 |
| Author | Post |
|---|
Bones197828
Member
|
Posted: Thu Oct 9th, 2008 18:04 |
|
Hi everyone. I was diagnosed back in March of 02 with stage four Sarcoid. I was placed on pred. 80 mg for about 6 - 8 months. I was told that I was in complete remission. (Lies) I have come to this site for help. I am reading all that I can and I am sadden to say that I am just as comfused as I was over five years ago when I stubbeled across the MP. (Has it been that long really???)
Okay, here is the deal, since being diagnosed I have been labeled with a multitude of other illnesses. I have just recently been told that I have Degenerative joint disease in my foot, and DDD (Degenerative Disc Disease) of the lower back and have bone narrowing. I have to go in and get my hands checked as those too are hurting me. I am sure that they will label me with something very similar if not the same as above. I need to know if the MP will cure me of all this. Is it worth going on?
I brought this up to my doc back in 03 and was denied. I printed Trevors paper work off and gave it to her to read over and again denied. I don't want to live this way. I am tired of it. I hurt all the time and can not stop crying. I am afraid that I am going to die because of it. I am a single mother and living for my child is all I want. I need a list of doctors that will help me. I want to know that this is going to all go away and I can go back to LIVING. I see now that I need to update my signature to reflect all of my illnesses. I will do that after I post this.
I actually called and spoke to Trevor himself just about a week ago. I was a emotional mess. I couldn't even form a sentence let alone a question. I was flabergasted that Tevor answered the phone. WOW!!! How is that for dedication. I wish I would have been able to talk and get some answers and direction when I had the chance.
I don't want to say that I am Academically challenged but I really have issues when it comes to processes if they are not put out in a 1, 2, 3, order I have a hard time understanding what to do. So if anyone is to respond please assist me in that order. It would save us both so much time. Here is a list of what I can remember that I have:
Sarcoid, Fibro, Tietz, IBS, DDD, Degenerative Joint Disease, Depression, PTSD, Anxiety, and I think that is it. I would have to call my doc to get all the labels.
I look forward to talking to many of you. Take care and GOD Bless!
Added note: Some how I have 2 accounts. the last time that I posted was July 20, 2007 I am not sure how this happened. I knew I had an account but was unable to log in. I re-registered with the same info and name and pass word and was able to log in but upon doing so I was able to open 2 different accounts. Very strange. I only type this because I wanted to inform any administrators that this is going on and I am the same person. thanks.
____________________
40 MG Benicar 12/29/08 25 Mino 1/3/09
Sarcoid 2003, Fibro, Tietz, IBS, DDD, Depression, PTSD, Anxiety, Acid Reflux, Stomach Ulcers, Tintitus, PCOS
When the power of love surpasses the love of power, this world will know peace
|
Julia
Advocate (on leave)
|
Posted: Thu Oct 9th, 2008 22:54 |
|
Hi Jamie,
Glad you found your way back to us! We'll do our best to help you in as clear a way as possible - we've nearly all had brain fog here, and it's nothing to do with being 'academically challenged' - anyone can get it.
You did very well to print out Dr Marshall's papers and present them to your doc. What a pity she wasn't more open-minded to new research.
I see you've posted in the right forum to ask for a doctor list. Let's hope you can find someone more co-operative who's willing to prescribe the MP for you.
I suspect that all your symptoms are related to your sarc, and the MP will eventually take care of them all, but I'm not a medic. I just know that on the MP the most amazing things happened to me, with things resolving that I had no idea were sarc-related.
But the MP is not an easy ride, and you have to be prepared for the immune system reaction as it kills the bacteria. But there's all the difference in the world between feeling poorly when you know you're getting worse, and feeling poorly when you know it's only temporary, because you're getting better 
I'm sure you've already been doing a lot of reading in the MP 'library' on the main site MarshallProtocol.com, but I know how confusing that site can be. Please see the Advocates here on this sister site (CureMyTh1.org) as 'librarians' to help you find the info you need, if doing a search doesn't find it.
