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Deedee
Member
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Posted: Sat May 16th, 2009 02:02 |
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Ok--thanks for that info. on the lipids. And you would be OK with the high ALT (liver function)and low WBC, as well, in regard to moving forward?
You don't have to send the links for those, as I have seen them. It explains why I might have these values, but does not address specific situations on whether to move forward or not with certain values.
Thanks for all you are doing, Barney.
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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: Sat May 16th, 2009 02:07 |
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Barney, I took Metformin for a year with no ill effects (that I knew of) but I was not on the MP at that time. I didn't know I had sarcoidosis. After years of hard work, exercise, diet restrictions, weight loss, and the "natural" meds, I got my lipids in perfect parameters. My cholesterol was even less than 200. I was thrilled for about 3 months until I found out I had worse problems that high lipids---I had sarcoidosis. .
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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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Joyful
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Posted: Sat May 16th, 2009 03:44 |
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Hi Deedee. 
You might find it helpful to read Amy's Bacteriality.com article at:
Healing from cardiovascular disease: bacteria, fat, cholesterol, statins, and more
Also, consider these thoughts:
1. Triglycerides can be variable depending on how high your carb levels are in your diet the few days leading up to your test. Do you limit carbs for a few days before your blood tests?
2. Women, especially older women have not had any studies show that high cholesterol correlates with higher rates of disease. In fact there is at least one study that showed women had a higher mortality risk if they had lower cholesterol.
3. Another study I found showed that with acute infections subjects with higher cholesterol had better recovery outcomes.
4. Your HDL seems to be good consistently.
I hope these thoughts are helpful for your decision on how to proceed. 
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Deedee
Member
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Posted: Sat May 16th, 2009 14:29 |
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Joyful, thank you for referencing Amy's site and the article. I know I have read it before but it is funny how when you read it again at a different point in your treatment, it takes on new meaning.
Last edited on Sat May 16th, 2009 14:35 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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banphrionsa
Member
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Posted: Mon May 18th, 2009 23:05 |
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| Did you use to live in Colorado?
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Ph1 Started Benicar 5/20/09 every 40mg6-8 hours/ 50mg Minocycline every 2 days./ 25D 17.5/Started Mod. Ph2 Nov. 11 30mg Clyndamicin every 2 days. 1,25D in the 70s. FM/CFS/Chron Insomnia/Accute Allergy Rhinitis/Hist. of HPV/ Scorisis/General Anxiety and De
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Deedee
Member
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Posted: Mon May 18th, 2009 23:10 |
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Who, me? I have never lived in colorado.
However, this gives me a chance to report the GOOD NEWS that my D25 went from 25 to 15!!!! Test results hot off the press!
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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 May 19th, 2009 00:28 |
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FANTASTIC DEEDEE, GOOD WORK!!!!!!
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: Mon Jun 15th, 2009 03:05 |
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Several weeks ago I started ramping back, staring with 75 mino and 4X per day Benicar. Last week I experienced fatigue, an increase tickle in my chest/ throat. I stuck with my plan to pay close attention to fatigue as IP and stayed at 75 and I am glad I did because I was building up to a left lung IP. Two days ago I started a productive cough (clear and non-infected) and sinus drainage.
Today the tickle is way down, the cough is way day, sinus drainage is minimal and my energy is WAY up. If I didn't know I had sarcoidosis, today I would think I am in great health.
Tonight I am going to ramp to 100 mino.
Just checking in. Doing great and grateful for the MP.
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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: Mon Jun 15th, 2009 03:47 |
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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: Mon Jun 15th, 2009 03:55 |
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Oh--and my WBC came back into normal range. Lupus test normal and 3 month diabetes test normal, too.
I like normal.
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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: Mon Jun 15th, 2009 05:13 |
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Great news!!!!DeeDee,
Drink plenty of water, xtra (sea) salt (regular salt is mostly chemicals), lots of rest while avoiding the sun and avoiding Vit D in your foods!!!!!
