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Kas
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Posted: Fri Dec 14th, 2007 19:21 |
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Dear MP family,
As many of you know, I have been through a really tough time with the doctors I see for my sarc re them accepting the fact that I want to be on the MP. It took me three years to convince my family physician to follow me, and that she did with extreme trepidation. At first, my very low BP freaked her out, then my liver enzymes going much higher than they usually are caused panic stations, and lastly my declining kidney function on phase 2 abx almost caused her to refuse to follow me on it.
The moderators here were wonderful and I printed up all the links to assure my doc that all I was having was immunopathology (IP), which proved the MP was working, albeit slowly, for me. All to no avail. Then, I was advised to cut the drugs way down and extend the dosage period. Doc starting noticing a pattern - the tests improved or even normalised (well, kidney function did) once the IP period was over. We tried it twice, and yesterday, I heard the words I have been waiting to hear for so long, she saw that my kidney function had come right back into the normal range after a minimal dose and extended period. Her words were like magic to my ears,
" The MP is incredible! It works just as it is written and I am MOST impressed!"
You could have bowled me over! After a week in which my respirologist told me the MP was a dismal failure because " I could not sustain it and look at your pft and added fibrosis - it's pred for you next visit " - I am on such a high that I have never felt better!
So, even although my white and red cell count are now below normal, and my liver remains too high etc, I have doc saying, "Not to worry, I am sure it all an IP reaction - we will keep an eye on things as we move along slowly".
She no longer takes my BP (and nor do I, for that matter), or even listens for crackles in my lungs (which the specialist could not hear this week). We now discuss next steps and even although I am going slower than most, I feel very confident that eventually I will win my battle.
I will be sending my donation to ARF as soon as I get my next pay cheque, and I wish all of you joyous Holiday Season and may 2008 see all of you making excellent progress on the MP, no matter how slowly you proceed.
Again, my sincere thanks and gratitude to everyone who has been so supportive and kind to me as I move along to wellness.
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Knochen
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| Joined: | Wed Oct 17th, 2007 |
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Posted: Fri Dec 14th, 2007 22:47 |
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Kas,
You brought a huge grin to my face on an otherwise very trying day. Thanks for the lift! And congrats to you for sticking with it and getting a doc to come on board, that's just amazing. The evidence does speak for itself when there is an open enough mind to see it. One doc down, 2 grillion more to go...
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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Rico
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| Joined: | Wed Oct 17th, 2007 |
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| Posts: | 110 |
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Posted: Sat Dec 15th, 2007 00:40 |
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Awesome story, Kas! Doesn't it just feel great when a patient knows they've taught an M.D. something related to their own field! Bravo!
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Essential Info; FAQ; ABC's of MP; Side Topics; Perspectives
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Joyful
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| Joined: | Fri Oct 19th, 2007 |
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Posted: Sat Dec 15th, 2007 05:37 |
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Kas,
You are surely going to get to your goal with your persistance!
As for your respirologist... I remember that they had been wrong before (about Sarc going away on it's own) ... but the specialists seem to have the most ingrained attitudes of all.
Great going that your family doctor has begun to understand!
~Joyful~
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Lyme?1980 Babs?05 Bart?05 CFS?06 | 125D50 Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | 25D15 Oct08 | ABC of MP
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jcwat101
Health Professional
| Joined: | Wed Oct 17th, 2007 |
| Location: | California USA |
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Posted: Sun Dec 16th, 2007 03:53 |
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Kas,
Great news! And it also goes to remind us all that some people (me included) just have to go with even lower doses (in phase two and three) and sometimes longer times between doses.
Not everyone needs or does well with the same pace and we all have to remember that when we see others at higher doses than we are at and increasing more rapidly.
Joyce Waterhouse
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20 years with CFS/FM/Lyme/IBS, mostly recovered from MCS and food sensitivities after 3 years on MP.
