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Chris
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Posted: Thu Mar 26th, 2009 19:29 |
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Hello,
Re:
One question that I've had for a while, one for which I've found no answer as yet anywhere: what are the typical symptoms of a Th1 disease? I have seen the term "typical Th1 symptoms" mentioned, but they were never listed. Did I miss something?
I don't think there are 'typical symptoms', as in symptoms that are found in the typical TH1 patient. There's such a large variety of troubles that can be TH1. Sarcoid has been called a 'great pretender' as it can present like almost any disease in the medical lexicon. Get sick enough with TH1, and you might see all the various troubles, but you probably won't live that long.
There is a list of hyper-vitaminosis symptoms.
http://marshallprotocol.com/forum2/2588.html
or go to the home page of the new knowledge base and look for section 4: symptoms
http://mpkb.mp-dev.com/doku.php/home
The original disease symptoms and the IP present the same. In the first case, you are losing the battle, in the second case you win, but the troubles are the same.
Some of the troubles are caused by high 1,25D messing with various receptors. Some are caused by infected tissues no longer being up to their assigned task. In the first case, getting down the 1,25D removes the problem. In the second, the infected cells are destroyed causing a flare of the problem.
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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luxman
Member
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Posted: Thu Mar 26th, 2009 23:59 |
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So let me take an inventory of my symptoms before I start the Mino in a few days. They do sound like the possible IP symptoms listed on these sites, even though I'm not even on abx yet.
I'm marking my most disturbing/persistent/aggravating symptoms with bold.
GI
- Frequent, pale-colored stools (3-6 times a day), every day. Since 10/2008.
- Almost constant pain in colon. Since 10/2008.
- Occasional rectal pain. Since 10/2008.
- Occasional gas/bloating. Since 10/2008.
- Occasional mild heartburns. Since 01/2009.
- Occasional slight nausea. Since 01/2009.
- Occasional temporary loss of appetite. Since 01/2009.
- Globus feeling in esophagus, mild but sometimes getting worse. Since 02/2009.
Respiratory
- Mild cough several times a day, every day. Since 12/2008.
- Postnasal drip. Since 12/2008.
- Difficulty breathing through nose. Since forever.
- Sore throat, need to clear throat. Since 01/2009.
- Tenderness under lower jaw bone. Since 01/2009.
- Very occasional very mild earache in left ear. Since 09/2001.*
Neurological(?)
- LITERALLY constant (24/7) nonvertigo dizziness. Since 10/2008.
- Constant buzzing in left ear (tinnitus). Since 02/2009.
- Remains of Bell's palsy (mild dysfunction). Since 09/2001.*
- Very mild muscle spasms in skeletal muscles. Since 02/2009.
- Occasionally twitching right eyelid. Since 02/2009.
- Suspected mild brain fog (difficulty finding words, etc.).
Muscles/joints(?)
- Muscle/joint pain near right shoulder blade. Since 01/2009.
- Occasional pectoral muscle pains. 12/2008-01/2009. Mostly gone.
- Occasional lower back pain. Aggravated by exertion.
- Occasional hip joint pain. Around 05/2008, it was intolerable with sport. Resolved with rest. Rarely returns in milder form.
- Occasional lower arm/wrist muscle/bone pain.
- Frequent shin splints. For years.
- Occasional cramping of neck muscles on left side. Since 09/2001.*
- "Lockjaw"-like cramping sensation on left side. Since 09/2001.*
Cardiovascular
- Hypertension. Detected in 09/2001*, recurring.
- Occasional palpitations.
- Fast heartbeat. Worse with anxiety.
Renal
- Frequent, watery, or light greenish(?) urine. Since 02/2009.
- Lower back pain that may or may not come from kidneys.
General/Other
- General malaise (better and worse days). Since 02/2009.
- Headaches. Around 09/2001*, returning few times a year since 2008, few times a month since 02/2009.
- Tiredness. Better and worse days. Since 02/2009.
- Muscle weakness. Better and worse days. Associated with the tiredness. Since 02/2009.
- Pain in groin, exacerbated with exercise. For several months.