Here are links to some of the most important stuff - each one opens in a new window so you don't lose your place:
Simple Explanations
Phase1 guidelines
FAQs Easy Finder & the ABC of MP - use with the search facilities to find information. How to do a site search
Essential Information About the MP - take this a little at a time!
Bacteriality - a readable blog-style website by one of our members, with science-made-easy articles, an introductory 90-minute video, and interviews with recovering patients - an excellent introduction to the MP.
When you start the MP, you can post in the forum Non-medical support for those on MP.
Please ask any further questions here at your own personal thread by hitting the Reply button. If you lose this thread, click on 'My Account' at the top of the page and the link will be there
Julia 
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
|
Bones197828
Member
|
Posted: Fri Oct 10th, 2008 15:07 |
|
Julia, Thank you so much for responding to me. I can not thank you enough. I am so happy about all of this it makes me cry! I see a light at the end of the tunnel and to tell you the truth I was beginning to wonder if there was ever going to be light.
I found a doc in my area that does the MP but he is not accepting new patients. Which is okay cause after some of my reading it looks like I need to get off of my Xanax before I start this healing process. That alone will take me a good 3 - 4 months. I also need to be in a home were I will have help raising my child as I am a single parent. So I have a few things that need to get done prior to my participation in the program.
I read your story and it sounds as if you are still on the MP and it has been 4 years? So, I am looking at a very long time of being on meds, but does that mean I am going to be very ill for that long too? How long were you really ill in the beginning?
From what I can gather the first phase is going to be really rough but for the most part short lived and the next two phases are not always going to be pleasant but better. Is that fair to say? I am just so happy to finally have support and information and FINALLY the KEYS to drive this freaking disease out of my body and for good!
My brother too, has a strange inflammatory illness that they can not label and haven't been able to for years now. I am hopful for him now too. I know that he will not just jump on the band wagon and that is okay, cause after seeing me get better I know that he will want to do the same.
My goodness, I have been sick for, going on 7 years......and that is just being labeled. I was sick long before they labeled me. I knew when I was a little girl laying in the bath tub that there was something wrong inside my body. I KNEW it but of course who is going to believe an 8 year old?
I want to jump up and down, I am so happy. I just really hope that this doc calls me back and lets me know that he will accept me so I KNOW that I will keep going forward. At the rate my body is going now I was / am having a hard time seeing me live past 50. that is TOO young! I want to be here for my child as long as I can and when I die I don't want it to be painful. Well, as painless as one can have it when they are leaving the world. Without this help I know my outlook is bleak.
Thank you again, Julia, for responding to me. I hope to have many more conversations with you. Take care and God Bless You!
[white spaces added to make more readable - mod.]
____________________
40 MG Benicar 12/29/08 25 Mino 1/3/09
Sarcoid 2003, Fibro, Tietz, IBS, DDD, Depression, PTSD, Anxiety, Acid Reflux, Stomach Ulcers, Tintitus, PCOS
When the power of love surpasses the love of power, this world will know peace
|
GeorgeinRollaMO
Advocate
| Joined: | Sat Oct 20th, 2007 |
| Location: | Rolla, Missouri USA |
| Posts: | 331 |
| Status: |
Offline
|
|
Posted: Sat Oct 11th, 2008 05:00 |
|
Jamie,
Julia has given you some good advice!!! I would like to add something else for you.
However, remember that I am not God, so cannot be positive about this information beyond all doubt, but it sure looks good from what Dr. Marshall has learned.
Start thinking of your illness as a soup or stew of pleomorphic and/or biofilmed bacteria creating a soup or stew of symptoms. And, that on one particular day in your life, a doctor saw one particular set of symptoms that doctors see as the illness they have given the name of sarcoidosis. On another day, another doctor may see another set of symptoms that they have labeled by a different name. However, all the various symptoms or sets of symptoms are really caused by the one troublemaker... a soup or stew of those bacteria mentioned above. That soup or stew can vary from one individual to another, or, even within one person from time to time, as the person takes on more or less of these special type of bacteria. So our symptoms from the one cause can vary. The idea that one bacteria causes one disease is very out-of-date with the learned knowledge about chronic illnesses.
