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Memoking
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Posted: Wed Apr 20th, 2005 05:36 |
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| If taking Minocycline, does the Benicar eliminate the Herx reaction?
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Mary..Sarcoidosis. 1,25D=56..25D=6..Began Benicar 20mg q3hrs..9/4/05. Granulomas in arms, hips,legs. Painful lymph nodes hips, armpits. Pain in chest,back,head. Avoiding sun/bright lights/Vit D. Using NoIRs
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Reenie
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Posted: Wed Apr 20th, 2005 06:03 |
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Your question is not really all that precise, but I will try to answer. 
Benicar works in more than one way:
1. Benicar helps reduce the inflammation so that one is ABLE to herx on the mino, even if one would be unable to herx due to high 1,25-D. (inflammation)
2. Benicar helps protect the organs/tissues from damage due to herx and helps to alleviate some of the symptoms herxing causes, but it doesn't stop the herx.
Please read these links. This info will help you understand:
I seem to be Herxing with Benicar alone? Why?
Observations of Jarisch-Herxheimer Reaction in Sarcoidosis Patients
The Marshall Protocol -- simple explanations
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Memoking
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Posted: Wed Apr 20th, 2005 06:13 |
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Reenie..thanks for your answers..
I'm a little confused by all this..For example, I am trying to stay out of the sun and avoid foods with Vitamin D...However, I slip up occasionally, and then my arm lumps get bigger...The Sarcoidosis I have is arm lumps on both arms..When I leave off the Vitamin D foods and stay out of the sun, they shrink a little,but not enough to cure it and not enough to make them go down completely, they are still like "mounds"...However, if I get in the sun a little or have a little food with Vitamin D, then the lumps get bigger, and also I feel dizzy, tired, and have to lay down...my ears start ringing then too..sometimes my head in the back swells..Is this due to the lights? Even in the house, the lights are sometimes bright, or if I go to the store, so I have to get the NoIR sunglasses...So my question is, if I start on the Marshall Protocol and take Benicar, will I have these same syptoms..Will my arm lumps get bigger, will my head hurt and become dizzy, tired, and have to lay down? Is that the Herx? Or does the Herx just come from the Antibiotic...the Minocycline..See, I'm a little confused, and don't know if I can carry on the program...Not only that, but what if I start it, and then can't follow thru? Is that going to make the Sarcoidosis worse? I am taking Cortisone shots in my arm lumps, but so far have only done that once, and it hasn't gone over my whole body...so that is not the issue..the issue I have is the lights/and the sunshine, and the foods with Vitamin D..because I know those make my lumps worse, but leaving that stuff off is not enough to cure it..so that's why I would like to know what will happen if I take the Benicar and then the Minocycline? Can you give me a picture? Sometimes I also have difficulty swallowing and breathing also.I guess these might be symptoms of Sarcoidosis also? So please let me know...Thanks...
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Mary..Sarcoidosis. 1,25D=56..25D=6..Began Benicar 20mg q3hrs..9/4/05. Granulomas in arms, hips,legs. Painful lymph nodes hips, armpits. Pain in chest,back,head. Avoiding sun/bright lights/Vit D. Using NoIRs
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Posted: Wed Apr 20th, 2005 06:28 |
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Mary,
Like many people diagnosed with sarcoidosis you are not aware of the extent of your disease. Your most obvious symptom, your skin lesions, are not your most serious problem. Your shortness of breath and difficu;ty swallowing suggest extensive systemic involvement.
Yes, your symptoms will get worse when you take Benicar and minocycline. That is the Herxheimer reaction described in our paper. But this reaction is controlled by the amount/schedule of Benicar and minocycline. It isn't easy but it isn't anything to fear either. If you do not treat your sarcoidosis with the MP, you can count on your body continuing to deteriorate along with the quality of your life.
Please get your D-metabolites tested asap so you can prove to yourself that you have a serious condition that needs correct treatment.
Best,
Meg
P.S. Please add the required signature line so the moderators can answer your questions more accurately.
