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chuck
Member
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Posted: Wed Sep 17th, 2008 20:43 |
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Hello everyone from a newbie here!
I just registered , plan on trying MP, and have found a doctor to work with me who I will see in two days. I have been diag with sarc and silicosis in my lungs. I can not seem to get an answer from my doctors as to which of the two is most responsible for my massive fibrosis. Biop found a little silica but also found nodules without silica. I have had some exposure to silica and dust from sanblasting a few times but never worked in such an enviroment. I would consider my exposure to be somewhat minimal. Lung capacity is dropping fast though, 19% in last 6 months, and I am afraid sarc would not be this fast but silicosis would. Any thoughts or experience on this?
Regardless, since I know I have sarc I do not see any real good options other than the MP. I really have only minor symptoms of sarc other than the damage in my lungs. Such as seeing floaters occasionally, migrains occasionally, Frozen shoulder once, red patches on skin rarely, a little loss of energy, and so on. All of which may not be sarc related but probably are. I also have no sensitivity to sun that I know of.
My questions for starters:
Since the Study Site is closed to new patients, are there many trying the MP from this site and how is the support?
My doctor can get full access to the study site , and thus info on phase 2 &3,Correct?
I noticed that statins and niacin are on the list of drugs that are a no no. I take both for high cholest. What can I expect my cholest to do on the MP without these drugs?
Since it is not possible for me to remove myself from all light because I work in a brightly lit area, (I can minimize it, especially sunlight) can I expect good results but just slower? I have to cut grass and stuff like that at home, can not afford to have it done, so can I just cover up good, sweat to death, and go cut it?
I do not wear sunglasses even in the brightest sun and it does not bother me in the least. I do not like to wear them either. I know I will have to change on the MP but will the treatment make me sensitive to sunlight?
My wife also has th1 disease, diagnosed with mixed connective tissue at this point since she has simptoms of several of the specific th1 diseases. Anything wrong with us going on the MP together? I guess I am wondering if both are herxing badly, can we cope with keeping our home and lives together?
Enough ? for now.
Glad to be here!
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Julia
Advocate (on leave)
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Posted: Thu Sep 18th, 2008 01:02 |
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Hi Chuck,
What can I expect my cholest to do on the MP without these drugs?
See What should I do about my high cholesterol?
Since it is not possible for me to remove myself from all light because I work in a brightly lit area, (I can minimize it, especially sunlight) can I expect good results but just slower?
Probably. But everyone's different - see Light Sensitivity.
I have to cut grass and stuff like that at home, can not afford to have it done, so can I just cover up good, sweat to death, and go cut it?
Some cope by cutting grass at twilight, or by artificial light; some find they can manage by covering up, wearing NoIRs... and sweatin'!
will the treatment make me sensitive to sunlight?
Almost certainly, to some degree, for a while. See Protecting Your Eyes.
Anything wrong with us going on the MP together?
What children/dependents have you at home? One of you needs to be able to cope. If none, then it's probably a good idea to do it together.
Since the Study Site is closed to new patients, are there many trying the MP from this site and how is the support?
There are two groups of members on this site: those who are also members of the MP study (who post mainly on the study site MarshallProtocol.com, including obligatory weekly progress reports), and those who are on the MP independently, through their doctors.
We would dearly love to be able to help everyone, but we have a very small band of volunteer nurses, backed up by a very small band of volunteer advocates. Those who are in the study ask medical questions of the MP nurses, and receive guidance to ensure they get the MP right.
All doctors are welcome to join the private Professionals' Forum, where all the help and support they need is available, as well as access to the whole protocol from the start. Those who are on the MP independently must refer to their doctor for medical issues, and learn to search the MP 'library' on the study site to find information.
All the information you need is in the vast MP 'library' on the main site. On this site the advocates are happy to act as 'librarians' to help you find what you need to know to make your MP journey a success.
There is no medical support available for independents, but you're welcome to ask non-medical questions that can be answered by more experienced members. Any medical questions exclusive to your own case must be addressed to your doctor. There is no need for independents to post progress reports, though you're welcome to drop in here occasionally and let us know how you're getting on.