- Occasional mild pain around testicles. Since 10/2008.
- Slight loss of libido. Gradually for months.
- Very occasional red flushing in arms/face, with no assoicated heat sensation. Since 02/2009.
I'm sure I've missed some... If I can think of something else, I'll ask a moderator to add it, or I'll just post it.
*I had an episode of headaches, earaches, one reading of hypertension in 2001. It was soon followed by the onset of Bell's palsy, which spontaneously resolved itself by about 80% in a few weeks. Mild dysfunction remains to this day. Some symptoms (earache, headaches, hypertension) preceding this 2001 episode seem to be recurring now.Last edited on Fri Mar 27th, 2009 00:10 by luxman
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microscopic colitis(?), 24/7 dizziness, cough, tinnitus, etc. progressing since 10/2008. | 25D: 14.5 (02/2009) | Started Olmetec on 21/3/09. Started Mino 25mg 28/3/09, 50mg 7/4/09, 75mg 3/5/09. Current meds: Olmetec 40mg Q6H, Mino suspended
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Chris
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Posted: Fri Mar 27th, 2009 01:46 |
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Other than matching the specific colors of your various discharges, I've encountered most of those symptoms, though I don't think I ever listed them in such detail. The joint and muscle pains weren't in the very same places. I think I saw them over a much longer time span, so no single one ever raised a flag.
And what I didn't have (hypertension, heart racing), my wife did.
What I got that you didn't was a diagnosis. Luckily that's no longer a requirement to get better. And I certainly would not wait for it, I got my 7 or 8 years after the first long hospitalization and disablity outage.
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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luxman
Member
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Posted: Fri Mar 27th, 2009 23:51 |
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Chris, are you suggesting that (a) I may also have sarc, (b) Th1s have all similar symptoms, or (c) diagnosis is irrelevant?
One symptom I forgot to mention is that sometimes my neck gets tired from just keeping my head in position when sitting in a chair and working on a computer.
I'm hours away from starting the mino... It's almost 1 a.m. over here, and I decided to start it in the morning. I want to be awake. I also had a few drinks tonight, and I don't want to mix my first mino with alcohol.
Thanks for coming along for the ride... See you all tomorrow! 
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microscopic colitis(?), 24/7 dizziness, cough, tinnitus, etc. progressing since 10/2008. | 25D: 14.5 (02/2009) | Started Olmetec on 21/3/09. Started Mino 25mg 28/3/09, 50mg 7/4/09, 75mg 3/5/09. Current meds: Olmetec 40mg Q6H, Mino suspended
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Barney
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Posted: Sat Mar 28th, 2009 00:45 |
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Lux,
I always took my abx about 2 hrs before going to bed, so that hopefully the herx would hit while I was asleep. (Most of the time it worked good).
IMO, it would make no difference what your diagnosis is, you are going to recover on MP.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
____________________
Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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matthew.gatenby
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Posted: Sat Mar 28th, 2009 06:47 |
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goodluck luxman ....
all the best ... dont stress just take it easy..
oh btw... tetracycline family of antibiotics is not effected by alcohol.
its the old school penicillin based antibiotic , amoxil etc...
so .. heres to having the odd drink .
however beer is off the list .. still leaves you some choices 
wine , clear spirits ... etc etc
Last edited on Sat Mar 28th, 2009 06:50 by matthew.gatenby
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luxman
Member
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Posted: Sun Mar 29th, 2009 14:06 |
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So took my first Mino on Saturday noon.
Well, my symptoms have always fluctuated, with better times and worse times... And they are doing the same now, so I can't really say there's any noticeable difference.
5 hours after taking that one half of a minuscule pill, I started feeling a bit worse. I was dizzier, and I began to feel back pain all over. Also some headaches, and various little things that have been coming and going for months.
I can't really tell whether or not this was a reaction to the minocycline.
By the way, it's pretty hard to imagine that such a little dose of anything would do anything at all... But apparently it has cured countless people.
I'm still worried that this won't work, and I have something else... But then what other disease would cause all of these symptoms?
