Presently I have been on Minocycline for over two weeks. The inflammation has been increasing in small increments daily. I was not keeping on top of the load of toxins/porphyria with my usual doses of glucose, Emergen-C and charcoal. So a couple of days ago (9/20) my recent supplement order was delivered which included some Yaeyama Chlorella to try out. Only after two days of use before lunch I am impressed of how effect it seems for me. It is the perfect pre-lunch mopper. Which is a time of day I really need help. It is when it is not convenient to take any of the other moppers I use. But to be clear, I definitely will continue all of them at the usual times I take them as well. I can tell staying on top of this is key to my functioning at a level acceptable to my nature.
I have felt the Minocycline working hard in my knees and the vessels/arteries around this area that have been chronically inflamed the last couple of years. Cardiac arrhythmia kicks up from time to time. Also my feet and hands/wrists and shoulders have flared up. Nothing unbearable although I do get plenty stiff and sore along with the burning pain that comes and goes. My eyes and bronchials also continue to go through cycles of irritation. So I quite well know the battle is raging on. I have attempted to write this blog entry several times lately but until today the fatigue would stop me in my tracks and I would retreat to my nice cozy bed for another short nap. I am really behind on my work now so I better get back to it. Just wanted to get this posted before any more time elapsed.
I have tried to keep up with reading the posts here at least. Your replies often educate me further in surprising ways in this ever expanding sea of victims. Those of you braving worse conditions give me pause as I witness your strength to continue fighting on. Those of you sharing unique insights give me much more wisdom in my own battle as well. I can't tell you all how many times your words have touched me one way or another. I just want to share my gratitude that you are all here as well. As you know ... it is a very lonely disease. Slainte! MM
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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 FIRii sauna, 9/4 100 mg Minoi, 11/3 Azith - 12/1 MWF
MM, It might be a lonely
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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
Pleased to hear that the
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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
For me, I also take
For me, I also take chlorella, not for any porphorin reducing effect because it had no efffect on that CPni related toxin for me, but because it is a way to get in more greens, more chlorophil and other neutrients into my gut regularly. Chlorella has caused me no problems that is for sure. I use the Source Naturals brand of Yaeyama Chlorella comes in a 200 mg tablet - 300 tablets (local cost to me) is $13.05.
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Louise CFSi,CPNi+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai +fattyEndotoxins HS PRN, Wheldon CAPi 6/07,all supps, Doxyi 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM
I also recently started
I also recently started taking Yaeyama Chlorella, also the Source Naturals brand. I ordered one bottle of 300 from Vitacost. I've taken it for about 3 or 4 days.
The first time it seemed to give me a lift the next morning. The second time I didn't notice anything. The third time I had some bad porphyriai after taking it. To be fair, it might have been do to food that I had eaten shortly beforehand. The last time was more like the second time in that I didn't notice anything.
My timing of taking it has been late in the afternoon or in the evening before bed. I haven't been consistent about when I've taken it and probably should focus on that and be consistent.
In any case, I'll post again about it if I have something else to report.
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all my best
John
RRMSi/EDSSi was 4.5, 5, now 6 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily 08/19/2007.
Added INHi 300mg/daily 03/17/2008stopped 05/08Hi John, I would say that
Hi John, I would say that anything that you are taking with the intention that it is absorbant of pophorin and other fatty toxin substances is that the effect is not immediate, the level of unwanted substance is at a level such that it will take a consistent application over time to reduce the amount of the unwanted fatty substances, buy this I mean days to several weeks of one time a day cholestyramine for example. And if charcoal can do it again it will take again days to weeks for it to absorb enough of the fatty matterial to reduce your load of that type of reabsorbable toxin that circulates into the bowels and gets reabsorbed.
In my humble opinion and understanding of course.
This CAPi treatment is not easy but is the only thing that has worked for me, keep on, keeping on.
Louise
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Louise CFSi,CPNi+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai +fattyEndotoxins HS PRN, Wheldon CAPi 6/07,all supps, Doxyi 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM
Interesting and timely
Interesting and timely replies. Thank you for sharing them with me & those reading here. Today I woke up with worsening stiffness in my shoulders, neck and hands. So perhaps the two-three day reprieve was not entirely from the chlorella? ... or the good feelings from it were temporary? Not at all sure now.
You see ... I had forgotten I had increased my vit. D dose since it is getting darker with days shorter plus cloudy weather. Am not outdoors as much nowadays. This added into the mix at the same time makes things murkier. Not that we ever really know exactly what is going on inside of us.
However, I do agree it does have benefits inspite of my increased stiffness and pain today. As you have mentioned ... it soothes my digestive tract with all those good chlorophylls ... I too feel good about it as I don't eat enough green veggies on a daily basis. Another thing is my gallbladder was getting more tender. It is feeling better today at least which is a worry off my mind. I was so afraid the Minoi would put me back into gallbladder attack zone again.
On that note ... the Mino is really playing havoc with my joints & various muscles or tendons. I agree it is good to know it is working. But I am telling you I am really enjoying whirlpool therapy and FIRi sauna all the more now. Sometimes it is difficult to move out of my chair if I sit awhile. Keep moving is very important to work out the kinks I find. Feeling ancient at times is not where I wanna be. LOL
Yes... I too purchased the Source Naturals Yaeyama 200 mg. 600 tablet bottle from Vitacost for $13.75. In my past readings I had made note that it was the one you all were using and it made sense to me when I read about it.
