First of all ... I do not know why I ever complained about not sweating! I had daily & nightly fevers in Sept. Sweating was the way of my existence and drinking water was all I could think about as my thirst was so great. This past month the fevers are letting up. I only sweat a few hours a day usually after dinner or during the night. Occaisonally now I skip a day or maybe two or three at the most. Just when I think the fevers and sweats are going I get hit again. So this has caused me to stay home indoors a lot the past couple months cause my nap time is definitely therapeutic. By afternoon I am drained. However, I jump at the chance and have managed to drive two or three days during the good hours of my better days. Otherwise I think I would go stir crazy.
I don't want to sound too bad off to you as I write this blog entry. I have had some great improvements this month. My light intolerance is becoming less restrictive. My dear hubby took the covers down off our skylights for the first time in 4 years! Wow! I can handle it just fine. My eyes are no longer turning bright red, burning, and tearing. I don't have the secondary porphyriai reactions as strong so am able to tolerate natural light much more. On top of all this good news ... for at least a week now my gallbladder has not been sore or had stabbing pains, spasms, etc. What a relief! 
So while my eyes, sinuses and gallbladder have improved my immunei system has been targeting my bronchial airways and now my lungs. I have had bronchial spasms for weeks and had difficulty speaking. When that let up my lung lobes began to ache at times. I spent most of October coughing up heavy thick globs of mucus. (sorry) But my lungs were clear until I took Minoi for over a month. So I think this is important to note. This has diminished the last week however so I am hoping that phase is coming to an end.
I did have another eruption of scalp sores which are healing now. But the past couple of weeks my hair is falling out. I do not mean tufts of it but after I bathe every other day there is about a thousand strands each time that have come loose covering the bottom. At this rate I don't know how much hair I will have after a few months of this. Yikes! Good thing I started with thick hair, huh? Maybe that will give me some leeway? Hope so. 
While sick the last few years I developed a lot of spider veins on my ankles, under my nostrils and some varicose veins in my left leg. These flared up very badly last week so that my nose prickly itched, my ankles were swollen (first time ever) and burning and my left leg veins were quite painful. My wrists and fingers and knees still continue to be painful especially if I over use them. Shoulders and elbows at times but not as bad as previous treatment made them. That was torture!
Yesterday I had a really bad day with chest, lung, esophagus and upper back pain. I have gotten so congested I thought I was getting pneumonia. I admit I toyed with the idea to take some Azithromax to combat it. But I didn't want to end up worse off if it didn't work that way for me. My BP was high and I had skipping heart beats so it ended up I took ibuprofen again which seemed to really help. Slowed my immune system down. Feeling much better today so guess my immune system targeted this area for a big kill. Yesterday I had woke up covered in sweat on my back and chest. That should have been my first clue. 
More moppers please.
Hope this will help someone else reading how it is going for me at two months of daily 100 mg. doses of Mino. I think I have really brought down the bug load. (I do realize I have lots more) I am overall feeling more wellness with more windows of being somewhat normal between the fevers, etc. I am hopeful I will be able to take Azithromax soon. Things are slowly calming down it seems to me. Of course ... I'll give it more time to be sure. Yesterday's episode showed me I am not ready.
I am so very thankful for all of you here sharing your experience and knowledge. Reading your posts has given me many insights. I cannot imagine where I would be now if I had not started NAC in April, then the recommended supplementsi and then finally started Mino 9/04/08. I feel such relief that I don't have symptoms in the middle of the night from toxins that make me feel like I am dying anymore. Other than waking up to take charcoal and use the restroom I sleep like a baby most nights. Except my DH says I snore. Ooops.
Be well. Be hopeful. Be diligent using those moppers! Miying 
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FM dx 2002. Started 2008: NACi 4/19 (2400 mg daily 7/21) Start list supplementsii + Iodoral 12.5 mg. daily: 6/19 FIRi sauna, 9/4 100 mg Minoi, 11/3 Azith - 12/1 MWF - 1/5 100 mg Mino
Miying, when you feel
Miying, when you feel confident that your condition has stabilised somewhat you will have to up the dose to 200mg a day before you add another bacterostatic. I think from what you write that you are approaching that time. It is great that one antibiotic has got you as far as it has, but you don't want to risk Cpni becoming resistant to it so you need to keep that in mind.
The reaction to doubling the dose should not be as bad as what you went through when you started, but it will take a few weeks to get the picture.
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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006
Way to go MM! Sounds like
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On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithromy
Thanks Michele ... Yes, it
Thanks Michele ... Yes, it is true I am taking 100 mg. of Minoi daily. I won't double it until after I add Azith. My plan is to add the Azith on a Mon., wait 2 weeks, if OK then take Azith both Mon. + Wed. wait 2 weeks. Then according to my response go from there. Hopefully adding in the Fri. The reason I am focused on adding Azith is I believe I need two different types of antibioticsi working together ASAP so that 1.) resistance does not occur. 2.) reproduction is stopped.