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Memoking
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Posted: Wed Apr 20th, 2005 06:43 |
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| Thanks.>I wasn't aware of the Signature Line, but I have filled it in to the best of my ability. I guess I am afraid of taking Benicar and Minocycline..I once took Bactrim, which is a sulfa drug, and had a lot of itching and my kidneys hurt when I took that...so I quit taking it..They put it on my list of drugs that I am allergic to....Also, a few years ago I took Doxycyline for bronchitis or a respiratory infection, and after taking that a few days I got where I couldnt' breathe, so I had to quit taking it, and they put that on my list of drugs that I am allergic to. So now I don't know if I can take the Benicar and the Minocycline..and also, I am worried that maybe I will have a reaction where I can't breathe or have heart problems or something...that's why I am afraid of starting it..However, I have been trying to stay out of the sun and avoid Vitamin D foods since February of this year, since that is when I learned of the Vitamin D connection to Sarcoidosis..I read it on your website,otherwise I would not have known about it...
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Mary..Sarcoidosis. 1,25D=56..25D=6..Began Benicar 20mg q3hrs..9/4/05. Granulomas in arms, hips,legs. Painful lymph nodes hips, armpits. Pain in chest,back,head. Avoiding sun/bright lights/Vit D. Using NoIRs
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Posted: Wed Apr 20th, 2005 08:02 |
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Mary,
What you described about Bactrim and doxycycline are classic Herxheimer reactions. Please read Observations of Jarisch-Herxheimer Reaction in Sarcoidosis Patients so you will understand that you are not 'allergic' to these medications.
I understand that you might be frightened by the possibility of severe Herxheimer reactions. But you should be even more frightened by the real probability that your lungs and heart will continue to deteriorate to the point where you will no longer be able to ignore your shortness of breath and you might develop cardiac arrhythmia.
There is no point in delaying. You won't get better by just avoiding sun/lights and Vitamin D. Your positive reaction to avoiding sunlight should have convinced you that the MP is the only way you will get well. It won't be easy but lot of us are doing it and have already got our life back. Now our future looks great.
Best,
Meg
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Memoking
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Posted: Wed Apr 20th, 2005 08:17 |
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Thanks.....am I to understand then that the Benicar helps control the Herx reactions?
Also, I am going to talk to my regular doctor this week about this whole thing...we live in a small town, my regular doctor was going to treat my Sarcoidosis with Prednisone, but I didn't let him....
Then he sent me to a Dermatologist who is treating the arm lumps with tiny amounts of Cortisone shots once a month ...so far he has only done one arm, and I am supposed to go back in a month,*Which would be May, to get the other arm done..he thinks it will take several months to get the arm lumps to go down..It might work, I don't know...
I think what is helping the most is staying away from Vitamin D and sunshine...
Yes, It seems like the MP makes sense to me, I am just afraid of trying those medicines...
The Dr. I found for the MP lives in Chicago, about 2 hours away from here..he told me to talk to my regular doctor about it and also the Dermatologist, since they would be monitoring me...
I am sure my regular doctor would go along with it..He's a GP...but the Dermatologist will probably not like me to quit the Cortisone shots...and I've only had one arm treated so far..
Anyway, the Dr. in Chicago told me it would cost $300 for the 1st visit with him, and he would test my D-metabolites, and then prescribe the medicines for me...Then he said I would have to go see him every 3 months for follow-up visits costing $150 apiece..
So that is the other thing, the price, of course we have insurance, but this Dr. in Chicago doesn't take any insurance..
So also, I have found out the medicine is quite expensive..but I am willing to try it if I can manage the symptoms of the Herx..
Right now, I know I have Hypervitaminosis D sometimes, and that causes me lumps to grow bigger, and you are right, I don't know if I have it in other parts of my body...that's true...
Yes, I am going to talk to my regular doctor this week and let him see the papers I have printed off the Internet to see if he will agree to monitor me if I go on the Marshall Protocol..
Right now, I have some chest pain occasionally, but I don't seem to have Arrhythmia I don't know what that is...is it rapid heartbeats..?
Anyway, I don't know how long I have had Sarcoidosis..I have had these arm lumps for 2 years, they started out as bruises, then got bigger and wouldn't go away..So I guess for a long time I thought they would go away, and finally got them diagnosed..but it took 3 biopsies ....it took several months and several doctors.
.NOne of them know about the Vitamin D connection, I only learned of that from the SarcInfo website..And I have told the Dermatologist about it, but my regular doctor doesn't know..so I am going to tell him this week..
Thanks for the answers to everything..you are helping me...Thanks again...