Thanks.
The main thing in taking it before lunch for me is then later after lunch I am no longer nose diving before dinner. So perhaps it has more to do with blood sugar levels along with the toxin reduction via digestion. Not sure. I just know I am less fatigued and cross in the afternoon now. Plus I don't feel so toxic in my gut after lunch. I have more energy which enables me to keep working instead of napping. I do like that a lot!
Also I haven't seemed to need glucose as often which is good I hope. My middle is getting way too flabby! Do not like the spare tire look on me. You don't suppose increase stiffness and pain is from cutting back on the glucose do you? More likely the increase of vitamin Di ... right?
Hoping this day brings unexpected joy to your hearts. 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
Update 9/27. Well, by
Update 9/27. Well, by Thursday my bladder was hurting and I was frequently going P.... so Friday I ran up to my physician for a test to see if the UTIi came back. NOPE. So that is very good to know. Ordering some blood tests this week to see if anything shows up.
Now I am trying to figure out what happened to me. I got very sick by Wed-Thurs. So began making sure I used more glucose which helped. So either the extra vit D did trigger more immunei response or the combo of the vit D + the chlorella. Does anyone know if chlorella has much vit. D in it? Maybe I added more vit D than I meant too by doing both?
Anyhoo.... things have settled down as far as my bladder. My fingers and wrists stiff & painful about kill me when I wake up in the morning. At times I have trouble lifting my cup when full. Reminds me of 20 years ago when I was taking guitar lessons. I had to quit because of this same resulting stiffness & pain .... first indication of myalgia changing my life. Shows me how long I have actually had this illness.
I have high blood pressurei everytime it is checked the last several months... typical readings such as .... 190/80, 140/85 Wondering to myself if I need to take Benicar once a day or Ibuprofen twice a day. DH votes for Benicar cause my liver did not like Ibuprofen in the past. Some months ago my doc told me my high BP is from my bacteria load. Makes sense as the first reading was when I was very sick from the Staph UTIi and the second reading is from recent visit. I was not as sick but was not feeling great. My BP when on MP was not usually above 118/80 and usually much lower.
Been on Minoi for 23 days and symptoms of inflammation keep getting worse.... wondering if this is typical. Wondering if I ever will be able to take Zithi? Fighting the usual emotional roller coaster ride... so I do know I don't do anything now. Need to slow down inflammation. May order the cholestyramine next to see how that works for me.
Want to add finally that I did have several hours of uncharacteristic energy today. So of course in order to catch up I spent it all! Now I am dragging again. But I have the satisfaction of getting some outdoor chores done that can't wait for winter to swoop in on us.
Hope you all are hanging in there.
This is NOT easy & I hear it gets worse!
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
Haven't posted about this,
Haven't posted about this, because I can't remember the reasoning that was given for it. But, several months, ago, I had asked my LLMD about using Yaeyama Chlorella. He warned me. Telling me that he had nearly passed out when he tried a low dose of it. Said that it was because it is dangerous when taken at lower doses, than it is in higher doses. That I needed to start off with a high dose of several caps, not just one or two. Have been racking my brain-fogged brain, ever since, trying to remember why. If I find out, will let you and others, know.
Hope that it all will get easier for you!
--Minai
RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. GAD-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY. LDNi 4/07. 1st Tinidazole Pulse, 8/11/07. Keflex 2/08. IV Rocephini 3/08. IV Clindamycin 5/08.I would be very interested
I would be very interested to hear what he said when you get the chance to review it with him, Minai. What is a low dose? I took 10 caps ... hmmmm --- label says amount per serving 2 g. The front of the bottle says 200 mg. So I must have taken 2 g. not 200 mg. That would seem like a high dose don't ya think? What a confusing label.
Thanks for mentioning it here Minai .... really appreciate the thought. I was just reading about cholestryamine and now I don't know if I do want to experiment with it. Seems to have a lot of effects that raise red flags in my mind. Sheesh. Maybe I should just stick to charcoal and glucose but increase them. At least they are fairly harmless.
Time to go sleep on it. Thanks again. 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
MM,hope your p...ing
MM,
hope your p...ing returns to normal soon. I only take a heaping tsp of yaeyama in my already green juice in the AM. Today, I missed it & I am having alot of shooting pain!
Thanks for the reminder!!! Got to take my yaeyama!!
God Bless!
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 daysHey Ruthless1 ... good to
Hey Ruthless1 ... good to hear from you. Been wondering about you. Was going to send a PM to say "hey".
Thanks ... my bladder has calmed down to a hush now. I have not resumed the chlorella yet. Increased the glucose & today will increase Emergen-C.
I have sorta switched gears. I decided to try some Boswellia. My fingers & wrists too stiff & painful and the burning pain in my vessels, especially my legs & arms has gotten very bad. Feels like an "internal sunburn".
I woke up several times last night feeling like I was on fire inside my skin tissues and veins. I had remembered when years ago I took Boswellia it relieved this for me so purchased some recently hoping it will help again. I read about it all morning and could not see any contraindicates.
Tomorrow plan on having blood tests done so that will be interesting to find out the results in a couple of weeks.
I also have bronchial/lung irritation with productive cough and I read the Boswellia can help with it as well. Loosen the mucus, etc. Yay!
I need to get some work done now but hope to read your blog today. Am wondering how you are faring? Take care. 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