You do not really have many diseases! Just different sets of symptoms of the one cause.
This way of thinking may help you to relax knowing that it is only one cause rather many causes. The treatment is the same for all of the various symptoms or sets of symptoms.
Wishing you, and all, wellness!!!
Dark Vader...aka, George
____________________
Borreliosis (but really Th1 inflammation). Start D values, July '04, 125D/57, 25D/61...over supplementation with D (fish oil).
|
Bones197828
Member
|
Posted: Mon Oct 13th, 2008 21:44 |
|
Hi, I have been seeing little about what my diet is suppose to be.? I know that I need to cut out the Vit D. but there has got to be more to it than that right?
Also, if anyone on here lives in MN can you please tell me who your doctor is? I requested the list and called the docs on there but one is no longer practicing and the other is not taking new patients and the 3rd is way to far away from me.
Thank you so much in advanced for responding to me. I am looking forwarded to be healthy and ALIVE!
God Bless.
____________________
40 MG Benicar 12/29/08 25 Mino 1/3/09
Sarcoid 2003, Fibro, Tietz, IBS, DDD, Depression, PTSD, Anxiety, Acid Reflux, Stomach Ulcers, Tintitus, PCOS
When the power of love surpasses the love of power, this world will know peace
|
Julia
Advocate (on leave)
|
Posted: Mon Oct 13th, 2008 21:51 |
|
Jamie, please look in the FAQs Easy Finder & the ABC of MP which is in alphabetical order, and go to FOOD. It has links to all you ever wanted to know about diet, and then some 
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
|
Bones197828
Member
|
Posted: Tue Oct 14th, 2008 18:24 |
|
I am going to try and talk my doc into helping me with this. As I am having a very difficult time finding anyone else to help me.
What I was hoping for is there someone here who has some paper work that I can print out and bring to my doc to help persude her? I know I have seen something like some where I just can not remember.
Thanks, all for your help.
God Bless
Jamie
____________________
40 MG Benicar 12/29/08 25 Mino 1/3/09
Sarcoid 2003, Fibro, Tietz, IBS, DDD, Depression, PTSD, Anxiety, Acid Reflux, Stomach Ulcers, Tintitus, PCOS
When the power of love surpasses the love of power, this world will know peace
|
Julia
Advocate (on leave)
|
Posted: Wed Oct 15th, 2008 00:40 |
|
| Jamie, the details are all in the topic Suggestions To Get Your Doctor On Board With the MP.
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
|
Bones197828
Member
|
Posted: Wed Oct 15th, 2008 14:32 |
|
Thank you so much Julia! I really appreciate all your help that you have been giving me since coming back to this forum.
God Bless.
Jamie
____________________
40 MG Benicar 12/29/08 25 Mino 1/3/09
Sarcoid 2003, Fibro, Tietz, IBS, DDD, Depression, PTSD, Anxiety, Acid Reflux, Stomach Ulcers, Tintitus, PCOS
When the power of love surpasses the love of power, this world will know peace
|
Bones197828
Member
|
Posted: Wed Oct 15th, 2008 17:11 |
|
HI I have a question about my child. I am now going through all her chest x-rays and I just NOW found out that she has RAD (reactive airway disease) In just a years time There ismarked airway thickening, worsened compared to 9/13/07 chest film. I know that this is a TH1 issue. My question is do I need to inquire about the MP for her too? How serious is this? I ask here cause the doctors always say that it is nothing to worry about. Kind of like how they did when they told me I had stage four Sarcoid. Any insight would be greatly appreciated. I am researching it on the net, but like I said any other insight will be appreciated. Thanks, Jamie
Oh, by the way is it okay that I ask this question here?