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Mary..Sarcoidosis. 1,25D=56..25D=6..Began Benicar 20mg q3hrs..9/4/05. Granulomas in arms, hips,legs. Painful lymph nodes hips, armpits. Pain in chest,back,head. Avoiding sun/bright lights/Vit D. Using NoIRs
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BARNEY
Moderator
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Posted: Wed Apr 20th, 2005 12:56 |
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Mary,
My name is Barney on MP. I am in Phase 2 and am currently taking Benicar, Minnocycline, and a second antibiotic. I am 61 years old. I am the 'grandmother' of sarcoidosis patients, you might say, since I have had it for 40 years. I knew, when I found MP, that sarc was about to kill me. I had started having chest pain almost all the time. I hated saying anything to my doctor because I knew it would be the same old routine. They always tell you that it goes away. THAT IS NOT TRUE, IT DOES NOT GO AWAY.
When I was 21, they told me I would never walk again, sarc had settled in my ankle. It was swollen 5 times bigger than normal and had a fever so high that it peeled like a sunburn. My father had to carry me to the rest room. They treated me for 2 weeks at the hospital. When I went hom they said you will not walk on that foot. I was young, I would prove them wrong and I did. (Still can not wear high heels, but who cares.)
Then I started with a sarc lesion the size of the head of a straight pin on my left arm near my elbow. It was biopsied out 6 times and ended up after many years as scar tissue the size of a half dollar. My finger tips went numb.
Next, it went to my lungs and as the doctor described it "it appeared in both lungs that mice were building houses". I was on 30 mg of prednisone for a year. It finally went in remission, but I lost all that lung capacity that sarc had entered plus I had asthma at the same time. I could not climb one step, I had no breath. I did not want to live. My husband was desperate, got all kinds of air cleaners and I went to another (lung) doctor WHO KNEW NOTHING ABOUT SARC. This will get endless in your life, hearing that they don't know what to do.
When I found MP, I was having such a hard time breathing, that I had to stay home. The odors of face soap, shampoo, laundry soap, etc. were so strong I could not stand it. I resorted to using lemon dishwashing soap to take a shower and wash my hair. No medicine helped. I felt doomed. Then my chest started hurting on top of that.
I fell off a stool putting storm windows in and they did an MRI of my head and found lesions there. My husband had already passed away and I lived a long way from my kids. I did not want to put the burden of my illness on my children. Just knowing they could have it from me, made my heart ache for them. In 1995, they removed my right kidney (due to a cyst) (sarc again) and in 1996, I had a total hysterectomy due to cysts and endometriosis, in 1996 and 2 months later they found it in my bladder. So far so good with 1 kidney.
So....I read everything on the sarcinfo site I could, printed all the papers for my doctor and asked her to read them and I would be back to get her answer if she would do MP with me. She said yes. So...here I am on Phase 2, getting better each day.
Is it hard, YES, Is it worth it YES, would you do it again, knowing what you know now, YES, IN A HEARTBEAT.
EDUCATE YOURSELF BY READING ALL OUR POSTS ON MP ALSO, REALLY EDUCATE YOURSELF, ASK QUESTIONS IF YOU NEED TOO, UNDERSTAND THAT YOU ARE GOING TO GO THRU SOME TIMES WHEN IT IS ROUGH, BUT YOU JUST KEEP SAYING TO YOURSELF THAT SOON I WILL BE WELL AND DON'T HAVE TO COUNT ON DOCTORS WHO 'DON'T KNOW ANYTHING'. I WAITED 40 YEARS FOR MP. I THANK GOD EVERY DAY FOR DR. TREVOR MARSHALL. IF TREVOR HAD NOT HAD SARCOIDOSIS, WE MAY ALL STILL BE SUFFERING. HE WENT THRU MP AND HE IS GREAT. A SWEETER, CARING MAN YOU WOULD NEVER WANT TO MEET.
Mary, you have no where else to go that will work. Don't just dwell on it, commit and go for it, the only thing you have to lose is SARCOIDOSIS. Believe me you don't want it.
My theory is......NOTHING IN THE HERXHEIMER REACTIONS IN MARSHALL PROTOCOL IS AS BAD TO DEAL WITH AS A LIFETIME OF SARCODOSIS.
I sincerely hope, with all my heart, you join us and do MARSHALL PROTOCOL.
BARNEY
ps keep in touch with pm if you would like, it helps you motovation and moral to talk with one another.
