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caroldeleah
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Posted: Thu Feb 21st, 2008 19:52 |
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| Further to your recent response......Yes, I agree that the D-Metabolite tests would be conclusive. I have been reading http://www.sarcinfo.com and learned even more. The puzzle has started to come together. I'll try to post what happens. Thanks, Carol
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Uveitis Hashimotos Hypothyroidism Thyroid Nodule Joint Pain Refractive Myopia 1,25D37 PreMP 25D28(7/08) PredForte Combigan Levoxyl RefreshPlusSglUse NoIRs outdoors
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caroldeleah
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Posted: Thu Feb 21st, 2008 19:59 |
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| Thanks again, Julia, When I refer to 7-grain cereal, I mean purchased bulk at the health food store to be mixed with water and a little bit of salt and boiled for a hot breakfast cereal, not processed. But.....I think it may have whole flax seed in it. Is that a problem? Also the rolled oats are bought there too. I could ask for an ingredient list, I'm sure. Carol
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Uveitis Hashimotos Hypothyroidism Thyroid Nodule Joint Pain Refractive Myopia 1,25D37 PreMP 25D28(7/08) PredForte Combigan Levoxyl RefreshPlusSglUse NoIRs outdoors
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Julia
Advocate
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Posted: Thu Feb 21st, 2008 22:28 |
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Carol,
Dr Marshall says of flax seed (linseed):
flaxseed has various compounds which appear to act on the immune system - something to avoid while on the MP
This very unofficial research report says it contains vitamin D, but I've been unable to come up with anything else on that outside our own sites. It can't be much or it would be touted as a vit D supplement by every health store!! Still, better to err on the safe side.
Julia 
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Sarcoidosis, uveitis, hypercalcaemia, osteoarthritis, eczema. MP May 04.
Leading a full life - good old MP! Julia's story
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caroldeleah
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Posted: Fri Feb 22nd, 2008 16:45 |
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| Thanks, Julia for you answers about MP and the family. I am cruising through watching the dvd's from ARF. I appreciate all your help. Carol
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Uveitis Hashimotos Hypothyroidism Thyroid Nodule Joint Pain Refractive Myopia 1,25D37 PreMP 25D28(7/08) PredForte Combigan Levoxyl RefreshPlusSglUse NoIRs outdoors
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caroldeleah
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Posted: Mon Feb 25th, 2008 17:34 |
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| May I ask the favor of anyone in addition to Sherry who would share their menu plans for MP? Thanks, Carol
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Uveitis Hashimotos Hypothyroidism Thyroid Nodule Joint Pain Refractive Myopia 1,25D37 PreMP 25D28(7/08) PredForte Combigan Levoxyl RefreshPlusSglUse NoIRs outdoors
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caroldeleah
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Posted: Wed Feb 27th, 2008 20:45 |
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Relapsing polychondritis and Sarcoidosis
I have read extensively regarding both of these inflammatory diseases and I am wondering what is the difference between the two diseases? Carol
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Uveitis Hashimotos Hypothyroidism Thyroid Nodule Joint Pain Refractive Myopia 1,25D37 PreMP 25D28(7/08) PredForte Combigan Levoxyl RefreshPlusSglUse NoIRs outdoors
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Julia
Advocate
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Posted: Wed Feb 27th, 2008 21:24 |
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Carol,
Relapsing Polychondritis is a new one to me, but it appears to be another of the so-called autoimmune diseases, but one which mainly presents with cartilage destruction, especially in the ears, nose and upper airways. Sarcoidosis usually - but not always - attacks the lungs. After that, like all the Th1 diseases, they share fatigue, aches and pains and other symptoms.
It sounds as if Relapsing Polychondritis is another one to add to the growing list of diseases that would respond to the MP 
Julia
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Sarcoidosis, uveitis, hypercalcaemia, osteoarthritis, eczema. MP May 04.
Leading a full life - good old MP! Julia's story
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caroldeleah
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Posted: Mon Mar 3rd, 2008 17:27 |
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| I'm sorry, but I'm not sure how to post lab results. I'm ready to do it right now. Thanks, Carol
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Uveitis Hashimotos Hypothyroidism Thyroid Nodule Joint Pain Refractive Myopia 1,25D37 PreMP 25D28(7/08) PredForte Combigan Levoxyl RefreshPlusSglUse NoIRs outdoors
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Chris
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Posted: Mon Mar 3rd, 2008 19:56 |
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Of course ...
I will assume you've read the intro material, such as: Before You Begin the Marshall Protocol
Then, create a login on
The MP study site to track your daughter's progress.