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microscopic colitis(?), 24/7 dizziness, cough, tinnitus, etc. progressing since 10/2008. | 25D: 14.5 (02/2009) | Started Olmetec on 21/3/09. Started Mino 25mg 28/3/09, 50mg 7/4/09, 75mg 3/5/09. Current meds: Olmetec 40mg Q6H, Mino suspended
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bobsyouruncle
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Posted: Sun Mar 29th, 2009 17:10 |
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Dear Luxman
It is quite an adventure starting this protocol. I expected something major to happen and waited for what I thought would be a big reaction. There was a reaction, but it was mild. About 2 weeks later I got some bigger IP. So I just want to say, I think our expectations are part of the process of starting something new. We're anxious to see what happens. At the same time, as I am sure the long-term MPers would point out, this is a long, long process.
All the best. Glad to see you taking the plunge with us.
Bob
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Sarcoidosis 2000. Sjogrens. Pituitary adenoma. Insomnia. Arthritic/muscle pain. Fatigue. DDD? Skin. D25Jan09 22.7, D25Nov09 18.8, D1,25 67.7 Jan09. Ph1 2 March 09. Ph2 9 May 09 NonMPmed: Lexapro. Ambien. NoIRs. Light/sun limited.
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luxman
Member
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Posted: Sun Mar 29th, 2009 21:13 |
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Thanks for all the responses, Barney, Bob, Chris, Matt (alphabetically). It's so reassuring to see that I'm not on my own. Even though I've "only" been ill a few months (and that's nothing compared to what most of you had to go through), it's great to see that there are answers, and there are people who can and will help. Your support cannot be overestimated. Thanks again.
Right now (about 34 hours after my first-ever Mino), I have a sore throat and a temperature of 37.5ºC (99.5ºF), which is higher than the low-grade fever I usually run. My right tonsil and, to a lesser extent, my right submanibular gland are sore. I also have some nondescript upper back pain.
Well, I want to have IP. And this looks like IP. So I'm glad.
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microscopic colitis(?), 24/7 dizziness, cough, tinnitus, etc. progressing since 10/2008. | 25D: 14.5 (02/2009) | Started Olmetec on 21/3/09. Started Mino 25mg 28/3/09, 50mg 7/4/09, 75mg 3/5/09. Current meds: Olmetec 40mg Q6H, Mino suspended
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Chris
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Posted: Mon Mar 30th, 2009 00:45 |
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Chris, are you suggesting that (a) I may also have sarc, (b) Th1s have all similar symptoms, or (c) diagnosis is irrelevant?
b) and c).
There's a lot of overlap between TH1 diseases in terms of symptoms. It's also not unknown for the diagnosis to change, for example from fibro to lupus, or lupus to sarcoid.
The diagnosis as to specific auto-immune disease isn't as important as that it is auto-immune. For example, diabetes can come from physical damage to the pancreas, as in an auto accident.
--Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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luxman
Member
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Posted: Wed Apr 1st, 2009 21:57 |
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OK, time for an update.
I've taken 25mg Mino three times so far. I'd be lying if I said that I see any dramatic changes or obvious signs of IP. My symptoms do fluctuate, but they have always done so. What's kinda new is the return of some joint/bone pains which used to bother me a few months ago when exercising – now they are here in a milder version, they come and go, even though I haven't done any sports in at least two weeks (which I hate).
I noticed that light from a computer screen does make me feel worse, so I try to use shades for that, and they help. This also started weeks before the MP. Strangely enough, sunlight does not bother me at all. I'm covering up now, though, in order to avoid too much vitamin D.
I noticed horizontal ridges on my fingernails for the first time ever. I hear they are a bad health sign. (There are also vertical ones, but they have been there for a while.)
I'm making a crude spreadsheet with my symptoms so I can track changes daily.
It is possible that my forgetfulness (especially concerning names) is getting a bit worse. I've always had this, but it has been worrying me for the past year or so. My mother complains of the same thing.
