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freddie ash
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| Joined: | Sat Jan 19th, 2008 |
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Posted: Sat Jun 5th, 2010 19:49 |
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HI ELIZABETH & CLAIRE
This is Fred in WV. On feeling better during pragnacy, I was told in 1982 when I was first diaganosed with my sarcoidosis, in pregnate women the sarcoidosis would go into remission. I now know that was because of the high vit-D that happens during that time.
Remember, we are all in this together and I am pulling for us.
Your friend in Sarcoidosis
Freddie
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Marysue
Foundation Staff
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Posted: Sat Jun 5th, 2010 23:55 |
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Beth,
If there is any correlation between your son's rickets and him acquiring it in the womb, it would not be due to vitamin D in the womb, but rather, infection from the TH1 pathogens which are passed directly to the fetus during gestation. Given your long term health issues and the continuing spread of your own TH1 illness/infection, this is certainly a likely cause. Here is a quote from the last paragraph on the MPKB article on rickets (linked above) that may help explain:
Trevor Marshall, PhD has suggested that rickets may be related to Th1 inflammation, as a number of patients on the Marshall Protocol with Th1 illnesses and their close relatives report having had rickets as children. Proponent of vitamin D supplementation claim that vitamin D added to the food supply was responsible for a historical decrease in rickets. But the history of rickets shows that a typical rickets case often had a history of smallpox, measles, or whooping cough.8 Plus, a 1997 study in Ethiopia found a high association between pneumonia and rickets.9 This provides more suggestive evidence that infection, either obvious and acute, or subtle and chronic, may play a role in the development of rickets and may exacerbate the effects of a low calcium diet.
The key information that you need to share with any doctor who will help you treat your son's rickets can be found on the MPKB article here:
http://mpkb.org/home/diseases/rickets
Marysue
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MP Apr09 (no breaks) | CFS '95, Fibromyalgia '95, infert/endomet '02 | hypotension, cardiac IP, chronic muscle/joint pain, neuro symptoms, severe light sensitivity | last 25D=<4 Sep10
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edithelizabeth
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| Joined: | Sun May 30th, 2010 |
| Location: | Georgia |
| Posts: | 14 |
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Posted: Sun Jun 6th, 2010 19:24 |
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Thanks Rico, I know you are tight and trying to help me.
I want to try to find a doctor willing to prescribe olmesartan-since it turns on my own innate immune system this is certainly what I want to do, I just don't know when I will be able to find a doctor willing to do it...
I was just thinking I probably could get on minocycline now while I'm looking for an MP doctor.
I have to admit I'm scared of getting worse before I get better. I've already dodged a bullet with the heart failure and cardiomyopathy. I had debilitating dementia for a year and half. There were times I wondered if I might forget I had a baby.
My goal was just to stay healthy enough to live long enough to make sure my son could swim and cross the street safely before I keel over.
Since my dementia went into remission out of the blue recently, I'm in such a state of euphoria that I've been able to open my mind to the possibility that may be I could get better in every way and I started researching and I found the MP.
Also from reading the MP pages I see that people with cardiac, neuro, or respiratory involvement need to have a really good doctor while on the protocol.
I have had cardiac and neuro involvement for the last two years...and while I had the Dresslers syndrome I had pleural effusions at the base of my lungs, so briefly I had three out of three.
I've got to have a great MP doctor that inspires confidence in me that he knows this stuff well enough when to push ahead and when to pull back, or I might just freak out with mistrust when I'm having IP and quit the protocol...
I have had SO MANY crappy doctors I am beginning to wonder if there are ANY good ones.
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edithelizabeth
29 ng/ml
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edithelizabeth
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| Joined: | Sun May 30th, 2010 |
| Location: | Georgia |
| Posts: | 14 |
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Posted: Sun Jun 6th, 2010 19:50 |
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Thanks Marysue.
Since I don't know my 1,25 levels, and I'll never be able to know what they were when I was pregnant,
I may never know if it was my own 1,25 levels, or maternal to child transmission of Th1, that caused his rickets,
but I am leaning toward phosphorus dysregulation...
The MP page on rickets brought low phosphorous as a cause of rickets to my attention, so I started researching phosphorous...
I found that fibroblasts growth factors induce phospaturia, (too much phosphate excretion through the urine I'm guessing)
through parathyroid hormone independent mechanisms.
