Marshall Protocol with their children.
CHILDREN & MP - information and links - includes advice on dosing of Benicar and minocycline.
Can children be treated with the Marshall Protocol?
Children getting on MP - persuading your doctor.
Hope this helps. Please ask any further questions here at your own personal thread.
Julia 
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Always consult a physician
Essential Info; FAQ; Julia's story
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KayJ
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Posted: Sun Aug 10th, 2008 00:37 |
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Thanks so much Julia, for your response. My husband and I plan to eventually go on the MP.
The links you provided don't work except the 'theraputic probe' and 'Can children go on MP'. Please help.
I will be running the D metabolites soon and will post when I have the results.
Thanks again
J
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10 year old son with Crohn's, lyme and autism diagnosis and had high Th1 cytokines. Started Benicar Nov 9th 2008 at 20mg 6 times a day
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Aussie Barb
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Posted: Sun Aug 10th, 2008 00:57 |
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Thank you Kay
There has been a change to the site and the Information from those links is now all provided in the FAQ 'Can children go on MP'. Thanks, Barb ....
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KayJ
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Posted: Mon Nov 10th, 2008 23:26 |
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Hi
We just started our 10 year old son on Benicar (20mg every 6 hours) yesterday. He was extremely happy (usually an irritable kid), calm and was just unbelievable for about 8 hours after the start of the first dose. Then he went back to his usual self and today more irritable and having verbal stims and some tics  Is this normal ? Doing well at first and then doing poorly ?
Also, how do I find an MP doc for myself ? My son's pediatrician is helping my son with MP.
Thanks so much
J
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10 year old son with Crohn's, lyme and autism diagnosis and had high Th1 cytokines. Started Benicar Nov 9th 2008 at 20mg 6 times a day
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Rico
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Posted: Tue Nov 11th, 2008 00:08 |
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J, I felt better than I had in years/decades after I took my first Olmesartan pill. After about a week, things had returned to where they had been. I believe it has to do with the hormone levels adjusting. However, things started to improve as the months went on. You just have to remain patient as things should gradually improve with time.
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Essential Info; FAQ; ABC's of MP; Side Topics; Perspectives
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natalie17
Advocate
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Posted: Tue Nov 11th, 2008 00:11 |
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Hi J,
In I just started Benicar. Why do I feel worse?
.. you will see it says;
About 25% of folks experience immediate symptomatic relief when they begin the Benicar blockade. About 25% feel no different. The other 50% will experience some adjustment symptoms.
In my experience of reading the boards I have definitely read of people feeling better at first then feeling worse than they did before they started, so it's not unusual. If you are concerned, speak to your son's Doctor.
You can request for a list of Doctor's in your area here;
REQUEST FOR DOCTORS LIST (click here)
Alternatively, you can try to get a current Doctor on board with you. If you;d like to do this, let us know and we will help you out with information.
Take care,
Natalie
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.| ABCofMP|My Story
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KayJ
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Posted: Tue Nov 11th, 2008 00:16 |
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Thanks so much Rico. That really helps to know. I will be patient.
J
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10 year old son with Crohn's, lyme and autism diagnosis and had high Th1 cytokines. Started Benicar Nov 9th 2008 at 20mg 6 times a day
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KayJ
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Posted: Tue Nov 11th, 2008 00:43 |
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Thanks a lot Natalie. I appreciate all the info. Unfortunately I don't have an 'understanding' doctor so need to find one. But my son's pediatrician is great and is learning MP and helping us.
J
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10 year old son with Crohn's, lyme and autism diagnosis and had high Th1 cytokines. Started Benicar Nov 9th 2008 at 20mg 6 times a day
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alexmom
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Posted: Sun Dec 14th, 2008 15:12 |
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| hi, my name is cheryl, i read your post on your child with autism and lyme. my son also has autism and lyme and is 8 years old. they both are almost the same age. from your last post you started benicar. i am suppose to start this as well, as my son actually does much better on IV rocephin and currently doing IVIG with no negative or postive changes currently. i am worried how he will handle benicar at a young age and would love to speak with you considering your son to is also young and doing the same protocol. how are things going so far?? thanks cheryl
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KayJ
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Posted: Tue Dec 16th, 2008 01:47 |
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Hi Cheryl,
Though I saw wonderful things on the very first day of benicar, I haven't seen the same things again and it's been a month on Benicar and two weeks of mino. But he has been much happier than before. I haven't seen ANY bad negative side effects from Benicar either. My son also has Crohn's so it's been tricky as we haven't used any GI specific anti-inflammatories since he can't tolerate them. My son typically has the tendency to do well on any anti-inflammtory briefly and then not respond
IV ceftriaxone can also help modulate the immune system I believe. So if you're not seeing dieoff but only positive things that could be the reason. We have been on the 'lyme wild goose chase hunt' some years back and got no where. In autism, the symptoms are due to inflammation and the immune system ( at least in my son) so controlling the inflammation is highly important IMHO. We tried IVIG and it didn't help either and steroids were awful.