We are very well aware that this situation is far from ideal for independents, but the only alternative we could see was to close the whole thing down to anyone who wasn't in the study.
Please do make sure you know the following essential information thoroughly:
Phase1-Aug08
FAQs Easy Finder & the ABC of MP
Essential Information About the MP
How to do a site search
Read, read, read... and let us know if you can't find what you need... 
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Always consult a physician
Essential Info; FAQ; Julia's story
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chuck
Member
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Posted: Thu Sep 18th, 2008 23:52 |
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Thanks Julia,
Your answers are very helpful and the more I search the more I find that most every question has an answer somewhere on one of the sites. You are right, it takes a lot of reading to absorb this whole thing.
I am somewhat confused as to what is a medical vs a non-medical question. I can see the line getting blurred here. Can you give me clarification or an example that would help?
Also I read the cholesterol info and I did not get the answers I was looking for. I found that cholest will probably get better as I progress along, but I was wondering more about the beginning stages. Like is it expected to go way up in the beginning when I am off of statins and the MP has not yet killed many bacteria?
Thanks again
Chuck
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Julia
Advocate (on leave)
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Posted: Fri Sep 19th, 2008 00:20 |
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Chuck, I agree that the line between medical and non-medical questions is difficult to see! Really, it's just a matter of what we (non-medically trained) advocates feel confident to answer from our own experience and the info on the site.
Your question about cholesterol (if not answered by the link given, or this one: statins) would require me to ask a medical moderator, and they're usually too busy. So that's one that would need your doctor. I mean, we're not about to tell you to give up a medication that your doc says is essential - we're not qualified. All our info comes with the rider: "this is to discuss with your doc".
But lifestyle and diet questions, or questions about the science of the MP, we can usually handle
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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chuck
Member
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Posted: Fri Oct 17th, 2008 20:37 |
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Diagnosed with sarc. major symptom is lost lung capacity due to granulomous and fibrosis with some calcification. Pft about 64% now, was 79% in Feb, other occasional symptoms are floaters and migrains, Also beleived that I have silicosis. Have sand blasted a few times as a hobby but not as an occupation. Siliconic nodule was found in biopsy but most was gran. from sarc. Nasty looking CT with more problem in right lung. biop done on left lung. also have small gran. spot in my liver.
The date the blood was drawn. 10/1/08
-Which lab did the tests? Spectrum
-Was the 1,25-D sample was frozen for shipment? Did not get a straight answer when I ask about this
-How long have you been avoiding foods with vitamin D in them? have not been
-How long have you been avoiding sun/lights? Have not been
-List all meds, supplements (both prescription and OTC) you have been taking and why. Advicor(statin with niacin) for cholesterol, hdl is low without the niacin, & daily multi vitamin but nothing since 9/27/08
-When and for how long have you taken prednisone or any other immunosuppressant in any form? Never
-When and for how long did you take Vitamin D supplements (including any vitamin-mineral supplements), omega-3 supplements and/or any kind of fish oil? Took once daily multi vitamin for about 1 1/2 year before stopping 4 days before these test.
-Were you taking Benicar when the sample was drawn? No
-Were you taking an ARB or or an ACE inhibitor when the sample was drawn? No
1,25D 47 pg/ml
25d 32 ng/ml
ACE 62 U/L
I have a doctor that will try a ther. probe using men. alone. If he feels I have herxing he will start me on the MP as outlined. I have decided to do the TP. should I start it now?
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chuck
Member
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Posted: Sat Oct 18th, 2008 03:11 |
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| I have posted my D-M results. I have a couple questions. I continue to see warnings about not taking mino until after being on benicar. But it is also listed as an approved ther. probe to go on mino alone to see if it results in a herx. Is it ok to do this? My doctor wants to try mino alone as a TP and I am ready to go with it. He said if I herx and he knows it is not a reaction to the med but real herxing he will put me on the MP as per the guidelines. Up until this point I have not reduced vit d in any way except to stop my daily multi vit a month ago. I will reduce d from my diet as I go on the TP with mino. Is it OK to just go ahead and start the TP under these conditions?
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P.Bear R.N.
