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JoshR
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| Joined: | Mon Aug 18th, 2008 |
| Location: | NSW, Australia |
| Posts: | 445 |
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Posted: Wed Nov 19th, 2008 13:31 |
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Just to warn you, I find that the IP is worst in the last 2-3 days of the 10-day cycle. Enjoy the good days while they last! 
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5/6 CFS criteria, 125D36 Ph1Jul08 Ph2Sep08 Ph3Feb09 25D8(Sep08) NoIRs covered up (except hands) low lux home minimal light exp r/t work
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Deedee
Member
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Posted: Wed Nov 19th, 2008 20:01 |
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Thanks. I appreciate all the tips, encouragement and advice given. I was really tired last night and fell asleep sitting up. I woke up with cramps in my legs, hips and arms. Today I feel good again, with my lymph nodes hurting some but a decent energy level. It is the strangest journey....
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec0| ModPh2July10| 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09) 25D11 (Mar10)
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Deedee
Member
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Posted: Sun Nov 23rd, 2008 00:11 |
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What a relief it is to have pretty much stopped the coughing and my lymph nodes are not hurting me today at all. I can breathe deeper with less "tickle" and no pain or wheezing. I am breathing better than I was prior to diagnosis and MP, when I thought that my tight lungs/chest and wheezing was due to mild asthma. I now think it was all related to the sarcoidosis and my "extensive lymphopathy" and wonder how valid the asthma diagnosis was. The MP is taking care of my lung and lymph node problems and, as an added surprise benefit, the supposed "osteoarthritis" (sarcoidosis too?) in my left thumb is also decreasing in size and soreness. I am so encouraged.
Now the IP seems to be mainly in my legs, feet and hips. I have been having leg and feet cramps for years and thought it all stemmed from plantar fascitis, but now I hear that this type of pain is very common with sarodcoidosis. I see that some MPers take magnesium to help with the leg cramps and I wonder if this is something considered pallative with MP, so that I might try it?
I read a note on MP by Joyce Waterhouse that taking calcium and magnesium can help prevent bone loss when you do not have enough of these in your diet, and I do see a number of MPers list these supplements as ones they continue to take.
I also wonder if I need to have my calcium level drawn prior to staring calcium? I had several high calciums about 6 years ago, which we monitored and it normalized. I imagine my D125 was really out of wack at the time and I didn't even know it. No one checked that...we did a "watchful waiting" approach.
I have great admiration for those who had the courage to try out the MP when it was still a theory and then paved the path to this proven protocol for all of the rest of us, and thank you to Dr. Marshall and the entire research team.
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec0| ModPh2July10| 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09) 25D11 (Mar10)
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Julia
Member
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Posted: Tue Nov 25th, 2008 15:06 |
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Great to hear of the improvements in breathing, Deedee 
Look up 'Calcium' and 'Magnesium' in the ABC FAQs and see if that answers your questions. If not, get back to us.
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good!Julia's story
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Deedee
Member
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Posted: Tue Nov 25th, 2008 15:32 |
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It answers most of my questions, Julia. Still a bit fuzzy still on the dose, but I started 1000 calcium, 200 2X a day pure quercetin and 200 mag at night (2 hours before mino). I started the mag 2 days ago. I tried to figure out the dose by reading about 60 posts.
I still don't know if I should have had calcium levels drawn prior to starting or if I need to have them drawn more often, or if Calcium leaching from bones has anything to do with serum calcium from supplements or not.
I faxed a copy of what I am doing to my doctor and told him to get back with me if it is not OK.
No leg cramps last night. We will see how it unfolds. Thanks for your reply.
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec0| ModPh2July10| 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09) 25D11 (Mar10)
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Julia
Member
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Posted: Tue Nov 25th, 2008 16:16 |
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Asking doc is exactly the right thing to do. For the benefit of others I'm quoting the most important bit of the FAQ on calcium: Supplementation isn't necessary unless your diet is deficient. Then, be sure to take only the amount needed to equal the RDA of 1000-1500mg/day of calcium with both food and supplement combined.
Do not consume more than 500 mg of calcium at any one time (i.e., take in divided doses). When eating a meal with food containing calcium (e.g., cheese or yogurt), decrease the amount of calcium supplement you take so you do not go over 500 mg at that meal.
Here is a fact sheet on calcium. But of course when reading it ignore the recommendations about vitamin D!