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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John D
Member in Phase 3
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Posted: Wed Apr 20th, 2005 18:27 |
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Mary, My opinion is you would be wise to forget about the doc in Chicago and concentrate on educating your local general doc. Hopefully insurance will pay for his bills. If you have to pay for your meds out of pocket, look at some of the other topics on this site that discuss purchasing strategies.
I guess I was fortunate to find a local general doc to learn about the MP with me. I only had two office visits in the first year of the MP, one to get blood drawn, and another to discuss results of the test and get the prescription. He charged $75 for each visit, and I almost think I should have charged him for the second, as I spent most of the time educating him. But in the long run, I was grateful to get his cooperation and consider that money well spent.
You need to understand you have to be proactive and learn all you can about the MP by reading this site and also sarcinfo.com. Then print out basic stuff to take to your doc, and realize up front, he may not take the time to read much if anything. In my case, my doc realized the MP meds and dosing schedule is a very safe and almost risk free protocol, and he could see no downside to giving it a try. If nothing else, that is the message you need to get through to your doc initially. All the better if he actually gets excited about the MP and digs in and studies it for himself, but don't hold your breath.
Once you get your test results, the moderators here will interpret the results and will advise you and your doc how to manage the meds and the protocol. Dr. Marshall welcomes calls from your doc if he has any questions or needs advice.
Good luck, John Dresser
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Sarc- Lungs dx (biopsy)1985, pred 3yrs to 88. Begin MP:Feb/04 1,25D=58.1, 25D=18.1 Phase 2: June/04. Phase 3: Sept/04. Clean-up phase Oct/06. April/05: D1,25=13 25-D=6. June06: D1,25=31 25-D=11. Sept07: 25-OH D=18
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Memoking
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Posted: Wed Apr 20th, 2005 19:18 |
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John...Thank you for your opinion...it seems wise.....I am going to see my regular doctor here tomorrow..I don't know if he knows how to do the blood tests and where to send them off...but I am going to take him the papers I printed off the Internet and talk to him about the Protocol....If he agrees to do this do all the tests and prescribe the medicine, that would save me a lot of money....because I do have insurance. As for the blood tests, not sure he knows where to send them , but if I have to, I will go to the doctor in Chicago, I am just trying to find a cheaper way....One more question: What happens if I try taking the Minocycline and it upsets my stomach? Doesn't that have to be taken with food? And what if I can't continue taking it because it upsets my stomach? I can't take Erythromic because that is hard on my stomach..So what if I try taking the Minocyline and cant' continue? What will do that do to the Sarc I already have? Also, I have another question for you....how do you feel being in the 3rd phase of the MP? How is it affecting you: In other words, how is your physical well-being now that you are in Phase 3.. So thanks for your answers..Good advice..I will see if my regular doctor can 'grasp" the information I am going to give him, and see if he is willing to try it with me...As for the Dermatologist that is actually "Treating" my lumps with Cortisone shots, he is a different story, I don't know how he will react..My next visit with him is May 5, I think...I am supposed to get Cortisone shots in my left arm lumps that day..He has already done the right arm in April, I am not sure he will want to abandon the Cortisone treatment, and I don't know if he is able to do the MP with me or not, since he is a Dermatologist.....but he might have access to do the bloodwork and all that ...I don't know..>>PS>>>The Dr. in Chicago mentioned that he would do my D-Metabolites and send them to a lab named Questcor? Is that familiar to anyone here/ He apparently knows where to send the bloodwork and how to interpret the results...and how to prescribe the medicine..But I will try to be Proactive as you said, and figure this all out.. Any other comments..? Would be glad to hear from you again..At least I know I can go to the Dr. in Chicago if I can't find anyone else...But how does my regular doctor call Trevor Marshall ? I don't know where to find that info...Thanks...
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Mary..Sarcoidosis. 1,25D=56..25D=6..Began Benicar 20mg q3hrs..9/4/05. Granulomas in arms, hips,legs. Painful lymph nodes hips, armpits. Pain in chest,back,head. Avoiding sun/bright lights/Vit D. Using NoIRs
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Reenie
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Posted: Wed Apr 20th, 2005 19:39 |
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Hi Mary,
Let me just say... "first things first."
Yes, you have lots of questions and we can help answer them, but I think you will do best if you concentrate on one step at a time.