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
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Deedee
Member
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Posted: Thu Jul 23rd, 2009 01:23 |
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Some really good news!
Next week is the anniversary of my mediastinoscopy and diagnosis, so I went for my annual checkup.
My PFTs were greatly improved with almost all values over 100% of predicted.
DLCo 140%
CLco/VA 99.25%
FVC 111%
FEV1 120.70%
FEV3 109.20
PEFR 101.93
FEF 25%-75% 121%
TLC 96.76
My Chest Xray showed no lung involvement (there was none seen before) and my lymph nodes were all down except in one place on the left, which he said could still be from the place they took out the lymph node to biopsy (swollen even after a year.)
He said that he agrees with me that I probably have had this for decades. In the early 80's I had a weird CXR which they said could be sarcoidosis or prominate vasculature. That resolved and then in 2001 I had some high calcium levels. He said that frequently people "look back" at symptoms and realized the sarcoidosis had been there for many years.
He said I don't need to come back for a year.
My plan is to move to Clindy for my second Phase II attempt. I am presently on 100 mino and have been there for months. Still having IP, mostly muscle pains, some occasional sinus drainage, tickle in left bronchi and the ever present waxing and wanning of fatigue. I am going to try to start some exercise in the hopes of some improvement on my lipids, which are still very bad. My sed rate was 9 even though my CRP is still high at 4.3.
I was really afraid to go to the appt. I am so thrilled to have a good report. Thank you to everyone for the research and all of your help!
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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: Thu Jul 23rd, 2009 02:07 |
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That is such wonderful news DeeDee.
Keep up the good work.
Karna’s thoughts: Sometimes I just need reminding that it's not about winning the race, it's about just crossing that finish line.
Drink plenty of water, xtra (sea) salt (regular salt is mostly chemicals) as needed, lots of rest while avoiding the sun and avoiding Vit D in your foods!!!!!
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
[code]
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Caitiegirl
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Posted: Fri Jul 24th, 2009 01:47 |
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DeeDee
I was reading over this thread and wanted to say Congratulations on getting your D down. I also wanted to note that a couple of years ago independent of the MP I had a slightly elevated ALT reading. My doc wasn't too worried because he said typically it was a fairly high reading which caused medical concern but he had no clue why it was just slightly elevated. A couple of months later I decided to google it and found a newly released study from UNC-CH that Tylenol could raise ALT levels slightly even in healthy people. The weird thing was that it didn't take much and the elevation lasted several days after the Tylenol was stopped. I also found that environmental toxins and junk food could raise the values according to some sources.It just sounds like the ALT reading is very sensitive in some of us. Just think what a total bacterial dump would do to something this sensitive. Good Luck!
Mindy
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19 yr old lyme, seizures, myoclonus, digestive problems chronic headache, mental fog: 5/19 25D <5, 25D 36 1,25D 58 10/23/07, Cut sun & D 9/26/07 Benicar 10/25/07, NoIRs 10/29/07
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Deedee
Member
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Posted: Fri Jul 24th, 2009 03:55 |
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That is really interesting about the ALT. I don't take tylenol or eat junk food, but I still have not given up coffee. I wonder if that could be it??? I guess anything that is hard for your liver to process could be a problem.
Even though the chest lymph nodes are not showing up on the chest x-ray, I can feel them tonight as little pinches in my chest around my breast bone. I do think we have signs and symptoms of the disease even when it is sub-clinical. I am looking forward to the day that the lab tests are normal and the symptoms are all gone. I feel I am on the right path for that to become a reality.
Just a note for anyone that is starting and worried about their BP. The first 6 months mine was low (like 80/60) and today it was 110/60 so I think our body adjusts and part of the reason the BP falls early into the MP is due to IP and your body adjusting, and not the benicar. The benicar reduces your D125 and shakes up your hormones and all of that can make you feel dizzy and have low BP.
I also forgot to mention that all of my neck lymph nodes are normal now.
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Deedee
Member
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Posted: Mon Aug 10th, 2009 21:07 |
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Reporting in:
Modified Phase II
Benicar Q6H
Mino 75 mg
Clindy 18mg every 4 days.