If I really want to try very hard and find a pattern, then perhaps my symptoms do get worse about 5-12 hours after my Mino. Twice I've had insomnia, which I was certain I'd never have. (I only have it when my lower legs hurt... Shin splints... Which they do now. Weird how things show up from my childhood, though perhaps I'm just imagining all of this, as I really want to herx, and I cling on to every straw, trying to prove to myself that I am experiencing IP, so I'm on the right track... Which I really do want to be.)
And if I really, really, really want to push it, I might even say that once or twice after the Mino, my usual symptoms felt different. Not better or worse, but... Different. The sensations might have been a bit altered. Sharper pains instead of dull aches, or vice versa. Of course, I want my symptoms to be different; I want them to mean that I'm getting better, not that the disease is simply progressing. So this, again, is not a reliable observation.
Also, I feel that I have stomach acid if I don't eat for a while. As I've had a globus feeling for a while, and an ENT doctor looked at my pharynx and suspected GERD, I'm not so surprised. But I've never had the acid feeling, only the globus and the cough. The acidity came after I started the MP meds.
Is GERD also a Th1 thing?
Come to think of it, I did use to have lots of bad heartburns when I was in primary school. I had to take sodium bicarbonate, otherwise I'd suffer for hours. Then I didn't have that any more for at least two decades. Again, looks like "remembrance of ailments past."
I'll take a fourth 25mg Mino this Friday, and unless I experience something extreme, I think I'll move up to 50 mg on Sunday. Any comments?Last edited on Wed Apr 1st, 2009 22:15 by luxman
____________________
microscopic colitis(?), 24/7 dizziness, cough, tinnitus, etc. progressing since 10/2008. | 25D: 14.5 (02/2009) | Started Olmetec on 21/3/09. Started Mino 25mg 28/3/09, 50mg 7/4/09, 75mg 3/5/09. Current meds: Olmetec 40mg Q6H, Mino suspended
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Barney
Moderator
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Posted: Wed Apr 1st, 2009 22:12 |
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Lux,
Sounds to me like you have had some mild IP's and that is nice. IP's shoud be kept mild, if at all possible.
Moving up to 50mg is the idea for when IP's are mild or nonexistant.
HANG IN THERE, WE WILL MAKE IT!!!!BARNEY
____________________
Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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luxman
Member
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Posted: Thu Apr 2nd, 2009 16:00 |
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Thanks, Barney.
I had some lab tests this morning, and some of them are already back. Creatinine is still high at 1.4, just like in late February (before starting the MP).
GFR, however, has changed for the worse. It's no longer normal, down from 60+ to 58, as measured by the same lab (using the same MDRD formula, so apparently some measurements other than creatinine must have changed, as creatinine has remained stable). Using the simpler MDRD formula based on creatinine, age and sex only, I calculated my GFR at 61.65822, a very low borderline normal reading.
I will wait to see how my doctor reacts. I may need to refer him to the literature available here discussing kidney issues, or ask him to consult Dr. Marshall himself. I guess more tests and regular testing are in order.
I can't say I'm very happy, or that I'm not scared. Maybe I can even interpret these negative changes as evidence that the MP is working for me, but I've only just started it. I really want to believe, and all the pieces seem to fit, but I just can't relax and reassure myself that it's all good. I hope it will happen, and I hope it will happen reasonably soon.
By the way, my kidney issues had started earlier. My creatinine has been a high normal/low abnormal since at least 2005 (the first time it was tested); and last October, it was already 1.2.
In other news, my calcium is stable at a high-mid-range normal 9.7 mg/dl, phosphorus rose from a low normal 2.7 mg/dl to a slightly higher normal 3.0, my parathormone is a normal mid-range 39 pg/ml, and my glycemia is a low-mid-range normal 83 mg/dl.
I'm still waiting for the result of the 1,25 D test. I asked them (Ketterthill labs) beforehand, and they said that clotting at room temperature for half an hour before centrifuge, then freezing, and transporting on ice are all parts of their standard procedure.
Of course, since I've been on Olmetec for almost two weeks, the results may be less than indicative of what levels I might have had before starting treatment.