The forum for submitting initial tests is:
Preliminary Test Results (for comment)
Read the policy page and the 'what to include' page.
[url=http://www.marshallprotocol.com/forum22/10021.htmlPolicy regarding posting lab test results[/url]
WHAT to INCLUDE in your preliminary test result reports
On the right hand side of the page, at the top of the list of subjects is a 'New Topic' button. Create a new topic for your daughter's tests, and enter the data.
Then, repeat as needed for the other family members.
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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caroldeleah
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Posted: Sat Apr 5th, 2008 18:29 |
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Has anyone experienced the MP to reverse the condition of a porcelain gallbladder?
I am asking the experience of others who may have had a gallbladder in this condition removed and then subsequently gone on the MP.
Any information is welcome. Thanks, Carol
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Uveitis Hashimotos Hypothyroidism Thyroid Nodule Joint Pain Refractive Myopia 1,25D37 PreMP 25D28(7/08) PredForte Combigan Levoxyl RefreshPlusSglUse NoIRs outdoors
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caroldeleah
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Posted: Sat Apr 5th, 2008 18:31 |
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| I am trying to find Gina's offer of the "Packet for doctors" which I found once and cannot find now. Thanks in advance for your help. Carol
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Uveitis Hashimotos Hypothyroidism Thyroid Nodule Joint Pain Refractive Myopia 1,25D37 PreMP 25D28(7/08) PredForte Combigan Levoxyl RefreshPlusSglUse NoIRs outdoors
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Julia
Advocate
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Posted: Sat Apr 5th, 2008 19:58 |
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Carol, it's the the fourth topic down in the information posts at the top of this forum - Folder of MP information for your doctor
Julia
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Sarcoidosis, uveitis, hypercalcaemia, osteoarthritis, eczema. MP May 04.
Leading a full life - good old MP! Julia's story
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JRFoutin
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Posted: Sun Apr 6th, 2008 05:23 |
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Caroldeleah,
High 1,25-D, PTH and calcium are related issues in Th1. You may want to read more on this calcium page, and take a look at Dr Marshall's diagram in the upper right corner of his Karolinska DMM 2008 poster preprint.
You might want to read more here:
What should I do for liver or gallbladder pain? where you will notice one person decided to keep their gallbladder (and did) even though it was in a lot of trouble initially.
Some have done the MP with missing parts -- even gall bladders, but most try to stay intact.
You might discuss your specific options with nurses who respond to member's progress report threads before making a final decision with your doctor. If there is a chance to improve on what you have rather than toss it on the scrap heap, then it is worth the time an effort to consider your options carefully.
Best to you Caroldeleah--Janet
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12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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caroldeleah
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Posted: Mon Apr 7th, 2008 19:36 |
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I did as suggested on sarcinfo and requested my husband's pathology reports.
In 4/01 his dx was NHL and I am choosing parts of the report which refer to B cells and T cells...... Bone Marrow Biopsy 3/01immunohistochemistry performed on paraffin embedded tissue are suboptimal due to the presence of only a small amount of poorly preserved tissue. The stains showed frequent scattered CD20 positive B cells and fewer CD3 positive T cells. Immunostains for immunoglobulin kappa and lambda light chains and IgA, IgD, IgM heavy chains are difficult to interpret due to high background.
Note: The findings are consistent with involvement by a non-hodgkin b-cell lymphoma, low grade, with evidence of plasmacytic differentitation. The differential diagnosis includes lymphoplasmacytic lymphoma and marginal zone lymphoma. The absence of CD5 and CD10 expression makes chronic lymphocytic leukemia, mantle cell lymphoma dnfollicular lymphoma unlikely. Correlation with clinicalfindings is advised.
Bone Marrow Biopsy 6/01 (after 2 rounds of Fludarabine) Immunohistochemistry performed on paraffin embedded tissue revealed scattered small aggregates of CD3 positive T cells, one of which contains CD20 positive B cells. Immunostains for immunoglobulin dappa and lambda light chains suggest an excess of dappa but are difficult to interpret due to high background.
By report, trichrome stain performed at the referring institution revealed no fibrosis.
Note: The finding of multiple lymphoid aggregates and a patchy lymphoplasmacytic infiltrate in a patient with a know history raise the possibility of focal involvement by persistent non-Hodgkin lymphoma. Correlation with clinical finding is advised.
Right lung biopsies: The microscopic sections show a dense infiltrate of atypical lymphoid cells intermixed with bands of fibrosis. There is maked crush artifact of the cells. The intact lymphoid cells are medium to large sized with irregular to folded nuclei, vesicular chromatin, small nucleoli and small amounts of cytoplasm. By report, flow cytometric analysis performed at......revealed a monoclonal B-cell population comprising 50% of the total cells, which are positive for CD45, CD19, CD20, CD22 and CD10 withr estricted expression of immunoglobulin kappa light chain.