Started out very cautiously with Clindy, as I experienced a slam with Zith (very swollen lymph nodes, high BUN, fatigue, anxiety, etc...) and I was concerned about the pyschiatric symptoms some people have reported with Clindy. The guidelines said you can use very small amounts of Clindy and space out the Clindy longer than every other day. I guess that was a good move because after taking Clindy for 3 weeks (twice a week) and started with increased IP when I ramped to 75 mino with the 18 Clindy. I wasn't sure if I was getting a cold or IP when I started sneezing alot about 4 days ago and began feeling some tightness in lungs and tickle in throat. I think now it is IP, as my lymph nodes under my ears and in neck went from normal to very swollen over about a day. I have a raspy throat, dry cough, fatigue and a bit of anxiety. The fatigue is back, along with aches and pains especially in legs and feet. Fortunately, because of my last experience with intolerable IP, I now know that the anxiety is related to the IP and I can calm myself down pretty quickly. I also know that the swollen lymph nodes mean bug-killing is going on.
I did not take my Clindy that was due yesterday and I am backing back off and going back to 50 mino until the IP calms back down.
I am thinking that once it calms down I should start back at 25 mino and the Clindy again, unless someone thinks I should drop the Clindy, go back to Phase I and ramp back up to 100 mino alone, and then try Phase II again. I suppose either way might work.
Overall, feeling very positive.
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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: Sat Aug 15th, 2009 13:32 |
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Reporting in:
Mino 50
Benicar Q6
Kicked back from Mod Phase II due to lymph node IP.
My lymph nodes are still in an uproar and I noticed overall swelling today. My ring was too tight and I had to remove it. Yesterday I toko a 4 hour "nap" and slept 9 hours that night. My back hurts-feels like muscle pull. Yesterday I had leg, feet and arm aches that felt "flu-like." Belly swollen--pants waist tight--wondering if that is abdonminal node swelling. So far only one small spleen jab. No coughing, or cold-virus signs like runny nose. One day last week I had pins and needles on the bottom of my feet. Ears popping probably from the nodes. I can feel a little activity in my chest, like my nodes are upset in there, too.
It is tempting to experience this as a set back, so this morning, when I was walking up a hill looking for a missing chicken, I reminded myself that I can breathe deeper than I have been able to breathe as far back as I can remember. I am trying to resist anxiety that it could be a flare, and see that worry as anxiety from not feeling as well and IP. Looking forward to being distracted with a visit from my son and daughter-in-law. Focusing on "gratitude" this morning, for all of the many blessings in my life.
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Joyful
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Posted: Sat Aug 15th, 2009 16:05 |
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Deedee,
Gratitude is the gateway to restoration on any day.
Just to share a little reminder from my 'library' as you seek tolerable for you...As the implications of the fact the awakened immune system is producing the most effective antimicrobial activity slowly sink in, everyone comes to the realization that it is never of any benefit to push the dosing of the antibiotics past a very tolerable level of IP/herx.
So, if your IPs are significant, ramping is never recommended. And the guidelines no longer state the maximum dosages are to be reached by all on the protocol.
If you stress your body from IP you may just well find yourself 'going backward'.
I understand that gentle movement can assist the lymph to clear.
Good that you have the family visit to look forward to.
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Deedee
Member
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Posted: Sat Aug 15th, 2009 16:22 |
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Thank you for your post, Joyful. If the lymph nodes don't reduce in size over the next few days, I will either space out to every 3 days at 50, or drop to 25 for a while. The last time this happened, I dropped to 50 for 2 months and everything calmed down.
When I start back on Clindy, would it be in keeping with the protocol to perhaps start out with 18 once a week?
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Joyful
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Posted: Sat Aug 15th, 2009 17:28 |
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Yes, that is within the guidelines. That may be just right for you.
When I was still clinging to the hope I could keep taking it last spring I was down to 8mg per dose. It is not like the Mino where it is advised to keep with 25mg steps.
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