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Reenie
Member
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Posted: Mon Dec 17th, 2007 04:59 |
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Kas,
Thanks for sharing! 
Maybe your story will be quoted somewhere in one of the FAQs on the study site. I think it's a great reminder and definitely a success story!
As Knochen says, One doc down, 2 grillion more to go...  
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Kas
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Posted: Wed Dec 19th, 2007 17:24 |
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Ever since my diagnosis with sarc, the lung specialist has me have an annual CT chest scan. She loves comparing the disease progression etc on her office computer. Before my dx, I had a few CT's as well to try and find out what was going on with my spleen.
However, I am not at all happy about all this radiation, given that I also have an annual mammogram, dexa testing etc. I would like to skip the chest CT for another year or even two. I am not going to change my treatment ( hopefully) and my lungs will do what they have to do to get well, in their own time, as will my other organs.
My next CT has already been booked for early June( system here has them booking months ahead), together with a full lung function test. The CT is one these HD fine cut ones which takes about 10 minutes and probably gives you more radiation than a lying in the sun at the beach for a week. If I refust to have it, I will be removed from the practice, which might be a very good idea, anyway!
How often, on the MP, is it necessary to follow up with a CT? I realise it is probably the only way to see what is going on, but why should I put myself at risk by having it done so often? Isn't a pft sufficient to show what is going on?
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Dr Trevor Marshall
Research Team
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Posted: Wed Dec 19th, 2007 18:32 |
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Your concern about radiation is valid. I am currently in contact with a group of nuclear power station workers who have a very high incidence of sarcoidosis. Given that energy is a key ingredient in changing 7-dehydrocholesterol to pre-Vitamin-D I would be very wary giving any sarcoidosis patients even the amount of ionizing radiation normally acceptable to the healthy population.
In this case it would seem that the CT scan results would not change Doc's therapeutic decisions, and therefore am puzzled why Doc would insist on them.
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Kas
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Posted: Wed Dec 19th, 2007 18:57 |
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Thank you so much, Trevor.
Based on your rapid reply, I called the respirologist's rooms and stated my concerns re too much radiation. The receptionist said she would pull my chart and discuss them with the doctor. I am not expecting her to agree with me, though.
Remember, that this doctor is very anti the MP ( she is the one, who just two weeks back told me it was a 'dismal failure' because my previous CT showed more 'fibrosis' after 8 months on the MP, and despite my better spirometry test this time etc etc). She wants to do the CT so that if things are looking worse, I can start with a pred puffer and then move onto more immunosuppressive drugs - or so she thinks!! I fly long distance once a year to see my very ill mother, so I have that added radiation, too. I certainly do not need any more than I have to have. I feel a CT every 2 years is more than enough.
This is my illness, my body and thanks to all of you, I am learning to make the decisions I want for it and not allow some doctor who sees me a comparative case study to do so for me.
Happy Holidays to you and your family, Trevor and to all the MP family.
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Julia
Advocate (on leave)
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Posted: Fri Dec 21st, 2007 22:40 |
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Kas,
You are so wise to avoid unnecessary radiation...
The New England Journal of Medicine (Nov.29) recently reported the average American's radiation exposure has doubled since 1980, largely because of the booming use of CT scans. A patient undergoing an abdominal CT scan receives over 50 times more radiation than in a standard X-ray.
For a more readable synopsis and comment, see http://www.msnbc.msn.com/id/22010076/
Part of the research report says:
Although most of the quantitative estimates of the radiation-induced cancer risk are derived from analyses of atomic-bomb survivors, there are other supporting studies, including a recent large-scale study of 400,000 radiation workers in the nuclear industry who were exposed to an average dose of approximately 20 mSv (a typical organ dose from a single CT scan for an adult). A significant association was reported between the radiation dose and mortality from cancer in this cohort (with a significant increase in the risk of cancer among workers who received doses between 5 and 150 mSv); the risks were quantitatively consistent with those reported for atomic-bomb survivors.
