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Roda

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I am putting this here since it has nothing to do with celiac. I was hoping for some advice, since alot of us on here do a lot of research about our own condition. I have been researching non surgical treatments for CPVPS (chronic post vasectomy pain syndrome) for the past 4 years. Last night I found an article describing IM injections of testerone for treating this. I could only find one other reference to this treatment and it described it as an "off lable use" unless there was a testerone deficiency. I will be looking into that since at one time his testerone was on the low end of normal. Here is a link to a little about our situation. He does not want to have any other surgery. I was sad one night and the kind people here helped me out. The original post was from about 6 months ago, but still applicable. He also has sperm granulomas and I'm pretty sure he has sperm antibodies(going to get tested for this too). The treatment described in the article is geared to help relieve pain( in the absence of physical causes like masses etc.), which he believes is caused from inflamation by an autoimmune reaction to the sperm(sperm either leaks out of the end of the vas deferens if an open ended techniquie was used or leaks from an epidimidal blowout thus creating the granuloma. The body sees the sperm as "foreign" and launches an immune reaction). Pain relief is obtained by supressing sperm production (makes a whole lot of sense to me). I'm sure there is nerve damage too contributing to his particular case, but maybe he could get some resoultion from the other aspect. I was wondering, would be innapropriate to try to contact the doctor who is the author of the journal article? I have two possible leads on his location. If it wouldn't be innappropriate, what would I say?

Thanks for listening.

https://www.celiac.com/gluten-free/index.ph...=58672&st=0


Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.

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If it's from a peer reviewed journal, they usually list the contact author's email address.


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

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If it's from a peer reviewed journal, they usually list the contact author's email address.

The article does not have this. It is from Military Medicine, Jun 2007. Copyright Association of Military Surgeons of the United States June 2007. From what I can gather the author is/was a colonel in the Army. I did a general search for the name and came up with two leads one in IL and the other in NM.


Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.

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The article does not have this. It is from Military Medicine, Jun 2007. Copyright Association of Military Surgeons of the United States June 2007. From what I can gather the author is/was a colonel in the Army. I did a general search for the name and came up with two leads one in IL and the other in NM.

I would not hesitate to try and contact this doctor. If nothing comes of the leads try contacting the editor of the Journal. They will have contact info. I hope he is able to help.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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I would not hesitate to try and contact this doctor. If nothing comes of the leads try contacting the editor of the Journal. They will have contact info. I hope he is able to help.

Thanks. I think the best lead so far is in Clovis, NM. I still don't even know what to say if I contact the office. I don't want to sound stupid. I need a little help with that. Any thoughts? I know it sounds stupid, but I feel a little excited about maybe getting some more information. We really just need someone to help us and so far most doctors don't want to deal/help us. I'ts frustrating, but I know alot of you understand that frustration all to well. Here is a link the article. Maybe I missed something.

http://Lame Advertisement/p/articles/mi_qa39...ag=content;col1


Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.

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Mil Med. 2007 Jun;172(6):676-9.

The use of testosterone in the treatment of chronic postvasectomy pain syndrome: case report and review of the literature.

Pienkos EJ.

Department of Surgery, Division of Urology, Landstuhl Army Medical Center, CMR 402, Landstuhl, Germany APO AE 09180.

http://www.ncbi.nlm.nih.gov/sites/entrez


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

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Mil Med. 2007 Jun;172(6):676-9.

The use of testosterone in the treatment of chronic postvasectomy pain syndrome: case report and review of the literature.

Pienkos EJ.

Department of Surgery, Division of Urology, Landstuhl Army Medical Center, CMR 402, Landstuhl, Germany APO AE 09180.

http://www.ncbi.nlm.nih.gov/sites/entrez

Thanks. I got all of that. After more digging last night I really think the NM lead is the one to go with. I just don't know what to say and how to present myself. I guess like anything else I have done I'll just wing it. :P


Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.

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Woo hoo! I found him! I called an office in NM and was able to leave my name, number and why I was calling with his nurse. Unfortunately he is on vacation until Jan. 4th, but she said she would get him the message and after would call me. I was so nervous my hands were shaking. I am going to take a copy of the article over to the urologist my husband sees locally. Maybe with more information we can coordinate something here. I am actually excited. I probably shouldn't because I don't want to get my hopes up and have a big let down. We have had many of those. Another good thing is my husband has agreed to let me attend his next appointment (I will have lots to say and discuss) and I think he is finaly ready to get some counseling about this with me. So hopefully this is the beginning of something good. :)


Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.

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Wow. Nice detecting! Hope he's got some good stuff to say.


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

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