This caught my eye because people with Graves disease get waxy red scars at the site of injuries,
because fibroblast growth factors are upregulated during Graves disease.
Too many fibroblasts congregate at the site of injury and make the tissue too fibrotic.
I developed several of these lesions in the years leading up to my heart failure and then another during the heart failure.
After my son was born and my heart was trying to heal I think too many of these fibroblasts went to my heart and that's what gave me the Dressler's syndrome-
which is really a restrictive pericarditis of immune origin.
Moreover when my son was about six months old someone finally thought to check on my parathyroid hormone levels and they were high...this lowers serum phosphate...
Since 1,25(OH)2VitD3, calcium and phosphate, thyroid, and PTH, all have feedback loops it becomes a chicken and the egg question,
but ultimately I feel confident that it was my Graves disease that caused my son's rickets,
and that if my calcium, vitamin D or phosphorous was too low it was the result, not the cause, of the disease process.
But I wouldn't have this confidence had I not found this site, and had your help to the rickets/osteomalacia MP page...so thanks again!
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edithelizabeth
29 ng/ml
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edithelizabeth
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| Joined: | Sun May 30th, 2010 |
| Location: | Georgia |
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Posted: Mon Jun 7th, 2010 13:15 |
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I am looking for a doctor, in Georgia, Virginia, Connecticut, or San Diego.
j.oquinn@knology.net
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edithelizabeth
29 ng/ml
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edithelizabeth
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Posted: Tue Jun 15th, 2010 11:44 |
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Hi All,
In getting prepared for my son's appointment about his rickets today,
I think I've discovered why Graves disease is noticeably absent from the wheel of Th1 illnesses...
If I'm understanding everything I've been reading on the MP webpages,
most people with Th1 illnesses will have low 25OH vitD3 because their bodies up-regulate it into 1,25 OH2vitD3.
At least until they are until end stage, at which point they may be low in 1,25 OH2 vit D3
(And I've discovered that my endo must not have been looking at the units of measure because I am not low in 25 OH vit D3 afterall...but at least his mistake got me here :-)
In Graves disease fibroblast growth factors (especially FGF 23) are up-regulated which causes phosphorus to be lost through the kidney...
Phosphorus loss, in turn, down-regulates the production of the enzyme which converts 25 OH2 vitD3 into 1,25 OH2 vit D3...
So unlike other TH1 illnesses where there is up regulation of dietary/sun/ and cholesterol into 1,25 OH2, there is actually lower 1,25 OH2 in people with Graves disease...
I still think Graves disease is caused by pathogens (because of how my aunt and I got fulminant with Graves at exactly the same time), now I just have to figure out if the pathogens could be properly called Th1 pathogens, and if that makes Graves disease a good candidate for the MP...
I'm thinking maybe Graves needs the MP most of all since the disease process itself down-regulates 1,25 OH2...I would think that, that process, would give the bacterial capnine a competitive advantage to get into the VDRs...
And I would think Olmesartan might work even faster since there isn't a lot of endogenous 1,25 OH 2 floating around even before people with Graves could start restricting dietary sources of 25OH and sun exposure...
Anyway I thought I would share this theory and get feed back from any of you who have been thinking about this sort of thing longer and harder than I have...
Beth
(who can't seem to post a short post...sorry)
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edithelizabeth
29 ng/ml
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Dr Trevor Marshall
Foundation Staff
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Posted: Thu Jun 17th, 2010 11:37 |
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Beth,
Sadly the operation of the human body is so immensely complex that it still defies our attempts, however well-meaning, to fully understand it.
Rickets seems to be related to Th1 immune dysfunction, and it can be reversed (reportedly) with calcium and phosphorous supplementation. There is no proof of the link to immune dysfunction yet, that is my 'educated guess' based on the data I have seen. You might want to read this page carefully:
http://www.ars.usda.gov/research/publications/publications.htm?SEQ_NO_115=169216
Especially note "it is not due to Vit D deficiency.." in the interpretive summary there.
I would doubt that Phosphorous alone controls kidney function, and I would want to have a closer look at your statement: "In Graves disease fibroblast growth factors (especially FGF 23) are up-regulated which causes phosphorus to be lost through the kidney..."
Is this in mice or men? But in either case, it just seems to simplistic to me. The body tends to be much more complex than this...