____________________
40 MG Benicar 12/29/08 25 Mino 1/3/09
Sarcoid 2003, Fibro, Tietz, IBS, DDD, Depression, PTSD, Anxiety, Acid Reflux, Stomach Ulcers, Tintitus, PCOS
When the power of love surpasses the love of power, this world will know peace
|
Julia
Advocate (on leave)
|
Posted: Wed Oct 15th, 2008 17:27 |
|
| Please see Can children be treated with the Marshall Protocol? which includes tips on how to know if the MP is appropriate for your child.
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
|
Bones197828
Member
|
Posted: Mon Oct 20th, 2008 16:16 |
|
HI everyone. This weekend was the worst. I was stuck in a wheel chair not able to walk any real distance any where. Walking to the bathroom was hard enough. I was forced to go to my mothers house for an entire day and a half cause I was unable to properly care for my child.
MY little girl has been drawing pictures of me in bed crying and telling me through her tears that "Mom this is too hard, I can't take care of my mom, I am only 5". REALLY is this what my life has come too?
My mom doesn't support me when it comes to doing the MP and I have no one else that will support me with this. My doc doesn't think that it will work. I am just sitting here bawling my eyes out. I am not asking for much I am just asking for a "Probe". I mean really what is the harm in it? I have done everything else my doc has asked me to do and when I ask for this one thing that I believe will help she says no. I have been on worse drugs over the years, why when I ask for something that is realivly simple i get a no?
I was referred to a Immunologist, does anyone think that they will help me?
My mom tells me that I need to accept that my life and health are what they are and just work around it. I DO NOT WANT TO DO THAT. I am 30 years old and I have always been athetic, I am not willing to just ACCEPT this. It is not fair to me or my child! I am all she has and vic versa.
What am I doing wrong? What am I missing? I have all the material and for the most part I GOT IT! I know what I need to do when on the protocol and I am taking all the steps that I need to. Why are there so many docs that just don't want to do this? WHY????
I was told today to go to the Mayo Clinic which I will! But dang it, I don't want to go there just to be told what I already know. I will go if they can really help me. I have been sick for 6 years (actually longer but dx for the last 6 years) I know what I have. I have followed everything they have told me to do, with the exception of going to the pain clinic. I don't want to go to a pain clinic so they can just give me pills! This is not what I am looking for. I WANT MY LIFE BACK. I want to play with my little girl. I want to lift her up and hug her. I want to rough house with her out in the fall leaves. I want to be able to go on a freaking walk with her. Is that really to much to ask?
I am totally venting her, only cause you all know what I am talking about and you all believe me. When I talk to others they look at me and think " oh yeah right" I just want to say, " just cause my skin isn't falling off of me doesn't mean that my life isn't in real trouble." My insides are dying and it HURTS, not just physcially but emotionally this is killing me. For any of you who have children know the pain that one feels when you are seeing and hearing the effects that your health has been having on your child.
Please anyone who has anything at all to say about my situation I will appreciate it. I just don't know what I am missing here? What steps haven't I taken?
God Bless! Thanks for reading.
Jamie
____________________
40 MG Benicar 12/29/08 25 Mino 1/3/09
Sarcoid 2003, Fibro, Tietz, IBS, DDD, Depression, PTSD, Anxiety, Acid Reflux, Stomach Ulcers, Tintitus, PCOS
When the power of love surpasses the love of power, this world will know peace
|
Julia
Advocate (on leave)
|
Posted: Mon Oct 20th, 2008 17:55 |
|
Jamie, please tell your mum from me that there are hundreds of sarcies who are now living normal active lives, because they refused to accept that they just had to 'live with it' (and die early with it). We found the MP, and we fought our doctors, and we won our lives back. Go girl! Find a new doc. Tell the Mayo Clinic what you want. We're rooting for you 
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
|
Bones197828
Member
|
Posted: Wed Oct 22nd, 2008 15:49 |
|
what does this all mean? I am so encredible systomatic but these results don't show anything wrong...???