Research Staff
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Posted: Sat Oct 18th, 2008 07:07 |
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Chuck,
Your 1,25-D is elevated at 47pg/ml (the population average is 25-29 pg/ml). It is 1.89 sigma high and based on population studies, 97.05% of the population would be expected to have a lower number. This number would have been even higher if sample was not frozen.
Your 1,25-D is above the maximum of 45pg/ml listed in the Merck Manual of Diagnosis and Therapy (15 Oct 2006 online). At levels above about 42 pg/ml, the 1,25-D (generated by the Th1 inflammation) begins to stimulate bone osteoclasts, causing bone to be resorbed (dissolved) back into the bloodstream. Not only does this lead to osteoporosis, but also to calcium being deposited into soft tissue of the body, including the lungs, breasts, and the kidneys (where it forms kidney stones). Please see Osteoporosis, osteopenia and Th1 illness.
Your level of elevation without the higher 25-D might suggest inflammation in major organs such as the heart, liver and lungs.
When should I be concerned about cardiac symptoms?
Your 25-D of 32ng/ml is high and reflects your reported vitamin D supplementation. Because 25-D is immunosuppressive, you need to avoid ALL sources of Vitamin D to get it down to a therapeutic level of 12ng/ml or less. Please see Foods To Avoid and The importance of avoiding vitamin D.
"The 25-D seems to be the most critical factor as to whether the immune system is able to start working. Any level of 25-D above about 20ng/ml is likely to be acting as an immunosuppressant, with an action very similar to that of corticosteroids." Dr. Trevor Marshall, Ph.D
Your D-tests, diagnosis and symptoms clearly indicate Th1 inflammation. Please see Symptoms of Hypervitaminosis-D and you may recognize a few more. You will not get well and your health will continue to deteriorate if you don't treat the underlying bacterial cause of Th1 inflammation with the MP. Please see Is the MP an applicable treatment for my disease?
I would not recommend a therapeutic probe with Mino alone in someone with sarcoidosis of the lungs because we are certain that the MP is the correct treatment. Without the addition of Benicar to protect the heart and lungs the immunopathology from a minocycline only probe could be difficult. In cases of severe lung and heart involvement you want to be able to reduce response with extra Benicar.
Most supplements and many medications must be avoided on the MP. The statin and the niacin are contraindicated.
Our clinical study is closed to enrollment.
best,P.B.
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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Julia
Advocate (on leave)
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Posted: Sat Oct 18th, 2008 09:17 |
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Chuck,
Mino alone is a last resort therapeutic probe. For me, it worked big time and I started to heal, but for some, especially the very ill, it causes too much immunopathology and could put them in danger.
Benicar protects your organs from the effects of the IP - doc might read printouts of some of these to set his mind at rest:
FDA safety insert
Benicar-Basic Information
Benicar Applications Beyond Hypertension
The need for a Benicar blockade
Why shouldn't we ramp up the dose of Benicar?
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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chuck
Member
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Posted: Mon Oct 20th, 2008 14:25 |
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This quote from Dr. Marshall made me and possibly my doctor, (I know he was reading info from the study site) decide on a mino alone probe.
"Your doctor may agree to see what effect minocycline alone has on your symptoms. Begin with 25mg every other day and ramp by 25mg increments until a maximum of 100mg every other day. If this provodes the expected immunopathology of Th1 inflammation (an increase in symptoms), your doctor may then be agreeable to treating with the Marshall Protocol."
He wanted to try this probe and then see if he could get prior approval from my insurance for the benicar if I had the expected reaction.
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Julia
Advocate (on leave)
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Posted: Mon Oct 20th, 2008 14:57 |
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Chuck,
I can only repeat to you what PB said above, I would not recommend a therapeutic probe with Mino alone in someone with sarcoidosis of the lungs because we are certain that the MP is the correct treatment. Without the addition of Benicar to protect the heart and lungs the immunopathology from a minocycline only probe could be difficult. In cases of severe lung and heart involvement you want to be able to reduce response with extra Benicar.
What should I know about respiratory immunopathology?
When should I be concerned about cardiac symptoms?