HTH
J
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10 year old son with Crohn's, lyme and autism diagnosis and had high Th1 cytokines. Started Benicar Nov 9th 2008 at 20mg 6 times a day
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alexmom
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Posted: Tue Dec 16th, 2008 13:37 |
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Hi J,
so glad you emailed me back. autism is a hard thing to figure out. i agree with inflammation being key to helping these kids. my son to, anti inflammatory work well and then nothing. i had my son also scoped by dr kregsman 4 times, he has colitis in his gut as well. he has had since 4 years old many lyme symptoms. night sweats, red blotchy rashes (bartonella) rage attackes, and the only thing that has every helped him has been antibiotcs. which in turn has also made some matters worse with his gut. i have all along been giving him probiotics, anti fungals, he is gluten casein corn and soy and sugar free diet. completly organic etc etc etc. i have done IV gluthatione with good success, but then seems to not respond again. when he gets really really bad the only thing that seems to put a DENT into him is the IV rocephin. but in the long run does nothing but calm symptoms down. i am so glad you did not see anything negative on benicar.. that is a good thing.. interesting you saw a positive the first day.. but he seems better overall?? where their any specific symptoms to his lyme? my child has difficulty swallowing from the lyme. on allinia which treats babesia he is better but then herx's so bad we need to stop. lyme has been something that i have not been able to get under control to be able to move forward. where are your from?? i am in new york.. cheryl
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Juanita
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Posted: Tue Dec 16th, 2008 19:41 |
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Reading Brendon's Mom's interview might be helpful for you both. http://bacteriality.com/2008/03/15/interview18/
Doreen's son has been doing very well with his MP treating his autism. Your sons are so lucky to have Moms who keep hunting for answers to that they can have improved and healthier lives. It does take patience as the MP isn't an instant fix, but it works. I am so happy for your families. 
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MCS, CFS, FM Began MP- Aug/07
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KayJ
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Posted: Fri Dec 19th, 2008 23:38 |
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Hi Cheryl,
Yes, I do think he is slightly better overall. He has been an irritable, unhappy kid in the past. So for us, the first step is for him to be happy. I do see that if I increase Benicar to 40mg, he has a better BM (he has slow transit and constipation thanks to the gut inflammation). Yes, we 've seen Dr.K 5 years ago and once recently and my son shows positive for the Crohn's markers besides his ulcers in the ileum.
As far as lyme symptoms go, I am not sure if I can attribute his symptoms to lyme as I try to be neutral about this lyme thing. Maybe it's ALL lyme may be it's not. We have even tested his GI biopsies in the past for Bb, bart , bab, etc and it was all negative. My husband has high titers for Bb but has no symptoms. I do feel my son's profile fits CWD disease and he has had Kawasaki Syndrome as a baby, and now Crohn's which are all Th1 diseases. He also started stimming like crazy on CLO and still does when I give it to him so that made me think either A or D is a problem for him. He did do well on his first Bicillin shot many years ago and then nothing after that. Again on Bactrim and Rifampin (for his bart), he started to say new words etc until he turned red all over his body with high fever. His LLMD had no clue so I stopped immediately. I worried about SJS with Bactrim and the doc was useless.
HTH, you can email me privately if you have more questions.
J
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10 year old son with Crohn's, lyme and autism diagnosis and had high Th1 cytokines. Started Benicar Nov 9th 2008 at 20mg 6 times a day
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KayJ
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Posted: Fri Dec 19th, 2008 23:42 |
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Thanks Juanita for your kind words. Yes, I have seen that interview before.
Thanks
J
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10 year old son with Crohn's, lyme and autism diagnosis and had high Th1 cytokines. Started Benicar Nov 9th 2008 at 20mg 6 times a day
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alexmom
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Posted: Sat Dec 20th, 2008 20:25 |
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HI J,
i would love to talk more with you. can you email me off line at viserto@optonline.net? since we both have kids with autism and similar issues.
thanks cheryl
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alexmom
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Posted: Sat Dec 20th, 2008 23:10 |
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| j, sorry for the type 0 email address is viserto@optonline.net .. look forward to your email.. love to talk some more on issues.. thanks cheryl
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alexmom
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Posted: Sun Dec 21st, 2008 14:39 |
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| Hi group, just gave my son his first dosage of benicar 20mg. i had to crush and put into some cherry juice to get him to drink it. i am so nervous and pray this helps him. my question is that with autistic kids sometimes it takes a bit of time to get them to take anything. this morning it took alex 25 minutes to take his benicar, so from that point i will give him his second dosage exactly 6 hours later, but it could take him another 20 minutes to do this again, leaving me at not exactly 6 hours but maybe 6 and a half.. should i be concerned?? trying to flavor it in something to have him do it quicker. i hope to see some anti inflammatory affect with him. he cannot swallow food at times due to high inflammation from the infections. thanks group cheryl
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Dr Trevor Marshall
Research Team
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Posted: Sun Dec 21st, 2008 15:02 |
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Benicar typically takes 90 minutes to be absorbed from the GI tract in any case, so I wouldn't worry too much about achieving dosing perfection at the beginning. Just make sure you follow Doc's instructions as best you can, and let him know about this sort of deviation next time you see him.
It could take a week to allow the hormones to restabilize, it may synchronize better with New Year, rather than Christmas 
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alexmom
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Posted: Sat Dec 27th, 2008 19:58 |
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| Hi Group, my son alex has been on benicar 20mg every 6 hours for his lyme. and he has autism.. update, the first night after only three doses of benicar he broke out in a cold sore on his lip that still after a week has not gone away.. after two days of benicar his rage attacks began to lessen and swallowing difficulties better. the fifth day,, christmas day,, he went the whole 24 hours without any screaming episodes and swallowed food with no problem.. this was the first day in MONTHS we have seen him feel better. he even waved hi to us two times and said some words we have not heard in a long time, and eye contact better.. we knew we are on to something.. then the day after christmas we began to see a weird rash on his face that would last about two hours and go.. his also started to have symptoms already return so quickly.. today , saturaday has been ROUGH.. alot of meltdowns and more tired then normal, and had trouble swallowing.. my question is,, do you have a herx this fast on benicar?? we did not even add in mino yet?? thanks cheryl Last edited on Sat Dec 27th, 2008 19:58 by alexmom
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