WBC
7.9
4.0-11.0 k/ul
RBC
4.67
4.0-5.2 M/ul
HGB
14.8
12.0-16.0 g/dl
HCT
41.7
36.0-46.0 %
MCV
89.3
80-100 fl
MCH
31.7
26-34 pg
MCHC
35.5
32-36 %
RDW
12.9
11.5-14.5 %
PLTS
271
150-450 k/ul
PMN/BAND
53
43-72 %
LYMPH
35
17-43 %
MONO
6
4-12 %
EOS
6
0-8 %
BASO
1
0-1 %
PMN ABSOLUTE
4.2
1.8-7.7 k/ul
LYMPH ABSOLUTE
2.7
1.0-4.8 k/ul
MONO ABSOLUTE
0.5
0.1-0.7 k/ul
EOS ABSOLUTE
0.5
0.0-0.5 k/ul
BASO ABSOLUTE
0.1
0.0-0.2 k/ul
ALKALINE PHOSPHATASE
55
34-104 U/L
BILIRUBIN, TOTAL
0.6
0.2-1.2 mg/dl
BILIRUBIN, DIRECT
0.1
0.1-0.4 mg/dl
ALT (SGPT)
13
0-55 U/L
AST (SGOT)
18
<45- U/L
PROTEIN, TOTAL
7.0
6.0-8.5 g/dl
ALBUMIN
4.5
3.0-5.1 g/dl
A/G RATIO, CALC.
1.8
>1.0-
BUN
13
10-26 mg/dl
SODIUM
139
135-145 mmol/L
POTASSIUM
4.7
3.5-5.3 mmol/L
CHLORIDE
105
95-105 mmol/L
CO2
23
22-31 mmol/L
GLUCOSE
86
70-180 mg/dl
CREATININE
0.8
0.6-1.0 mg/dl
GFR, ESTIMATED
>80.0
>60- ml/min/1.73m2
GFR EST IF AFRICAN AMERICAN
>80.0
>60- ml/min/1.73m2
CALCIUM
9.2
8.6-10.3 mg/dl
ANION GAP (CALC.)
11
7-17 mmol/L
C-REACTIVE PROTEIN
<0.1
<0.8- mg/dl
ESR
5
0-20 mm/hr
This Test done in 07 (below)
ANGIOTENSIN CONV ENZ
76
This tests done is 05 (below) Doc will not retest..??
VITAMIN D,25-HYDROXY
23
VITAMIN D,1,25-DIHYD
45
Can anyone tell me what this really means? My doc tells me that they are all fine, but I DON'T FEEL FINE. I was confined to a wheel chair this past weekend. All over pain, my legs felt like they were going to implode. Sharp pains shooting up my neck from my shoulder and then that half of my body would go numb for about 3-5 seconds and then come back. Same thing with my legs but it would start right behind the knee and the shoot down to my toes and then my leg would go numb for about 3-5 second and come back. I was getting clusters of them. Say I would get about 5-10 of them and then not getting any for a couple of hours but then get them again. Lately I have been REALLY sensitvie to lighting. TO the point that it is making me want to throw up, my eyes hurt so bad.
Thanks Jamie.Last edited on Wed Oct 22nd, 2008 18:26 by Bones197828
____________________
40 MG Benicar 12/29/08 25 Mino 1/3/09
Sarcoid 2003, Fibro, Tietz, IBS, DDD, Depression, PTSD, Anxiety, Acid Reflux, Stomach Ulcers, Tintitus, PCOS
When the power of love surpasses the love of power, this world will know peace
|
Knochen
Advocate
| Joined: | Wed Oct 17th, 2007 |
| Location: | USA |
| Posts: | 224 |
| Status: |
Offline
|
|
Posted: Wed Oct 22nd, 2008 16:54 |
|
Please post your Vit D results to the section devoted to that for an interpretation by the medically qualified folks. Help with Understanding D-metabolite tests
In the meantime, have a look at these links.
Why can't CWD bacteria be detected with tests?
Which diagnostic tests do I need?
Believe me, many of us have had the same "you're fine, the tests don't show anything" response from the medical community. The fact is that the average doctor doesn't know what they are looking for when it comes to CWD, so they aren't going to know how to diagnose you properly. So you need to relax and gather your documentation and be the one in charge of your own medical treatment. Remember, the doctor works for you, not the other way around.