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edithelizabeth
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Posted: Thu Jun 17th, 2010 21:25 |
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Dr. Marshall,
I did not mean to oversimplify things, just doing my best to attempt to understand...and not write too much...
I did not mean to imply that up-regulation of vitamin D3 into 1,25(OH)2 is not going on in Sarcoidosis and other autoimmune disorders from Th1 pathogens.
I was just wondering if the opposite is going on in Graves disease,
and that is why Graves disease is noticeably absent from the Th1 disease wheel?
I used the MP webpages on rickets and osteomalacia as my starting point...
the information there made me research phosphorus regulation.
That turned up a lot of studies involving fibroblast growth factors which caught my eye because I already knew FGF23 was up-regulated in Graves disease.
I'm sure there were some murine studies that I read,
but for me the compelling information was about human diseases...
X-linked hypophosphatemic rickets (XLH)
hereditary hypophatemic rickets with hypercalciuria (HHRH)
autosomal dominant and autosomomal recessive hypophosphatemic rickets (ADHR,ARHR)
Dents disease
tumor induced osteomalacia
...because all these disease have increased levels of FGF 23 and renal tubular wasting of phosphorus.
According to what I read FGF 23 reduces the abundance of phosphorus transporters on the apical membrane of renal tubular cells impairing the reabsorption of phosphorus.
At least one source said "Likewise the 25(OH)D-ia-hydroxylase mRNA is decreased and synthesis 1,25 (OH)2D is impaired..." but it did not explain the mechanism to me.
Other sources said:
Several of these peptides (FGF 23, sFRP4, FGF7) inhibit the formation of 1, 25 (OH)2D3 by decreasing the expression of 25-hydroxy vitamin D- 1a hydroxylase.
In XLH and ARHR increased production of FGF 23 occurs in the skeleton, and in TIO the FGF 23 is produced by the tumor.
In ADHR there is a specific mutation that retards the metabolic clearance of FGF 23.
The one murine study I recall had to do with FGF 23 knockout mice that were hyperphosphatemic and had elevated 1,25(OH)2D3 levels.
I know these are not "autoimmune disorders" still the FGF 23/ 25 hydroxylase connection intrigues me.
There are quite a lot of links I would have to post to give you all that I read but I'd be glad to send them to you if you wanted...I just did the ordinary searches that you might expect...phophorus/rickets...phosphorus/FGF23...
I know I'm getting way in over my head, but I am anxious to figure out if the MP could still be for me even though Graves disease "appears" to involve a down regulation of 1,25 OH2D3 not necessarily the up-regulation like other Th1 diseases...
Maybe it only appears that Graves disease is different because it is "late stage" by the time it is diagnosed? Do you have an opinion about Graves disease?
But I am not a skeptic about the Th1 concept...my aunt and I went to a doctors office the very same week with fulminant Graves after seeing each other 4 months earlier.
I definitely believe we picked up a pathogen from our shared environment that exacerbated our latent Graves disease...and obviously we share some genes... also her brother and my uncle has Sarcoidosis...and these disease seem to share some of the same predisposing HLAs.
Hindsight being 20/20 I can see other periods of exacerbation that followed illness...I think I have had Graves disease 25 years...
I firmly believe "autoimmune" is a misnomer in most cases...yes the "self" is damaged as a by product of the immune system working to rid itself of pathogens, but suppression of the immune system by drugs (or in my case 7 pregnancies) ultimately leads to a worse outcome...
...in my case SREAT (steriod responsive encephalopathy associated with autoimmune thyroiditis), followed by heart failure with dilated cardiomyopathy, followed by Dresslers syndrome and a diminshed LVEF even after my heart returned to a normal size...
So I definitely want to stay away from steroids but I also don't want to have to endure dementia from TSI antibodies...I still have young children I am responsible for...
Steriods are the only treatment option for SREAT that I know of...
With the so-called "cure" right in the name of the disease I am hard pressed to find an alternative to steroids from an ordinary doctor.
Thank you for all you do on behalf of people with Th1 illnesses,
Beth
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edithelizabeth
29 ng/ml
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Joyful
Foundation Staff
| Joined: | Fri Oct 19th, 2007 |
| Location: | North America |
| Posts: | 1457 |
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Posted: Thu Jun 24th, 2010 06:33 |
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Here's hoping you can find a good doctor to treat you!
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