If doc insists on this, make sure you follow the Phase 1 guidelines in every way apart from the Benicar. Note especially:
Allow a week or more between increased doses to make sure the Immunopathology is not more than the patient wishes to tolerate.
How To Obtain Insurance Benefit for Full Dose of Benicar
Take care
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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chuck
Member
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Posted: Tue Oct 28th, 2008 21:00 |
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Doc still wanted to try the mino probe. I have been on 25 mg every other day for a week and will take 50 mg tommorow. I have not experienced anything that I can say for sure is immunopathology so far. I have coughed up small amounts of stuff occasionally but otherwise may be feeling better than I have in a while.
Julia,
What was your experience on mino only like? Did you have symptoms related to the immunopathology early or did it take a while? I want to know for sure that I am having or going to have some herxing from the mino. This will convince me and my Doc to go fully to the MP.
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Sallie Q
Member
| Joined: | Sat Aug 9th, 2008 |
| Location: | Australia |
| Posts: | 56 |
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Online
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Posted: Tue Oct 28th, 2008 22:42 |
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Chuck, while I was reading onsite and waiting for doctor to exclude tumour as causing symptoms before letting me have any prescriptions............
I stopped all supplements, seafoods etc and went into almost total darkness; I am sure what happened next was indicative of Th1.
Had a 3 day episode, 2nd day pains everywhere, needle like sensations, itchy skin, low fever. 3rd day diarrhoea (had to cancel Dr appointment!) Was like no other sort of fever. When my D tests were botched doctor started benicar anyway.
Have you tried to exclude light yet ?? best ...Sal
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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
modPh2done 25Dnow~6.5 eGFR49 creatinine100
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chuck
Member
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Posted: Tue Oct 28th, 2008 22:50 |
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| I have cut out a little light but can not do much because of my job. It is getting colder now so I will cover up more. I may be expecting more too early from taking mino but it seems if you only stopped suplements, medication and light and got such a reaction the mino would do even more for me. Maybe my bacterial load is lower but I have a lot of granulomas in my lungs. No other major symptoms though.
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Knochen
Advocate
| Joined: | Wed Oct 17th, 2007 |
| Location: | USA |
| Posts: | 224 |
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Posted: Tue Oct 28th, 2008 23:03 |
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Chuck,
I'm afraid that you are trying to compare apples to oranges. The mino alone may or may not act as a reliable probe. The benicar does things that really potentiate the effects of the antibiotics. Remember that the reason we take it is that it allows the immune system to work correctly. It's not the antibiotics that do the bug killing - they just help, it's the immune system that does all the heavy lifting. If your immune system is compromised via the TH1 infection, you are missing the most important part of the toolkit.
In essence, you are trying to find out if you get car sick by just sitting in a car in the driveway. Sure, a few people will react even to that, but the only real test is to be out on the road with the car swaying around.
Don't let the doc make your decisions for you. It really doesn't matter what he wants. His opinions will not change the science involved. Doctors are replaceable; your health isn't.
____________________
I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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Aunt Diana
Advocate
| Joined: | Fri Oct 26th, 2007 |
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Posted: Tue Oct 28th, 2008 23:14 |
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Chuck,
I have just read this thread and am rather frustrated. I don't understand how you expect 25mg mino to work without the benicar blockade in place and without avoiding light.
My understanding is that the immune system is suppressed until you activate it by lowering your vitamin D and getting the benicar blockade in place. The only way to lower your vitamin D is to avoid light and any ingested Vit. D.
I don't see how you can expect the mino to work at such small doses without having accomplished the other two.
It seems to me that is the very foundation of the MP.
____________________
| ABC of MP| MP Stories| Bacteriality|
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chuck
Member
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Posted: Thu Oct 30th, 2008 14:25 |
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Before you folks start bashing me too bad for trying the mino please read the following quote from Dr. Marshall
"Your doctor may agree to see what effect minocycline alone has on your symptoms. Begin with 25mg every other day and ramp by 25mg increments until a maximum of 100mg every other day. If this provodes the expected immunopathology of Th1 inflammation (an increase in symptoms), your doctor may then be agreeable to treating with the Marshall Protocol."
