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Our appointment with Dr. Lin Today!


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Hi everyone, good news here! We may not need to travel to Chicago immediately. We saw Dr. Lin today in Irvine and he is WONDERFUL. He listened, made sure he pieced it all together, looked over all son's lab results, then gave an explanation for what appears to be going on. Firstly, thanks to Dr. T. who was the FIRST doctor in 9 years to think of checking my son's immune system. Based on my son's IgA subclass deficiency, it is plausible that my son has NEVER recovered from his infections that began 9 years ago, although he has been treated. His hunch is that he has not only a chronic Clostridium difficile colonization, but persistent Mycoplasma infection, and probable Strep infection. So, Dr. Lin has put him on 500 mg. azithromycin, as well as diflucan (which i am a bit nervous about- I would be more comfortable with nystatin for an antifungal), as well as Vancomycin! Vancomycin is what he recovered so nicely on last year. In addition, he advised a very high dose of an antioxidant, like 1000 mg. vitamin C couple times daily, as well as a high potency probiotic, whatever he can tolerate. He recommended Ther-biotic. He said in order to avoid ivig my son would need to stay on an antibiotic for a couple of years. Maybe down the road ivig will be covered by insurance. If he doesn't respond to the antibiotic treatment, I will beg, borrow, or steal the money to pay for ivig, but he has always responded so well to antibiotics in the past. So, we have all summer to recover. His grades are in the toilet now- D's and F's and I don't even really care. I just hope he can come out of his shell again and be the little boy he used to be. Cam kinase results will be back in a couple of weeks, and we will have the final piece of the puzzle. After 9 years, we finally have a picture of what is going on. Dr. Lin also shared a cutting edge therapy for gut related neuro disorders: The placement of a pig whipworms into the host's gut as a way to trick the immune system into leaving the brain alone! I will post the links to this article/research later. Anyway, thanks everyone for so much help over the past year. You all have been my only strength.

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Hi everyone, good news here! We may not need to travel to Chicago immediately. We saw Dr. Lin today in Irvine and he is WONDERFUL. He listened, made sure he pieced it all together, looked over all son's lab results, then gave an explanation for what appears to be going on. Firstly, thanks to Dr. T. who was the FIRST doctor in 9 years to think of checking my son's immune system. Based on my son's IgA subclass deficiency, it is plausible that my son has NEVER recovered from his infections that began 9 years ago, although he has been treated. His hunch is that he has not only a chronic Clostridium difficile colonization, but persistent Mycoplasma infection, and probable Strep infection. So, Dr. Lin has put him on 500 mg. azithromycin, as well as diflucan (which i am a bit nervous about- I would be more comfortable with nystatin for an antifungal), as well as Vancomycin! Vancomycin is what he recovered so nicely on last year. In addition, he advised a very high dose of an antioxidant, like 1000 mg. vitamin C couple times daily, as well as a high potency probiotic, whatever he can tolerate. He recommended Ther-biotic. He said in order to avoid ivig my son would need to stay on an antibiotic for a couple of years. Maybe down the road ivig will be covered by insurance. If he doesn't respond to the antibiotic treatment, I will beg, borrow, or steal the money to pay for ivig, but he has always responded so well to antibiotics in the past. So, we have all summer to recover. His grades are in the toilet now- D's and F's and I don't even really care. I just hope he can come out of his shell again and be the little boy he used to be. Cam kinase results will be back in a couple of weeks, and we will have the final piece of the puzzle. After 9 years, we finally have a picture of what is going on. Dr. Lin also shared a cutting edge therapy for gut related neuro disorders: The placement of a pig whipworms into the host's gut as a way to trick the immune system into leaving the brain alone! I will post the links to this article/research later. Anyway, thanks everyone for so much help over the past year. You all have been my only strength.

WOW! Great news- I am very interested to hear how everything goes- we are going to do a stool yest for Clostridium- have you had experience with that- we have a LOT of stomach problems so I would love to hear success stories! Congrats on your big Day!

Brandy

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Hi Brandy, yes, we found out about his Clostridium difficile via stool test; specifically toxin test, not culture. That was last year, and subsequent tests have been clear, but there are many false negatives with Clostridium, as the toxin is difficult to detect unless super concentrated. Culturing is not usually done, as it is a very difficult bacterium to culture. They mostly use toxin test.

 

 

 

 

WOW! Great news- I am very interested to hear how everything goes- we are going to do a stool yest for Clostridium- have you had experience with that- we have a LOT of stomach problems so I would love to hear success stories! Congrats on your big Day!

