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jennyb
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| Location: | Massachusetts USA |
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Posted: Mon May 19th, 2008 02:13 |
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Hi. I'm a mother of two diagnosed with sarcoidosis of the lung. Well they still have to do a biopsy. I just joined the board here and just getting started.
I remember I had an ear infection when I was a teenager and I never got it treated. The infection just went away. But i've always seemed to have problems with the same ear because I never got it treated. Now I have sarcoidosis and my ear is acting up again, it gets blocked and it itches. My lymph nodes are really acting up too. My doctor looked at it but found no infection.
I also got my wisdom teeth out just last year, I am 30 now. After I got my wisdom teeth out is when I think more problems started to arise. And I can't get rid of the problems, doctors find nothing wrong with my blood but all of a sudden I have granulomas on my lungs. So now I am determined to start the MP, I am going to find a doctor or try to talk to my doctor about it... I have a busy week ahead of me. I'm waiting to find out when the biopsy on my lung is going to be scheduled. Do you think they should do the biopsy... Because it's obvious i have it?
I got the sunglasses and i'm trying to stay out of the sun but it's so hard with 2 kids and so much to do. But i am going to try to start on this MP as soon as possible, I have been sick for a year not knowing what was wrong with me and now I know. It's scary but at least i know there is hope and help out there...
Last edited on Mon May 19th, 2008 19:06 by jennyb
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natalie17
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Posted: Mon May 19th, 2008 03:53 |
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Hi Jenny,
I too had recurring "ear infections" that doctor's could not find evidence of before starting the Marshall Protocol. They have since resolved & I now know they weren't ear infections. I also experienced blocked ears & itchiness, as well as a strange dampness in the ears.
If your doctor is unfamiliar with the Marshall Protocol, this thread contains suggestions to get your doctor on board with the MP.
You may contact members in your local area to ask about their MP doctor.
Although memberships for the study site marshallprotocol.com are currently closed (due to overwhelming interest) you can still search for people in your area. A lot of people make their email available on their profile pages (click on their user name & select "view profile").
Avoiding sunlight exposure is usually necessary to some degree. Before you begin to do that, please read Should I avoid sun exposure and vitamin D while I'm waiting to start the MP?
How to Avoid Sunlight and Bright Lights
Also Before you begin the MP, you must read and thoroughly understand the Phase One Guideline and review the items on this checklist to discuss with your Dr.
There is definitely hope 
Natalie
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Severe CFS/ME already heading back to health thanks to the MP (into my second year..) Natalie's Story | ABCofMP
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Julia
Advocate
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Posted: Mon May 19th, 2008 07:24 |
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Hi Jenny,
Natalie's given you plenty of good stuff to read! I'll add a couple more on the question of whether you should have a biopsy done:
Sarcoidosis - diagnosis says in part:Physicians like to have a tissue biopsy to diagnose sarcoidosis, and this is largely due to the fact that the common treatments for sarcoidosis are so fraught with side effects that biopsy proof is needed to justify their use. Biopsy is not always required, though, and now the serum D-metabolite tests are a good tool for measuring systemic inflammation. It isn't necessary to undergo a Bronchoscopy with transbronchial biopsy or an invasive and risky open-lung biopsy for a proven diagnosis of sarcoidosis or expensive tests to locate inflamed tissues in order to prescribe the MP.
Which diagnostic tests do I need?
Hypervitaminosis-D Symptoms.
Happy reading!
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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jennyb
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Posted: Mon May 19th, 2008 11:25 |
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| Hello, I was wondering where I can find the letter where you and the doctor sign to start the MP. Where I take responsibility to start the MP and the doctor is not liable. If that's how you explain it, i found it on the board here somewhere but can find it now. I would like to print it out to have it ready. Thanks!!
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Rico
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Posted: Mon May 19th, 2008 12:38 |
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The template letter of consent is at http://www.marshallprotocol.com/forum2/304.html#p16888
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jennyb
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Posted: Mon May 19th, 2008 13:23 |
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| Thank you everyone! Last edited on Mon May 19th, 2008 19:02 by jennyb
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jennyb
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Posted: Mon May 19th, 2008 18:54 |
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I have doxycycline my doctor prescribed me that I used to take but haven't taken in a long time. Should I take this medicine or wait until my lung biopsy is done so they can confirm it's sarcoidosis? Would taking the medicine affects their lab or biopsy results??
Also the doctor prescribed me Lorazepam to help me sleep, I sometimes have trouble sleeping and last night I had pains on one side of my head. She said it was my nerves and that i'm anxious. I still have to see an eye doctor to check on my eyes, sometimes they bother me probably from stress and being on the computer. I don't like taking a lot of medications and i'm especially not sure of the Lorazepam...