Let me explain what I did to begin the MP. This may give you some ideas.
1. I brought the info of the MP into my GP. He was interested, but not so that he was willing to prescribe the meds for me, but he KNEW I was determined to try it and was willing to draw the labs for me.
He ordered the D tests for me from Quest, which is the preferred lab, but since he said he wasn't familiar w/how to read them, he would give me a copy and ask me to post them on the MP site for interpretation, which is what I did.
2. I was on Enbrel for my psoriasis thru my dermatologist before the MP. I told him I was not going to continue this treatment as it's contraindicated, so I stopped seeing him. I didn't give him any explanation other than I was going on a new experimental treatment for my CFIDS.
3. I informed my endocrinologist I wanted/needed to wean off of my hormonal treatments I was on and wanted him to help me and follow up with my labs. I explained the MP to him and he was interested, but not willing to prescribe the meds, although more than willing to order any labs I would need to be followed up with.
BTW, my endo and my GP are covered on my insurance, so the labs they order are a covered expense for me.
4. I contacted an ND (naturopath physician) that I usually see once/year. He was willing to rx the MP meds for me, but is not covered on my insurance.
I go to him about once every 3 mos and bring him all of the labs I get drawn at my endo.
This system seems to work best for me, as I get my MP treatment and my Drs are all "happy" with not being asked to do anything out of their comfort zone.
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Memoking
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Posted: Wed Apr 20th, 2005 20:02 |
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| Yes, thanks, certainly it takes time to figure out all the steps to take, and in which order to do them, that has been a lot of my problem,...i..e..which steps to take and in which order..etc...as I'm sure you understand...so thanks for the info about how you did it..I am going to see my regular doctor tomorrow, I am going to take him the Info and have a conversation with him, he knows I have the Sarcoidosis arm lumps, he is the one who first referred me to get a biopsy from a surgeon, and he is the one who did some of the original labwork,...i..e..the ACE and the calcium tests...and he said the results of the original biopsy were consistent with Sarcoidosis..He didn't know for sure though and he doesn't know much about Sarcoidosis though, so he sent me to a Infectious Disease specialist in another town for a 2nd opinion....and that doctor thought it was Rheumatoid Arthritis nodules, which was not true, that was wrong according to my regular doctor, so then he sent me to a Dermatologist in a nearby town, and that doctor did 2 more biopsies, and I had to wait a couple of months for the results...That is why this has all taken so long to get diagnoses correctly, they had to rule out 1. Rheumatoid Arthritis, and 2. a fungal thing, and 3, a tuberculosis thing or mycobacterial thing..So that is what the biopsies were for, and then they concluded it was "Sarcoidosis" based on the fact that the original biopsy showed "Non-caseating granulomas"...So I started looking Sarcoidosis up on the INternet, and finding all the info I could find..When I found the SarcInfo. com that's when I started realizing this might be the only treatment that would work, so you see it has taken me time to get this far...So, like I said, once my Dermatologist concluded it was Sarcoidosis, he decided to give me Cortisone shots in my arms, which would only stay in the lumps, not go all over my body, because he doesn't believe in giving Prednisone, especially he is against Oral Prednisone..And I agree with him, so I thought he knew what he was doing..But now, I am beginning to think I need to do the MP , and that's because of all I read about the Vitamin D connection and the sunshine, and I have been leaving those off and seeing my arm lumps shrink a little, and I know that when I slip up and have Vitamin D food, even a little bit or a little bit of sunshine, that makes my lumps grow bigger again, and I get some neuro symptoms also...so at least I have learned that much so far..And I am going to tell my regular doctor all this tomorrow, and have him read the info I printed off the Marshall Protocol website..So you see, it does take time, and I was a little paralyzed with fear too, but I am getting a handle on it emotionally, so I am beginning to do more of the steps needed.... I am going to get the NoIR sunglasses too, ..but from November of 2004 to April of 2005, that is how long it took to get the 3 different biopsies that I mentioned and get all the results of the biopsies and start the Cortisone treatments..That's how long it took..so now I am at the beginning of getting the Marshall Protocol going..it's taking so long to get things done, it seems..But thanks for all the support..etc..and all the info is helping too...thanks again..Mary
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Mary..Sarcoidosis. 1,25D=56..25D=6..Began Benicar 20mg q3hrs..9/4/05. Granulomas in arms, hips,legs. Painful lymph nodes hips, armpits. Pain in chest,back,head. Avoiding sun/bright lights/Vit D. Using NoIRs
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BARNEY
Moderator
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Posted: Thu Apr 21st, 2005 05:41 |
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Mary,
Barney here again!