Brandy

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Mary, here is the link for the article on immune regulation via whipworm for your night time reading enjoyment! Seems like we're going backwards in medicine... maybe that's a good thing! Enjoy!

 

P.s., we'll be exhausting all other resources before we get in line for this :D

 

 

 

Good news...such wonderful news...and treatments, even better news. Now where does one get a pig whipworm and then how does it get into the gut? Eeewww....but I'm for whatever works!
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phasmid...Great news on your appt! Sure hope the treatment course is the answer for your son.

 

Not sure if this is the same thing that you meant to post but probably along the same lines

 

http://www.guardian.co.uk/lifeandstyle/201...rence-tim-adams

 

Gut instinct: the miracle of the parasitic hookworm

 

Ok, that article was absolutely, completely, freaking fascinating. Thanks for sharing that!

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Hi everyone, good news here! We may not need to travel to Chicago immediately. We saw Dr. Lin today in Irvine and he is WONDERFUL. He listened, made sure he pieced it all together, looked over all son's lab results, then gave an explanation for what appears to be going on. Firstly, thanks to Dr. T. who was the FIRST doctor in 9 years to think of checking my son's immune system. Based on my son's IgA subclass deficiency, it is plausible that my son has NEVER recovered from his infections that began 9 years ago, although he has been treated. His hunch is that he has not only a chronic Clostridium difficile colonization, but persistent Mycoplasma infection, and probable Strep infection. So, Dr. Lin has put him on 500 mg. azithromycin, as well as diflucan (which i am a bit nervous about- I would be more comfortable with nystatin for an antifungal), as well as Vancomycin! Vancomycin is what he recovered so nicely on last year. In addition, he advised a very high dose of an antioxidant, like 1000 mg. vitamin C couple times daily, as well as a high potency probiotic, whatever he can tolerate. He recommended Ther-biotic. He said in order to avoid ivig my son would need to stay on an antibiotic for a couple of years. Maybe down the road ivig will be covered by insurance. If he doesn't respond to the antibiotic treatment, I will beg, borrow, or steal the money to pay for ivig, but he has always responded so well to antibiotics in the past. So, we have all summer to recover. His grades are in the toilet now- D's and F's and I don't even really care. I just hope he can come out of his shell again and be the little boy he used to be. Cam kinase results will be back in a couple of weeks, and we will have the final piece of the puzzle. After 9 years, we finally have a picture of what is going on. Dr. Lin also shared a cutting edge therapy for gut related neuro disorders: The placement of a pig whipworms into the host's gut as a way to trick the immune system into leaving the brain alone! I will post the links to this article/research later. Anyway, thanks everyone for so much help over the past year. You all have been my only strength.
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Hi everyone, good news here! We may not need to travel to Chicago immediately. We saw Dr. Lin today in Irvine and he is WONDERFUL. He listened, made sure he pieced it all together, looked over all son's lab results, then gave an explanation for what appears to be going on. Firstly, thanks to Dr. T. who was the FIRST doctor in 9 years to think of checking my son's immune system. Based on my son's IgA subclass deficiency, it is plausible that my son has NEVER recovered from his infections that began 9 years ago, although he has been treated. His hunch is that he has not only a chronic Clostridium difficile colonization, but persistent Mycoplasma infection, and probable Strep infection. So, Dr. Lin has put him on 500 mg. azithromycin, as well as diflucan (which i am a bit nervous about- I would be more comfortable with nystatin for an antifungal), as well as Vancomycin! Vancomycin is what he recovered so nicely on last year. In addition, he advised a very high dose of an antioxidant, like 1000 mg. vitamin C couple times daily, as well as a high potency probiotic, whatever he can tolerate. He recommended Ther-biotic. He said in order to avoid ivig my son would need to stay on an antibiotic for a couple of years. Maybe down the road ivig will be covered by insurance. If he doesn't respond to the antibiotic treatment, I will beg, borrow, or steal the money to pay for ivig, but he has always responded so well to antibiotics in the past. So, we have all summer to recover. His grades are in the toilet now- D's and F's and I don't even really care. I just hope he can come out of his shell again and be the little boy he used to be. Cam kinase results will be back in a couple of weeks, and we will have the final piece of the puzzle. After 9 years, we finally have a picture of what is going on. Dr. Lin also shared a cutting edge therapy for gut related neuro disorders: The placement of a pig whipworms into the host's gut as a way to trick the immune system into leaving the brain alone! I will post the links to this article/research later. Anyway, thanks everyone for so much help over the past year. You all have been my only strength.

 

We really like Dr. Lin too. I think I am finally starting to see some results with my son. I cannot wait to hear about your progress.

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