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good!Julia's story
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jcwat101
Research Staff
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Posted: Wed Nov 26th, 2008 04:30 |
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That is right about asking your doctor.
You will note in this FAQ that it says one should consult one's doctor if one has a history of hypercalcemia or hypercalciuria, when contemplating taking calcium.
Do I need to take a calcium supplement to prevent osteoporosis...
Joyce Waterhouse
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20 years with CFS/FM/Lyme/IBS, MP info: http://mpkb.org, food/supplement/medication allergy/sensitivity info: http://SynergyHN.com
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Deedee
Member
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Posted: Tue Dec 9th, 2008 18:34 |
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I am a bit freaked out and I need some pointed advice. I started Phase II with 1/2 the usual dose due to concerns about IP (this is in the guidelines and I OK'd it with the Dr.) Things were doing pretty well until the about a week ago, I notice my chest lymph nodes hurt more. This was a week prior to my increasing the mino back up to 100. Strangely, my chest lymph nodes are hurting less today but my neck nodes and especially those under my ears and even more on the left side under ear is quite swollen. The massage therapist told me today that my lymp node behind my left knee is also swollen. She said she had never noticed my neck lymph nodes being so swollen (I see her once a week.)
I am taking 200 mg Querticin 2X per day; 500 Calcium 1X per day; 200 Magnesium; 100 mino plus Cylce 4 of phase II antibiotic, aspirin for leg pain Prn. The supplements were for leg cramps that were bad enough to wake me up. There is some improvement there. My cough is considerably better, now it is only occassional and sometimes productive. My main IP over the last month has been leg/foot/arm and hand cramps, fatigue, and lymph node pain in chest. .
I am having negative thoughts---is this really lymphoma or lymphoma on top of the sarcoidosis, is it getting worse because my sarcoidosis is very aggressive, am I progressing rapidly, will the lymph nodes interfer with my breathing/my heart, is this normal IP or a danger sign, etc...
Your wisdom and guidance would be greatly appreciated.
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec0| ModPh2July10| 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09) 25D11 (Mar10)
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JoshR
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| Joined: | Mon Aug 18th, 2008 |
| Location: | NSW, Australia |
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Posted: Tue Dec 9th, 2008 18:56 |
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| The lymph nodes beneath my jaw became very painful early in Phase 2. They haven't been that bad for quite a while now, though some slight discomfort in that general area is common IP for me.
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5/6 CFS criteria, 125D36 Ph1Jul08 Ph2Sep08 Ph3Feb09 25D8(Sep08) NoIRs covered up (except hands) low lux home minimal light exp r/t work
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Deedee
Member
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Posted: Tue Dec 9th, 2008 19:33 |
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| Thanks for the quick reply and your reassurance. Is there something I can do to lessen the swelling? What generally causes this?
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec0| ModPh2July10| 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09) 25D11 (Mar10)
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JoshR
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Posted: Tue Dec 9th, 2008 20:53 |
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Lymph nodes become swollen as part of the immune system's response to infection. So I'd take it as a sign that your immune system is becoming more active.
I'm not sure if anything can be done about it. I just took some painkillers and waited it out.
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5/6 CFS criteria, 125D36 Ph1Jul08 Ph2Sep08 Ph3Feb09 25D8(Sep08) NoIRs covered up (except hands) low lux home minimal light exp r/t work
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Joyful
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Posted: Wed Dec 10th, 2008 06:11 |
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Hi Deedee,
I hope the following ideas provide you with a little more peace of mind.
Of course, 'freaking out' is in itself one of my favorite IP/herx symptoms personally. 
When this first happened to me, I found it helpful to look online for a medical explanation of how the lymph system of the human body works.
Anyway, as I understand it, all that debris left over after the pathogen-harboring cells are 'de-activated' (eaten? by the macrophages) must be processed through our lymph system.
Also, it's important to note that the lymph system does not circulate without activity. You have to move your body in order for the lymph to circulate. (Or get a massage, but I've had that add to my symptoms before too.)
So, if there is a good die-off going on and/or you are inactive, you may notice your lymph system getting 'full' until the organs that process that lymph (liver/spleen?) are able to 'catch-up' and clear out the excess. (I think that's right.)
When my lymph system is 'backed-up' I will feel the fullness mostly in my chest, neck, and jaw-line. It usually happens the day after the antibiotics did their job (strong IP/herx days).