I really don't see any benefit doubling my Mino for my next step. I will do that step after I successfully add the Azith. If you see any holes in my thinking than please do fill me in. Maybe I am missing something? Thanks for checking on me. Slainte! MM
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FM dx 2002. Started 2008: NACi 4/19 (2400 mg daily 7/21) Start list supplementsi + Iodoral 12.5 mg. daily: 6/19 FIRi sauna, 9/4 100 mg Minoi, 11/3 Azith - 12/1 MWF - 1/5 100 mg Mino
Thanks Marie. Going through
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FM dx 2002. Started 2008: NACi 4/19 (2400 mg daily 7/21) Start list supplementsi + Iodoral 12.5 mg. daily: 6/19 FIRi sauna, 9/4 100 mg Minoi, 11/3 Azith - 12/1 MWF - 1/5 100 mg Mino
Hey MM,hellooooo
Hey MM,
hellooooo sunshine! that is awesome news! Building up slowly, listening to your body is a wise thing to do.
About the scalp sores, do you think they are linked to the gut & good bacteria. That is what I was told. I think it was Daisy who put me on to grapefruit extract with some warm water which help keep them down to a dull roar.
We walk a very fine line & we juggle alot of balls at once. Every once in a while I will bust out with more sores on my head & acne on my face at times as well.
I know about the sweating, yoi! between peri menopause, natural hormone controlled I didn't know what was going on! Thankfully, it has abated some as I was having 2 shower days & as we know, that takes more energy from the cup that might not even be half full
anyway, march on! You are in my prayers & we shant underestimate the power of that alone.
pea ce
r
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CFIDSi/ME 32 yrs, FMSi,
IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, Full CAP 6-2-08, all supplementsi +Sea Kelp, Chitosan Pulse 16 1-4-09 1gm Flagyli/day-3 daysHello r .... Interesting
Hello r .... Interesting thought about gut & good bacteria linked to it. Never would have thought it but I can see some merit in it. Also the suggestion about the grapefruit extract in warm water sounds interesting to try. Will see how your remedy works for me. Thanks!
I just switched probiotics. I started taking Pearls last week so something would actually get in my intestines and it really helped. The runs stopped! Yay! So perhaps my scalp will benefit too?
Yeh, I went through menopause and it was crazy sweating like that. Still maybe am having a hot flash or two cause when I was sweating once my temp 97.6 F. But mainly I have been feverish with my temp around 100 F and I felt sick as well. Speaking of showers ... I was going to take one before the sun goes down and the house cools. I better get at it now.
Hope you are doing well. This is a crazy life for sure but I trust God has a purpose for it. May He give you strength as you feel joy in Him. MM
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FM dx 2002. Started 2008: NACi 4/19 (2400 mg daily 7/21) Start list supplementsi + Iodoral 12.5 mg. daily: 6/19 FIRi sauna, 9/4 100 mg Minoi, 11/3 Azith - 12/1 MWF - 1/5 100 mg Mino
MM- great to hear your
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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3
Thanks Jim K ... it is
Thanks Jim K ... it is wonderful to enjoy the light once again. Just in time for the dark days of winter coming so will be more so appreciated. MM
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FM dx 2002. Started 2008: NACi 4/19 (2400 mg daily 7/21) Start list supplementsi + Iodoral 12.5 mg. daily: 6/19 FIRi sauna, 9/4 100 mg Minoi, 11/3 Azith - 12/1 MWF - 1/5 100 mg Mino
Hi Miying,Your posts are
Hi Miying,
Your posts are always a complete delight to read. And reading of your progress makes the reading all the better!
Here's to your continued good progress...
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Treatment for Rosaceai
I am actually blushing ...
I am actually blushing ... thank you for the lovely compliment, Red.
I really do appreciate all the work you put in here posting the most interesting articles on vit. D, cathelidin's, etc.
I am doing an experiment now. Last night I quit the milk thistle, boswellia, and tumeric to see if it made any difference in how I feel. I am using moppers and ibuprofen to hold down my inflammationi. It is too soon to get a big picture but so far I am feeling better not worse.
Thanks for sharing and keeping us on top of such things. Whodda thunk it? LOL Slainte! MM
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FM dx 2002. Started 2008: NACi 4/19 (2400 mg daily 7/21) Start list supplementsi + Iodoral 12.5 mg. daily: 6/19 FIRi sauna, 9/4 100 mg Minoi, 11/3 Azith - 12/1 MWF - 1/5 100 mg Mino
MM- blushing? Are you sure
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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3