Bone Marrow Biopsies 1/07: Mildly hypocellular marrow (60% fat)
Erythroid elements are mildly proportionally increased and exhibit matuation.
Myeloid elements are mildly proportionally decreased and exhibit maturation.
Myeloblasts comprise less than 5% of the marow cellularity.
Megakaryocytes are present in normal number.
Scattered small lymphocytes and plasma cells are seen (non-diagnostic)
No lymphoid aggregates are seen
Reticulin stain, performed at the referring institution and received for review reveals that the reticulin is not increased
Bone trabeculae exhibit focal osteoblastic activity
The aspirate smaear findings are of a cellular, spicular smear showing maturing trilineag hematopoiesis and scattered small lymphocytes.
A 200-cell differential count shows: myeloids 57%, erythroids 33%, and lymphocytes 10%
The peripheral blood smear shows normachromic, normocytic red blood cells. Relative lymphocytosis with scattered large granular lymphocytes are seen.
By report, flow cytometric analysis performed at.......showed approx 45% of the total cells are lymphoid, comprising mostly of CD8+ T cell population (CD2+, CD3+, dim CD5+, CD7+, CD8+, CD16+, and CD57+). Virtually no B cells were identified. There was no increase in blasts.
Note: The overall findings are of a mildly hypocellular marrow with maturing trilineage hematopoiesis and mild relative erythroid hyperplasia. Diagnostic features of involvement by a B cell lymphoproliferative disorder are not seen. The predominant CD8+ T cell population by flow cytometry is most likely reactive, however, further cytometry analysis and T-cell gene rearrangement studies on peripheral blood should be considered if clinically indicated.
After this he was treated with CHOP-R. His headaches went away for a short while, but are now back with a vengeance. The only relief he has is sleep and lying down
If I understand what I read on sarcinfo correctly, T-cell involvement means sarcoidosis and B-cell involvement means lymphoma.
Since 2003, my husband has been suffering from headaches like he has a tight band around his head, vertigo, tinnutis, peripheral neuropathy, DVT, feeling like he is intoxicated, fatigue etc and the doctors tell us things like.......You are not a normal case of lymphoma and if you reduce your salt intake, your tinnutis will go away, ETC, ETC.
Since learning of the possibility of confusing the two diseases, I asked the oncologist about sarc and she had the strangest look on her face!! Like--I can't believe you know about this!!! His ACE is normal and at the next visit she has suggested that he see a new oncologist in the practice.
Should I be suspicious about what is going on here? Admittedly, I omitted much of the 3/01 and 6/01 path report, so maybe I have missed some important info for you. Sorry.
I think he is suffering from Th1 if not sarc. I am quite tired of the runaround I am getting and don't know what to do. I understand most of what I read on MP, but have difficulty expressing it clearly to a physician.
I have tried to develop another profile for myself, but I must be having trouble because I have only 1 e-mail address--any suggestions?
Thanks for your help. By the way.......what does IMO mean?
Carol
PS. The lymphoma specialist in Boston also mentioned the day we visited her in 2/07--I wonder whether we have the correct diagnosis. So that has also given me personal grounds to pursue this.
Last edited on Mon Apr 7th, 2008 19:39 by caroldeleah
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Uveitis Hashimotos Hypothyroidism Thyroid Nodule Joint Pain Refractive Myopia 1,25D37 PreMP 25D28(7/08) PredForte Combigan Levoxyl RefreshPlusSglUse NoIRs outdoors
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Julia
Advocate
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Posted: Mon Apr 7th, 2008 21:55 |
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Carol,
It will need someone medical to look at these results. Meanwhile, I'll answer your easier questions! IMO is 'in my opinion', and IMHO is 'in my humble opinion'. A useful website is the Internet Acronyms Dictionary - much of it is silly stuff (such as IBM = I Blame Microsoft) but it contains the common sensible ones as well.
I have tried to develop another profile for myself, but I must be having trouble because I have only 1 e-mail address--any suggestions?
Do you mean you want a second profile in addition to the first, or that you want to modify the information in the current one? I don't know why you would want a second one - that would have us really confused!
I've merged all your questions into your own thread for continuity If your husband is interested in the MP, it would be good for him to register and post if at all possible. I'll ask a medical moderator to have a look at his report.
Julia
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Sarcoidosis, uveitis, hypercalcaemia, osteoarthritis, eczema. MP May 04.