Julia 
See also Assessing lung function
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Always consult a physician
Essential Info; FAQ; Julia's story
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Kas
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Posted: Sun Dec 23rd, 2007 23:13 |
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Thanks everyone for your encouragement.
Now, let's hope my doc remains impressed!! At least, she is not talking pred any longer, as the respirologist still is. I am thinking of leaving the specialist and finding another who might be more amenable to the MP. I am so tired of her sending me for an annual CT, worried about the radiation and, to be honest, sick of her condescending attitude- especially since she has never bothered to read up on the MP. Trouble is, I doubt I will find specialist who is much better here. I asked my MP doc if we could leave a specialist out of the picture all together, but she feels my lungs should be folllowed up from time to time, and that interpreting the data is out of her range of expertise ( family medicine).
For those of you who are struggling to get your docs on board, perhaps if you let them know that the MP can be somewhat streamlined to suit you, they will be more receptive. By 'streamlining" I do not mean changing the meds, but merely increasing/decreasing the dosages and times between the dosages to help manage the immunopathology safely and to ensure that chemistry does not get so out of whack that it scares doctors into following you.
I have found that that by extending the mino to three day dosing, for example, I am better able to function and best of all, my yeast behaves quietly this way, too. Eventually, I may get back to the usual two day dosing, or perhaps not, but for now, it is keeping everyone a lot happier and on track and I am still killing those little terrrorists in my cells!!
Happy Holidays, joyous Christmas etc to one and all here and may the MP work for everyone.
Kas
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Kas
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Posted: Fri Dec 28th, 2007 16:21 |
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Last night, I ate a good few slices of plain, boiled beetroot. I don't usually eat much of it and very infrequently because of its high sugar content. I have to watch that because of my pre- diabetes.
Anyway, this morning, I almost had a heart attack, when I noticed my stool was red, the bowl water was red and so was the toilet paper! As I have a niece who has had colon cancer, you can imagine that I was rather freaked - until I remembered eating the beetroot! Believe me, that stuff can stain anything!!!
Of course, I am going to keep an eye on the matter ( excuse the pun!), but I am quite certain things will be back to normal very soon.
As I am the only one in the family who enjoys beetroot occasionally, I think I will turf the remaining dish out. As it is, it probably contains too much potassium for someone on Benicar (?)
Anyone else ever experienced this?
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Knochen
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Posted: Fri Dec 28th, 2007 17:51 |
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I remember this scaring the hell out of my sister many years ago when she forgot she fed her baby beets. So I guess it happens from time to time.
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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GeorgeinRollaMO
Advocate
| Joined: | Sat Oct 20th, 2007 |
| Location: | Rolla, Missouri USA |
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Posted: Fri Dec 28th, 2007 21:00 |
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Yep! It has happened to me, too, that beets color 'matter' (pun intended). 
But the warning given to the unwary is a good one!
Wishing all wellness!!! 
Dark Vader...aka, George
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Borreliosis (but really Th1 inflammation). Start D values, July '04, 125D/57, 25D/61...over supplementation with D (fish oil).
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Kas
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Posted: Tue Mar 25th, 2008 17:49 |
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Please don't shoot me down for asking this, but I just wondered about it...
I have been avoiding the sun/light quite fastidiously, for about 5 years now. My D levels, which were initially high, have been in the perfect MP range for long time now, and both come back in the most deficient range on the bloodwork. In fact, my 25D is now so low, that it can no longer be read!! My 1,25 D also falls below normal levels, which does not worry be on the MP, but should I be adding a little D food now and then or not?
Whilst I know that my progress on the MP has been slow, and due to my own circumstances, often erratic, I do understand why folk with TH1 illnesses do not need a vitamin which converts into a steroid hormone in their bodies, I just wondered if there is a point when we do need to add some back via diet/ light/ supplements - or do we never need it again, or only when we are in remission or cured? Does the length of time we have with low to next to nothing D levels not make a difference, as long as we are on the MP, or do we always keep them in the below normal range to stay well?