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terrylmcc
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Posted: Mon May 19th, 2008 21:31 |
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Hi Jenny,
I think you could avoid the lung biopsy. I was able to have a positive skin biopsy, to confirm my pulmonary sarc. Its a much easier procedure. If you have any dry flaky or raised red bumps. The doctor can do a punch biopsy.
Another option is to do a therapeutic probe with the MP meds. Or you can get your D metabolites checked, and post them for the moderators to interpret them for you.
Having a lung biopsy, is something i would avoid at all cost. Thats just me.
The moderators will give you a more comprehensive response than this. Hope you find the help you need. --Terry
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jennyb
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Posted: Mon May 19th, 2008 23:00 |
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| Yeah i would like to try and avoid the biopsy. My doctor never did a d metabolite test. I do have a couple patches like circle spots on my shin, but it is not bumpy... it is just flaky like and was a little itchy. I also had rashes from being in the sun and I had a bump rash like vesicles on my finger for about 2 months... My doctor said they would have to do the biopsy to confirm it, I don't know what to do about this... Last edited on Tue May 20th, 2008 23:14 by jennyb
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natalie17
Advocate
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Posted: Tue May 20th, 2008 00:49 |
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Hi Jenny,
Lorazepam is a benzodiazapine.
Upon starting the MP;
Dr Marshall recommends: try to keep all the Benzos to lowest effective dose (1mg, or so, p.r.n.) to achieve tolerable symptoms, reducing slowly as symptoms allow/ resolve.
See Medications to Avoid While on the Marshall Protocol.
I understand you have not yet started the MP, but upon starting the MP, doxycyclline, a part of the group of Tetracycline antibiotics , may interfere & cause uneccesary immunopathology/herx.
I need to take a different antibiotic for awhile. What should I do?
You may also want to see Can I use Doxycycline instead of Minocycline?
Terry suggested a therapeutic probe. What is a therapeutic probe? Discuss this option with your doctor.
For more information on D-Metabolites tests, see D-metabolites tests to discuss with your doctor.
After reading Julia's advice I would too would personally avoid a biopsy at all costs. But I am not a medical professional.
Good luck,
Natalie
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Severe CFS/ME already heading back to health thanks to the MP (into my second year..) Natalie's Story | ABCofMP
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jennyb
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Posted: Tue May 20th, 2008 12:07 |
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| Natalie, Ok why should I avoid the biopsy? Just because it is risky?
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Julia
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Posted: Tue May 20th, 2008 21:46 |
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Jenny,
In the quotation I gave you by Dr Marshall, he gave two good reasons to avoid biopsies:
1. serum D-metabolite tests are a good tool for measuring systemic inflammation. (these are vastly safer than biopsy)
2. Biopsy is invasive, risky, unnecessary and expensive.
Sarcoidosis patients have difficulty healing from wounds or surgery, as our immune systems aren't functioning properly. This makes surgery more risky than for others.
Please also see the topic What should I know about respiratory immunopathology? Scroll down about half way to a heading Pneumothorax (lung collapse). It would scare the boots off you 
You should ask your doctor what difference the results of the biopsy would make to your treatment. Are you being offered anything better than steroids if it proves positive? Steroids are only going to make you feel better temporarily, before their side effects make you more miserable than you were before. Meanwhile the bacteria causing your disease are partying 
Which diagnostic tests do I need?
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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jennyb
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Posted: Tue May 20th, 2008 22:35 |
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Ok I don't think they did all the tests necessary to see if it is an infection or inflammation (sarcoidosis). The lung doctor and other doctors are saying it looks like an inflammation, but we would have to do a biopsy to make sure. They never checked my d-metabolite or checked for strep or anything... They checked for TB and there was no reaction. All my blood work came out fine. I never had any fevers, i did have a cough and congestion and my daughter also had a bad cough too, she had strep and got treated for that.
So I guess I will have to make another trip to the doctor and get more tests. I shouldn't have to tell them what tests to do, but it's what I'll have to do to find out what this is. HMM
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jennyb
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Posted: Tue May 20th, 2008 22:46 |
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| And they haven't offered me any type of treatment yet until they find out the results finally... And I guess I wouldn't need any treatment right now since it is not severe? But they all did mention steroids as the first method of treatment, but I will refuse and find other options if it comes to it like the MP. Thanks Julia!