This is exactly where I am. I want to try the MP. The one doctor I have found willing to treat me is only willing to start following the above suggestion from Dr. Marshall. I cannot tell him what to do at this point, he will just say find another doctor. This has been refered to as a last resort type of probe by the advocates here but that is not in the statement about a mino only probe. So I have to beleive my doctor feels it is a good test.
As for what I expect to be happening on this probe: I expect to get an "increase in symptoms" just like Dr. Marshall says. I have no expectations as to whether this will happen at 25mg or 100mg. I have no expectations as to how severe the reactions will be. That is why I am posting the question, asking what should or can I expect. Nothing signifcant is happening at 25mg, should it or will it most likely be later? I know that this may be different in each case. I am just looking for some help and support here at where I am now. I am cutting out the vitamin D and avoiding a little light. I have read on here many times that it is ok to the MP if you cannot eliminate light exposure, it will just slow the proccess down.
Also Julia has stated she went on mino only at first. And she had herxing on the mino only that she described as "big time". I was simply wanting some feedback from her on this as to what dose and when into the mino only treatment that she had the symptoms.
Please people, don't get "frustrated" with me. I am here for help and am doing all I can. My doc wants to do a mino only probe that Dr. Marshall has suggested, if he gets the results he is then going to put me on the MP to the letter.
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Julia
Advocate (on leave)
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Posted: Thu Oct 30th, 2008 15:01 |
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Chuck,
No-one's saying you're wrong to do the mino probe - you have to take whatever you can get. In my case, I had big improvements from the start, and the only herx was crashing fatigue, but I already had six months of D and light restriction, and no record of heart or serious lung involvement.
Note that your quote from Dr M is in the context of cutting D and daylight. And remember, he also says a paragraph later,
However, if the level of a person's 25-D is above about 25 ng/ml then their immune system may not be able to kill the bacteria, even with the help of antibiotics, and the probe would fail.
We wish you well, and hope your probe is successful. Take care, and keep in touch
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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chuck
Member
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Posted: Thu Oct 30th, 2008 17:12 |
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Thanks Julia,
That is all helpful to know.
With my 25D starting at 32, and me trying to cut D (giving up fish is almost worse than being sick) out of my diet but with only a little reduction to light and no Benicar, how long should I wait to have the D tested again to see if there is any significant reduction?
It is interesting to know that my Doc has told me that a growing number of "main stream" doctors are treating sarc with mino and most are having some kind of success. I am on 50 mg now and I can tell I feel better and have less fatigue than before. I have had no floaters since starting mino either. I would think if this continues without some immunopathology showing up that my Doc may not treat me with the MP. That is why I do not want to miss or miss interprit any possible symptomatic reaction.
Julia, did I not read that after some time the mino stopped working for you and that after going on the MP later that it worked again, allowing you to move on to Phase 2?
I would prefer to avoid that route if possible.
Also, I can't spell. Is there a spell checker that I haven't found in the reply menue?
Thanks to all that have posted here. I really appreciate all the help.
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Knochen
Advocate
| Joined: | Wed Oct 17th, 2007 |
| Location: | USA |
| Posts: | 224 |
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Posted: Thu Oct 30th, 2008 17:51 |
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Chuck,
3 months between Vit D25 tests is about right. It moves pretty slowly even when you are very strict about it.
For spelling, it may depend on your browser. If Firefox, try right-clicking in the message pane and you should see a menu with Check Spelling.
It is interesting to know that my Doc has told me that a growing number of "main stream" doctors are treating sarc with mino and most are having some kind of success
"Some kind" of success, is exactly what they will see with mino alone. There will still be lots of CWD hiding after mino alone, which is why the benicar is vital to success. It's pretty obvious your doc doesn't yet undertand the real issue with the VDR, or he wouldn't be insisting on mino alone even for the probe. It would be good if he were to get signed up on the professionals forum so he could talk with peers about how this works. Any idea what his objection to benicar is?
____________________
I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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Julia
Advocate (on leave)
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Posted: Fri Oct 31st, 2008 11:56 |
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| Mino alone is predicted to stop working after about three months - which is what I experienced. Then when I started Benicar, and re-started mino back at the 25mg, I started herxing again. See Is pulsed minocycline alone effective?
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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