Last edited on Thu Apr 2nd, 2009 16:20 by luxman
____________________
microscopic colitis(?), 24/7 dizziness, cough, tinnitus, etc. progressing since 10/2008. | 25D: 14.5 (02/2009) | Started Olmetec on 21/3/09. Started Mino 25mg 28/3/09, 50mg 7/4/09, 75mg 3/5/09. Current meds: Olmetec 40mg Q6H, Mino suspended
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Sallie Q
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Posted: Thu Apr 2nd, 2009 22:03 |
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Dr Marshall replied yesterday on another thread
“
The most basic reading you can do is to be familiar with the presentations I have given recently..
I gave a presentation on the Clinical Aspects of our discoveries at the West China Hospital. The video of the seminar is at:
http://www.vimeo.com/2599416
and a transcript is available at http://AutoimmunityResearch.org/transcripts/WCH_2008_seminar_transcript.pdf
It talks in detail about kidney immunopathology.”
[see pages 6-7 of the pdf] Regards S
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Sjogrens; b.cancer; postviral fatigue| D25was13.2ng/ml@ph1-Sept08 |Nov08mod.ph2 /Feb09ph2/ May09ph3| D25 7ng/ml@Jun10 | http://mp-lifestyles.org/category1/ | for recipes, menus, clothing tips, discussion of various MP issues...
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luxman
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Posted: Sun Apr 5th, 2009 18:42 |
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| Thanks, I read it. I hope I have no reason to worry... Even if my kidney problems started before the MP.
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microscopic colitis(?), 24/7 dizziness, cough, tinnitus, etc. progressing since 10/2008. | 25D: 14.5 (02/2009) | Started Olmetec on 21/3/09. Started Mino 25mg 28/3/09, 50mg 7/4/09, 75mg 3/5/09. Current meds: Olmetec 40mg Q6H, Mino suspended
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luxman
Member
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Posted: Sun Apr 5th, 2009 19:13 |
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Just a quick update. Thursday and Friday were very sunny days, so I decided to cover up, garnering strange looks from passers-by.
I now think that I am experiencing immunopathology. My joints are painful, as they were a few months ago (when I dismissed them as results of inadequate stretching before and after sports), except that I have been inactive for weeks now, and back then, I did sports four to six days a week. Shin splints and similar sensations in my lower arms are also new.
I took Mino on Friday, and my reactions seemed pretty mild. So I had a dilemma: shall I increase the dose to 50mg on Sunday, or shall I keep it at 25? If my IP gets stronger, this may not be the best time for it, as I will travel next week, even drive hundreds of kilometers... and also, I'll be visiting and staying with family and friends, so I should be in a presentable state.
But then if I don't ramp now, then I won't really be able to for a whole week: I definitely don't want to have scary symptoms when I'm staying with my family (who don't even know that I'm ill).
So I have a question: what's worse, increasing the Mino dose prematurely, or staying on the same dose for too long? My intuition says the former is worse, so for now I've stayed on 25 mg.
I also set a kind of an ultimatum for myself: if I feel good on Saturday (i.e. one day after my mino), then that's probably a sign that my IP has been mild. Sure enough, I felt great yesterday. Almost all my symptoms were weaker than usual; and one of the most alarming recent additions to my symptom list, a strong localized muscle pain around my right shoulder blade (which I sometimes fear is actually something else, not muscle; perhaps lung or some other tissue) simply disappeared altogether. Well, it didn't go away for good, it returned this morning in a milder form, but still: it may be one of the first early signs that the MP is helping me. But it's probably too early to say that.
However, as I played squash today (for the first time after weeks), and also drank some wine, I decided not to experiment with a higher dose, so I stayed at 25 mg.
Well, my diarrhea has worsened... and I cannot really tolerate wine. It gives me a bad headache. This is strange.
Depending on how I feel tomorrow, I might try 50mg on Tuesday, and if I react too strongly, I will go back to 25 for the duration of my trip to family and friends.
After sport, my lower back really hurts. It reminds me how the whole thing started: first, it was the lower back/joint pains associated with exercise. At one point, I thought my hips were gone for good, and I'd need replacement surgery, they felt so bad. With some rest, they healed, though.