I have been biopsied so many times I have almost lost count, but that has been over 40 years time. One biopsy is all you need to know that you need MP ASAP. Really you don't need one, just your 1,25D test and 25D test. (be sure blood is frozen)
I, too, had bumps all over both arms and legs. They are now gone since I have been on MP. I also was allergic/intollerant to tetricycline but here I am taking 100mg minocycline every other day and not a problem. I do make sure that I take 1 acidophilus every day. That really helps. I have even had an allergic/intollerant reaction to insuln, that is how bad I WAS.
Steriods (corisone shots) are not a good thing.
Please remember that it is your choice what you allow a doctor to do as a treatment. You have every right to say no to the shots or anything else they want to do.
Be informed, read everything you can on MP. You must educate yourself. More than likely, you will be teaching your doctor.
All the moderators on MP and Sarcinfo are great and you will feel very protected under theirs' and Dr. Marshall and your docs care. I never felt safer in my life.
Wish you luck with your doc joining you in MP.
Barney (Phase 2)
ps I now have osteoprosis from all the steriods I was on.
____________________
64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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Memoking
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Posted: Thu Apr 21st, 2005 05:50 |
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Thank you for your answer.. By the way, I am 56 years old...(I look and feel younger though)...I have 5 kids, but only one left at home right now..I have 2 who have already graduated college and have good jobs, and 2 that are still in college..And the one at home is 17, still in high school.
I have found a new doctor that treats Sarcoidosis with the MP...although I would only be his 2nd patient that he is using it on..He went to the Conference in Chicago in March, and he seems to understand it pretty well..He is fairly inexpensive and I would be able to see him as much as I want. The other doctor which I already mentioned earlier in this website is very expensive, but he has more experience with the MP...so I am deciding what to do here.
I am going to talk to my regular doctor tomorrow, but personally I think I would have better luck with the new doctor that is not very expensive, I could see him more often than the doctor who is very expensive. Neither of these doctors take insurance...but they think I could use insurance for the labwork and the meds.>I don't know yet
Thanks for answering me, it sounds like you have had a rough time with all the problems the Sarcoidosis has caused you..I think it is great that the MP is available now..The new doctor I spoke to tonite said the MP is a Major Breakthrough for Sarcoidosis patients.
Thanks.and best wishes..Mary
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Mary..Sarcoidosis. 1,25D=56..25D=6..Began Benicar 20mg q3hrs..9/4/05. Granulomas in arms, hips,legs. Painful lymph nodes hips, armpits. Pain in chest,back,head. Avoiding sun/bright lights/Vit D. Using NoIRs
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Memoking
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Posted: Thu Apr 21st, 2005 06:05 |
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| PS>>>Barney, what is the acidophilus for? Thanks.>>>Mary
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Mary..Sarcoidosis. 1,25D=56..25D=6..Began Benicar 20mg q3hrs..9/4/05. Granulomas in arms, hips,legs. Painful lymph nodes hips, armpits. Pain in chest,back,head. Avoiding sun/bright lights/Vit D. Using NoIRs
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Reenie
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Posted: Thu Apr 21st, 2005 06:09 |
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PROBIOTICS YEAST:
What kind of probiotics should I use?
Won't I develop a yeast infection if I'm on antibiotics long-term?
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Memoking
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Posted: Thu Apr 21st, 2005 06:16 |
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| HI Barney..I just want to tell you I don't know how to do the PM....Can you tell me how to do that? Mary
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Mary..Sarcoidosis. 1,25D=56..25D=6..Began Benicar 20mg q3hrs..9/4/05. Granulomas in arms, hips,legs. Painful lymph nodes hips, armpits. Pain in chest,back,head. Avoiding sun/bright lights/Vit D. Using NoIRs
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BARNEY
Moderator
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Posted: Thu Apr 21st, 2005 06:35 |
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Mary,
Since you will have to pay your doctor, and he already has 1 patient, try him out. You can switch if it doesn't work out. I only see my doctor every 3 months. If you educate yourself and take the advice of the moderators and quit worrying, you will find yourself doing great.