Another clue for me is when either or both arms being numb when I wake up. The thought is that maybe the swollen lymph builds up during your inactive time (sleeping) and puts pressure on the nerves leading to the arms. The 'numb arm' symptom will clear for me after I get up and move around for a while.
There are two things I do when this lymph swelling happens to me. - One is I back off on my antibiotics, or take other measures to slow the rate at which my immune system is doing the killing.
- The other is to make sure to do gentle movement activities to help the lymph system clear itself.
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JoshR
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| Joined: | Mon Aug 18th, 2008 |
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Posted: Wed Dec 10th, 2008 13:55 |
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Aussie Barb pointed out to me that we do have some FAQs on lymph nodes, so here they are:
My lymph nodes are growing. Is this normal?
How does the lymphatic system work?
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5/6 CFS criteria, 125D36 Ph1Jul08 Ph2Sep08 Ph3Feb09 25D8(Sep08) NoIRs covered up (except hands) low lux home minimal light exp r/t work
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Deedee
Member
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Posted: Mon Jan 26th, 2009 05:14 |
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I am in the middle of Phase II and doing very well and I am enjoying a lot of improvements.
My sister has been diagnosed with an IGg genetic immune deficiency. She gets chronic sinus infections and she is a MRSA carrier. She plans to visit me for 2 weeks in the summer. Before I had sarcoidosis, I felt like I had a healthy immune system and I didn't worry about getting MRSA. Now I am worried. Her granddaughter, who she is raising, is also visiting and she is a carrier too.
Can you give me some advise? I am afraid if I get it I will end up in the hospital and I have read that this could be deadly for me. Is there a way to protect myself with her in my house? Isn't MRSA everywhere anyway? Last edited on Mon Jan 26th, 2009 05:16 by Deedee
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec0| ModPh2July10| 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09) 25D11 (Mar10)
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Chris
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Posted: Sun Feb 1st, 2009 18:30 |
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IGg genetic immune deficiency.
I was told I had such a deficiency, as IGg would be 0. Then, about 4 years into the MP, the IGg numbers started to come up. They are still below average, but about half way up from 0.
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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Deedee
Member
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Posted: Mon Feb 9th, 2009 19:49 |
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Thank you chris.
I am in mid-Phase II and I seem to keep gaining weight. I have gained 15 lbs since starting MP 7 months ago (25 if you count the weight I lost after not being able to eat for a week post mediastinocopy.) I don't eat junk food or drink cokes or anything unhealthy. I avoid carbs except for oatmeal in the morning (no sweetener on it.) Also noticing swelling (eyes, fingers, face) and enlarging abdomen. My waist is now huge. Is this something that can sometimes happen? I am miserable in the weight department. All my fat pants are tight. I am not moving around a whole lot, which I know can contribute, but I do muck the barn most every day which is real exercise. I have tried walking at the Y, doing row machine and bike for 35-40 minutes at a very modest pace, but then I am wiped out the next day. I am breathless walking up hills, which I don't know if it is from the lymph nodes or my expanding girth. I was on metformin prior to MP due to insulin insufficency and it helped me lose weight. Is this contraindicated on MP? I have read that you should go off it, but then other places some list they have continued to take. Any insight would help me.
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec0| ModPh2July10| 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09) 25D11 (Mar10)
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Barney
Moderator
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Posted: Tue Feb 10th, 2009 04:24 |
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I have been on insulin while being on MP, I believe that diabetes meds are okay with MP.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
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Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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Deedee
Member
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Posted: Tue Feb 10th, 2009 04:44 |
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| Thanks Barney. I believe it was on the "do not take" list. I do not have diabetes but I do have insulin insufficiency. My lipids were just out of control 3 months ago.
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec0| ModPh2July10| 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09) 25D11 (Mar10)
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JoshR
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Posted: Wed Feb 11th, 2009 23:51 |
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| What should I do about my high cholesterol and/or triglycerides?
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5/6 CFS criteria, 125D36 Ph1Jul08 Ph2Sep08 Ph3Feb09 25D8(Sep08) NoIRs covered up (except hands) low lux home minimal light exp r/t work
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Joyful
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Posted: Thu Feb 12th, 2009 08:22 |
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Hi Deedee.
I don't know if you had this question answered yet...
I used the search box (upper right on the page) to find this link for MRSA + minocycline: What should I know about Minocycline?
Just scroll down the page until you find the Acute infections section (just below the Camels cartoon) for why Minocycline is one of the few antibiotics that works with MRSA. 
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