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Dr Trevor Marshall
Research Team
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Posted: Tue Mar 25th, 2008 18:04 |
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Kas,
The body makes all the Vitamin D it needs. Take a look at figure 1 in my latest paper to see the multiplicity of control mechanisms the body has in place to do that.
In any case, I personally stayed away from direct-sun and Vit D foods for 5 years, and my recent bone density test came back right at zero, perfectly normal.
..Trevor..
ps: It is hard to ignore all those idiots out there isn't it I always say that when they can at least figure out how to arrest osteoporosis, they will become worth listening to...
pps: Have you seen Amy's recent articles on this issue at http://Bacteriality.com ?
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Kas
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Posted: Tue Mar 25th, 2008 18:30 |
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Thanks for your reply, Trevor.
I have just finished reading the article posted on Amy's site,and yes, the views expresed make perfect sense. I can ignore all the D pushing appearing all over the place, but it seems that everyone else ( including medical folk) cannot. The ones who hear I have avoided D for so long, keep warning me that I might well cure my sarc, but who is to say I won't succumb to all the other dread diseases D is supposed to prevent, they keep arguing. I respond that I will take my chances. I know know folk who got colon cancer and MS and who had more D from the sun than most could imagine, so go figure. It probably all boils down to which genes you were blessed or cursed with in life.
My last bone density test, done after 4 years of sun/D avoidance also came back in the normal range, so that was most heartening and blew my doc away! My June 07 mammogram was normal ( and I have the most dense of breast tissue, so it does concern me) and best of all, at the age of almost 53, everyone tells me I don't look more than 40!! No crepey neck, not too many wrinkles ( thanks to no sun to dry me out!) and despite no exercise at all of late , a healthy BMI and still a size 8- 10, with normal sugar levels, despite being diagnosed pre- diabetic. I have to admit that I look a lot better than most of my friends and colleagues of the same age - something I attribute to the MP- so thanks for that!!
However, can I at this point, if IP is not too bad, have a little more light and the occasional D food treats ( say a bit of white fish now and then), than I did in my early MP stages, or should I still be totally vigilant given my kidney and liver IP's etc?
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Dr Trevor Marshall
Research Team
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Posted: Tue Mar 25th, 2008 22:14 |
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However, can I at this point, if IP is not too bad, have a little more light and the occasional D food treats ( say a bit of white fish now and then), than I did in my early MP stages, or should I still be totally vigilant given my kidney and liver IP's etc?
Kas, Photosensitivity is just that, photosensitivity, and it will gradually disappear with time. You need to keep an eye on your general IP and make sure you are progressing on-track to recovery, but otherwise, when you can enjoy the outdoors again, it is a good idea to do so. A little at a time.
Ingested Vitamin D is not something I would suggest, however, until your endogenous 25-D starts to regulate itself into the teens. That is likely to be 5+ years into the MP. Obviously, if there is nothing else to eat, then you have no choice, but, when given the choice, you should opt to continue staying away from mushrooms, fish, etc, until you are well beyond the risk of relapse.
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Kas
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Posted: Sat Apr 26th, 2008 02:03 |
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I teach high school students from many different countries.
Today, one of my students told me he had TB. I can only presume it is not active, or he would ( I hope) not be allowed to be at school.
Would the MP offer any protection from TB, should he be infectious? I spend about three hours of my day in his classroom, which is poorly ventilated. I have not heard him coughing and he appears healthy looking. Had he not volunteered this information, I would never have known. He is not on any treatment at present.
Is it necessary for me to have a TB skin test? I had one many years ago, which was negative and have not had it repeated since.
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Dr Trevor Marshall
Research Team
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Posted: Sat Apr 26th, 2008 11:07 |
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Nope.
Your immune system is functional now. Someone else may get sick, but you should be fine.
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