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jennyb
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Posted: Tue May 20th, 2008 23:19 |
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| I'm thinking what I have could also be lupus? But it looks more like sarcoidosis. I just have a lot of the symptoms like lupus, i.e. skin rashes, sensitive to sun, numbness tingling, i even had blue feet and hands in the toes and fingers. I initially started with severe stomach pains, bloating, constipation and diahrrea with skin rash. I haven't had any fevers or sweats though... It is tough trying to get a diagnosis.
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natalie17
Advocate
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Posted: Tue May 20th, 2008 23:52 |
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Jenny,
The reasons pointed out above by Julia are the reasons I would avoid a biopsy if in your situation.
Unfortunately at this stage when wanting to be treated with the marshall protocol it is quite common to have to help educate your Dr., and in a lot of cases ask him to do the required diagnostic tests. You may want to re-read SUGGESTIONS TO GET YOUR DOCTOR ON BOARD WITH THE MP
I guess I wouldn't need any treatment right now since it is not severe?
Most folks on the marshall protocol wish more than anything they found the treatment & started earlier than they did., I certainly do. The sooner you begin, the sooner you will recover. It will also stop you from getting any worse.
Thankfully I think you know this as you are already taking measures to begin the protocol.
Natalie
see also Which diagnostic tests do I need?
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Severe CFS/ME already heading back to health thanks to the MP (into my second year..) Natalie's Story | ABCofMP
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JRFoutin
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Posted: Wed May 21st, 2008 03:11 |
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Jennyb,
Think about this with me a minute Jenny. We might ask, "how important is it for you to understand where you stand in all of this, and what is your place in discussing options for your health?"
After all, there is only one you.
Doctors do "observe+test+result=dx+treatment." But are those tests in vain that seek a unique dx name that really only adds up to a sliding subcategory of Th1 Chronic Inflammatory Disease?
Is your problem really to have more tests --or-- more invasive tests, or is your problem really to talk serious business with your doctor about doing the least invasive testing process to rule out the parent-level category to all the children-level dx often identified for disease?
If you understand the pathogenesis of Th1, and the only tests needed to discover that, and you fully understand your health and life are on the line, then you should be able to negotiate for the best possible outcome.
I also recommend you frequently read Amy Proal's http://www.Bacteriality.com site. A good place to start is her recent presentation in vimeo (movie) format. Here is Amy's description and the link:
In the following video, I explain the science that forms the backbone of the Marshall Protocol in simple terms. I discuss the bacteria implicated in causing chronic inflammatory disease, and explain how these pathogens affect the immune system. I also describe the basics of the treatment itself, providing information that any patient who plans to start the Marshall Protocol, or any doctor planning to put a patient on the MP, should understand. My narration is accompanied by slides with pictures and images of the pathogens and molecules I discuss. The video is 89 minutes."
http://bacteriality.com/2008/05/07/mpintro/
Best to you Jennyb--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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natalie17
Advocate
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Posted: Wed May 21st, 2008 03:53 |
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Jenny,
I could not agree more with Janet's recommendation to read http://www.Bacteriality.com . The video Janet linked to is fantastic, as is the site.
Let us know how you go.
Natalie
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Severe CFS/ME already heading back to health thanks to the MP (into my second year..) Natalie's Story | ABCofMP
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Chris
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Posted: Wed May 21st, 2008 04:42 |
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I'm thinking what I have could also be lupus? But it looks more like sarcoidosis. I just have a lot of the symptoms like lupus, i.e. skin rashes, sensitive to sun, numbness tingling, i even had blue feet and hands in the toes and fingers. I initially started with severe stomach pains, bloating, constipation and diahrrea with skin rash. I haven't had any fevers or sweats though... It is tough trying to get a diagnosis.
Jenny, it's going to be tougher than you think for those doctors. Numbness, skin rashes, sun sensitivity, tingling are all things I've seen from the sarcoid, either directly or as herx, and my first diagnosis was Irritable Bowel. My wife has RA, and gets blue toes from time to time. The Hypervitaminosis-D Symptoms can appear in just about any combination for lupus or sarcoid, which is just another indication that they aren't different diseases.
And, as one of the actors on the "House" TV show said, "Why do we care which autoimmune disease it is? We treat them all the same!". That's true for conventional medicine as well as the MP, but only with the MP do we understand why and only for the MP is the treatment a cure.
I'm just writing this to avoid having you worry about a specific diagnosis get in the way of reading all the links suggested by the others before me here, or for getting on with the MP itself should you decide to do so.
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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jennyb
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Posted: Fri Jun 13th, 2008 14:34 |
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| Hi I was just wondering if anyone in the Massachusetts area is being treated on the MP? Thanks, Jennifer
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