If unable to do the blood tests or if they are inconclusive, a therapeutic probe can be diagnostic. See What is a therapeutic probe? This is something you can really push for. If the doc won't even agree to this, then you need another doc.
We know you are sick, and you know you are sick. Your goal is to get treatment whether or not the doctor believes you are sick. If you can get the prescriptions, even grudgingly, then you win. The doc does not have to believe it will work - the facts of the MP remain the same regardless of medical opinion. Once you have run a probe, you'll have all the proof you'll need, at least for yourself, and very probably for your doctor. But you'll need to make it clear that you are taking responsibility and all you want is the Rx and monitoring. Be willing to sign a waiver if that will help. Be professional, not emotional, in your presentation to the doc.
One step at a time. You aren't the first to meet resistance.
____________________
I can help you understand the recovery process, but only your physician is licensed to give you medical care.
|
Bones197828
Member
|
Posted: Wed Oct 22nd, 2008 18:26 |
|
| I tried to post them where you told me to but nothing is showing up.? Did I miss something? I tried to do it twice but it doesn't show on the main page and in didn't show in my account that I have started a new topic.
____________________
40 MG Benicar 12/29/08 25 Mino 1/3/09
Sarcoid 2003, Fibro, Tietz, IBS, DDD, Depression, PTSD, Anxiety, Acid Reflux, Stomach Ulcers, Tintitus, PCOS
When the power of love surpasses the love of power, this world will know peace
|
Sallie Q
Member
| Joined: | Sat Aug 9th, 2008 |
| Location: | Australia |
| Posts: | 56 |
| Status: |
Offline
|
|
Posted: Wed Oct 22nd, 2008 21:44 |
|
You need to post your D tests in the 2nd section of General Questions Here
Help with understanding D-metabolite test
it is after
Ask your Questions in Here
and before
Non-medical support for those on MP
Best …Sallie
____________________
fatigue,Sjogrens 1,25D(??)Phase1:20Sep08 NoIRslowLuxEtc 25D13.2(Jly08)independent PCPProfessionalsForum NoAltMeds appendectomy~9yrs b.cancer1990 some calcification old scans.HotFlush20yrs D-dysregulated~60%signs
|
Julia
Advocate (on leave)
|
Posted: Wed Oct 22nd, 2008 23:27 |
|
| Jamie, you have successfully posted your results at Help with Understanding D-metabolite tests (click on these words to go to the test results forum). You should see 'Jamie's test results' in the list of topics. P Bear R.N. has analysed your results for you.
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
|
Bones197828
Member
|
Posted: Thu Nov 20th, 2008 21:25 |
|
Hi everyone I just wanted to touch base with you all and let you know that I found a Doc to help me with the MP. I will be starting the MP once I order and recieve my sun glasses. Where can I order them?
If any of you(s) have any pointers or last minutes ideas to share with me before I start my journey, please share with me. I am so excited to start. I am going to re-read all of my information that I have recieve from this wonderful website and work really hard to stay on task. Please anything at all that any of you have to share or say please do....
I just really do not know what to expect. For any and all of you who have started and been on the MP could you please share you experiences with me as for what to expect...??
Thank you all, GOD BLESS!!!
Jamie - On my way to having my life back! This is Truly Beautiful!
Last edited on Thu Nov 20th, 2008 21:28 by Bones197828
____________________
40 MG Benicar 12/29/08 25 Mino 1/3/09
Sarcoid 2003, Fibro, Tietz, IBS, DDD, Depression, PTSD, Anxiety, Acid Reflux, Stomach Ulcers, Tintitus, PCOS
When the power of love surpasses the love of power, this world will know peace
|
Dr Trevor Marshall
Research Team
|
Posted: Thu Nov 20th, 2008 21:47 |
|
The answer is in
Essential Information About the MP (Required Reading)
and
Marshall Protocol FAQs (Required Reading)
(look for "Protecting your eyes")
|
Current time is 01:32 | Page: 1 2 3   |
|
|
|
|