Then I thought I had sports hernia: a strange "something's wrong in there, but don't really know what it is" kind of feeling in my groin, also associated with exercise. Then, GI problems started: I even wondered at the time how sports injuries or wear and tear can cause problems in the intestines.
And then, finally, it was the onset of the constant IBS coinciding with 24/7 dizziness that really scared me, at that time not even connecting any of the dots.
Does anyone have similar experiences? Can something that appears to be a mechanical, musculo-skeletal problem suddenly spread to other systems in the same region? It's almost like I had/have a "general abdominal/groin disease," affecting my joints, muscles and organs down there.
Btw., I had an abdominal CT done which came back clear (to my huge relief, as I was almost expecting to see cancer spread all over the region, causing all my symptoms). I also had a colonoscopy, which looked perfectly normal, but the biopsies did pick up some very minor lymphoplasmacytic infiltration in the colon.
____________________
microscopic colitis(?), 24/7 dizziness, cough, tinnitus, etc. progressing since 10/2008. | 25D: 14.5 (02/2009) | Started Olmetec on 21/3/09. Started Mino 25mg 28/3/09, 50mg 7/4/09, 75mg 3/5/09. Current meds: Olmetec 40mg Q6H, Mino suspended
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Barney
Moderator
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Posted: Sun Apr 5th, 2009 20:20 |
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Lux,
If you find you are having high IP's while you are with your family, you can take Mino daily which will slow the bug killing (and IP's) but won't stop it bug killing entirely. You could also take a little xtra Benicar.
Have a great trip and a wonderful time with family!!!
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
____________________
Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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Chris
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Posted: Sun Apr 5th, 2009 23:02 |
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"general abdominal/groin disease,"
Now you are getting to an important understanding. TH1/auto-immune disease is "general". Sarcoid and lupus are termed "systemic" by the docs, but they seem to recognize that feature only in the abstract.
I noted along the way that my family was thinking I was nuts to treat each new pain as a herx. But they all responded to benicar as if it were herx, and the same is happening to my wife who's now on the MP.
When I got lower back pain, it responded best to drinking more & a hot pad. It also tended to correlate with higher creatinine & bun levels, so if you can, it might pay to control or prevent that particular herx before blood tests to not scare the medical folks.
Chris
____________________
sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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luxman
Member
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Posted: Wed Apr 8th, 2009 14:24 |
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Hi All,
Just a quick update. Yesterday I decided to up Mino to 50 mg. Even before that, I woke up with increased dizziness, so I really can't tell what's IP and what's not. Still no clear herxing pattern with any correlation with taking the abx.
My 1,25D test came back. It's 45 ng/l (which is the same as pg/ml, unless I'm really stupid and/or brain-fogged).
The lab range over here is 25 to 66, but I know that 45 is considered high by Dr. Marshall. Also, I was already on Benicar at the time of the test.
I guess this more or less confirms Th1 disease.
I find it funny how my previous doc, seeing my low 25D levels, was going to start me on massive vitamin D supplementation. Well yeah, so if I'm "deficient," then why is my active metabolite in the high range??
____________________
microscopic colitis(?), 24/7 dizziness, cough, tinnitus, etc. progressing since 10/2008. | 25D: 14.5 (02/2009) | Started Olmetec on 21/3/09. Started Mino 25mg 28/3/09, 50mg 7/4/09, 75mg 3/5/09. Current meds: Olmetec 40mg Q6H, Mino suspended
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Sallie Q
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Posted: Thu Apr 9th, 2009 03:00 |
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luxman wrote: ......... confirms Th1 disease.
I find it funny how my previous doc, seeing my low 25D levels, was going to start me on massive vitamin D supplementation. Well yeah, so if I'm "deficient," then why is my active metabolite in the high range??
good question
____________________
Sjogrens; b.cancer; postviral fatigue| D25was13.2ng/ml@ph1-Sept08 |Nov08mod.ph2 /Feb09ph2/ May09ph3| D25 7ng/ml@Jun10 | http://mp-lifestyles.org/category1/ | for recipes, menus, clothing tips, discussion of various MP issues...
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