Remember, this is going to kill bacteria so you will have some herx but Aussie Barb is fantastic at walking you thru it. Reenie is great at telling you what you can and can't eat, Meg is an RN and has had sarc and is 95% well and she will step in when needed, Belinda and Lottie from Sarcinfo will step in if they need to and last but not least Dr Trevor Marshall is watching over you too and your doctor can contact him if needed.
I have never felt so protected in my life.
Acidophilus is live bacteria (the good kind). You need to take it daily to keep the antibiotics from killing off your good bacteria. It works great. I use the NOW brand. It is live so you will need to keep it refrigerated and take it at least 3 hours away from your antibiotic dosing.
I do not feel as old as my age sound either. My mind says I am still a teenager, even tho I have 5 great grandchildren. Sometimes, tho, I wonder if I have a mind.
Your doctor is right MP is a major breakthrough.
Up at the top of you post, see MEMBERS, (let's see if the mind will work). When members comes up click on the name and it will give you several choices, click on private message. If it doesn't work, let me know, better still I will send you a pm and you can go thru it also to click into pm's.
Looking forward to you being a fellow MPer and getting better.
HANG IN THERE, WE WILL MAKE IT!!! Barney
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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John D
Member in Phase 3
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Posted: Thu Apr 21st, 2005 19:34 |
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Mary, You have a lot to say.........there are some old ladies on this site that have a hard time reading long paragraphs and small print and they remind me once in a while to take a breath once in a while and add spaces to make my posts more readable.
We try to take our antibiotics without food to get the most bang for our buck. Give that a try first and if you have problems, ask for help. They sometimes suggest taking your abxs with meals if you have to. Your going to be taking Benicar alone initially for a while, and that might set you up better for taking mino. The moderators will advise you.
I believe Dr. Marshall's phone number is posted on his papers and I believe I have seen it on the doctor's and patients tutorials on sarcinfo.com.
You asked about phase 3 for me. I found it was the most difficult phase for me, but phase 1 and 2 went smoothly for me, compared to others I have read about. Everyone has a different combo of bacteria and we get different reactions (herxs) depending on which combo of phase 3 antibiotics we try. I am feeling quite well in the last week, as I believe I am finishing up with one set of abxs, and will soon move on to another, and expect I will feel lousy again then.
I vote for working with your local doc if your insurance pays for it and you trust him and he is open to learning about the MP. Four hours on the road to see the Chicago doc may not be worth the benefit of his MP experience, especially if out of pocket expense is an issue for you. The local convenience may help if you need extra help or have an urgent problem. But remember you will probably have to be very familiar with the MP so you can guide him. John Dresser
Last edited on Thu Apr 21st, 2005 19:36 by John D
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Sarc- Lungs dx (biopsy)1985, pred 3yrs to 88. Begin MP:Feb/04 1,25D=58.1, 25D=18.1 Phase 2: June/04. Phase 3: Sept/04. Clean-up phase Oct/06. April/05: D1,25=13 25-D=6. June06: D1,25=31 25-D=11. Sept07: 25-OH D=18
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Memoking
inactive member
| Joined: | Wed Apr 6th, 2005 |
| Location: | Illinois USA |
| Posts: | 314 |
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Posted: Thu Apr 21st, 2005 20:03 |
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Thanks, John, sorry for the long posts....I am seeing my regular doctor today..However, I have found a new doctor that is using the MP also, he is much cheaper than the Chicago doctor...This new doctor went to the Chicago Conference. I talked to him on the phone last night. He has only had 1 MP patient so far but is very excited about taking more. He seems to know what he is doing. .. So I might go to him, he is only $70 for the 1st visit, and $40 for follow-ups...He is one hour and a half away from me..But I am still going to see my regular doctor and give him the information, perhaps he can also help to monitor me in case of emergencies..I might probably feel more comfortable going to a doctor who knows about the Protocol already. The only difference is that the Chicago doctor has been using the MP since 2003...whereas this new doctor has only had 1 MP patient so far, but seems like he knows what to do..Thanks for writing...Mary
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Mary..Sarcoidosis. 1,25D=56..25D=6..Began Benicar 20mg q3hrs..9/4/05. Granulomas in arms, hips,legs. Painful lymph nodes hips, armpits. Pain in chest,back,head. Avoiding sun/bright lights/Vit D. Using NoIRs
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