Leading a full life - good old MP! Julia's story
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caroldeleah
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Posted: Tue Apr 8th, 2008 18:47 |
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Hi Julia, I have been asking my doctor to test my D-Metabolites and she granted my request (I thought) saying that she was ordering more than I had asked for, but when the results came back, the Vit D 25 was the only test done. So I have those results now and I thought it would be proper to start a new profile for myself. That is why I was asking about only having one e-mail address.
My first thread has been for my daughter.
Although my husband does not use the computer, I agree that he should register and post. He has a NHL dx (which I wonder if it is a misdiagnosis) and my daughter has an idiopathic uveitis dx. I guess I am just looking for a trustworthy opinion about pushing his doctors to further testing for Th1, if not sarcoidosis.
Furthermore, my questions about his health situation are as much for the rest of our family (our children--all minors-- and me) as it is for him, considering the research that has been done about "chronic inflammatory disease and families". I hope this makes sense and that it's OK for me to ask these questions.
Thank you SO much, Julia. Carol
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Uveitis Hashimotos Hypothyroidism Thyroid Nodule Joint Pain Refractive Myopia 1,25D37 PreMP 25D28(7/08) PredForte Combigan Levoxyl RefreshPlusSglUse NoIRs outdoors
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caroldeleah
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Posted: Tue Apr 8th, 2008 19:06 |
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| Trevor states that someone with Th1 inflammation should avoid having their gallbladder removed at all costs. Is there an answer to why he states that so dogmatically (I don't mean to use that word in a negative sense? He would not state that without having a very good reason, I know. I've been told that I need to have my porcelain gallbladder removed because it could change to cancer. I have not posted my D-25 results yet because I was going to start my own profile, but they are low and I don't know the D1,25. Thanks, Carol
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Uveitis Hashimotos Hypothyroidism Thyroid Nodule Joint Pain Refractive Myopia 1,25D37 PreMP 25D28(7/08) PredForte Combigan Levoxyl RefreshPlusSglUse NoIRs outdoors
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Julia
Advocate
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Posted: Tue Apr 8th, 2008 23:35 |
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Carol,
You're certainly doing some reading! Some of the material on Sarcinfo is six years old, and the MP has changed to adapt to Dr Marshall's developing understanding of the science as he continues his research. The only tests you need now are in Which diagnostic tests do I need?
Can you remember where you found that Dr Marshall has said to avoid gallbladder surgery? I'd like to read it in context. My guess would be that it's a general recommendation to avoid all surgery if at all possible, because Th1 sufferers often have difficulty healing, and the CWD bacteria love infecting old wounds. See I need to have a diagnostic procedure/surgery/dental work. What should I know?
While you're here on Cure MyTh1, it's best if you keep all your questions (which are all very welcome ) here in one thread, even if they include questions for other family members. On the study site, you would need a separate identity for each person doing the MP, or posting results.
Your daughter could register her own email address. If your husband doesn't have one, some servers allow you to create another account with a different username but the same thing after the @. Or he could just join Yahoo or one of the many other free webmail servers. If you're using Outlook, you add this new address to the 'accounts' so that you don't have to keep going to the website. If I'm not explaining very well, it's because I'm a very self-taught computer person!
Julia
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Sarcoidosis, uveitis, hypercalcaemia, osteoarthritis, eczema. MP May 04.
Leading a full life - good old MP! Julia's story
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caroldeleah
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Posted: Wed Apr 9th, 2008 18:37 |
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| Julia, JRFoutin responded to one of my posts on 4/6/08. In that post is highlighted "What Should I do for liver and gallbladder pain?" Trevor's quote is in that post dated 1/14/07 by Meg and it is highlighted in black and begins with the words "Bottom Line". There Trevor states to avoid surgical removal of the gallbladder at all costs in a patient with Th1 inflammation. In a previous post I was asking why he believes this so strongly. Thanks, Carol
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Uveitis Hashimotos Hypothyroidism Thyroid Nodule Joint Pain Refractive Myopia 1,25D37 PreMP 25D28(7/08) PredForte Combigan Levoxyl RefreshPlusSglUse NoIRs outdoors
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Julia
Advocate
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Posted: Wed Apr 9th, 2008 20:08 |
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Carol,
It would appear that he hopes the gall bladder will start to function properly again when the bacteria are tackled. But I've no idea whether 'porcelain' gallbladder is reversible. Maybe you'll be our pioneer and find out! See CANCER concerning the warning that it might turn cancerous.
Julia
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Sarcoidosis, uveitis, hypercalcaemia, osteoarthritis, eczema. MP May 04.
Leading a full life - good old MP! Julia's story
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