1st two months benchmark:
I began with Vitamin B12 injections. Starting with 3000mcg injections a day for 5 days to get my load up, my energy levels stopped crashing after about the first week. From that point I went to 1000mcg/day for the next 5-6 weeks. Now I'm starting a routine of 1000mcg/week. If my energy levels dip again, I experience too much stress, or I pull really long hours at work (my hours have been brutal since Jan.), I will give myself a booster shot.
I wasn't nervous about giving myself a shot, needles don't bother me, but I worried about turning into a pin cushion with all the injections. I use the short fine sticks and discovered an area at the side of my upper hip which is numb on both sides. I don't even feel the needle. I inject very slowly because it's a bit of stuff to be pushing in. One day I tried it further back and down to the top of the buttock and as I pulled the needle out the blood squirted out behind it. The speed the blood came out and the amount was a bit shocking -- took a bit to get it to stop. So I avoid that area now...
After about a month I added the NACi and D3. This is when I officially started preCAP preparation. I bought 1000mg D3 tabs that could be melted under the tongue and had two a NAC bottle. The stuff stunk and I suspected it was 'off'. But I did a bit more reading and learned that the sulfur smell is expected. I didn't recognize that stink as sulfur but I was reassured that an 'aroma' was expected. It becomes much less noticable the longer I take it.
I started with 600mg NAC at breakfast. I have a breakfast shake of rice protein, field berries, caprylic acid, bento, essential oils, etc. which gives me a foundation for my supplementsi. With NAC I experience a sensation of chest congestion and general malaise. I also have a fair bit of upper abdominal/flank/back pain which may be from the NAC or the D3. Initially I had good days with some energy and days where I had to stay in bed. I had one great weekend of sustained energy only to fall really ill the third day. Shortly after beginning, at the end of those 2 good days and getting a small bit of sun for the first time in years, I vomitted breakfast up. This is a very strong reaction for me, my body will hold everything, I just cannot/do not throw up. Ugh. Anyway I was in bed for a couple of days. I started the NAC again when I was back on my feet, and upped the dose to 600mg 2x/day, within a week I went to 1200mg 2x/day and have sustained that level of 2400mg/day.
After a month on NAC with D3 I have increased my D3 to 5000mg/day and am more or less always feeling unwell, my energy levels are low but generally steady, I experience deep muscle pain and ache all over, my mid-drift has terrible pain at times and my chest feels like it's on the verge of a cold but nothing comes of it. My husband has been giving me deep tissue massage with the hope of giving some relief but it doesn't help. I can feel all the hard lymph nodes down the inside of my arms and chest area. Yesterday I put on some of those long lasting heat pads that you can stick on or wrap; they are activated by air and last a good 8 hours. I stuck them on my shoulders, hips and wrapped one around my mid- and lower-back. The warmth was steady and mild, and for a good while yesterday my body was soothed. But when I took them off I had blisters, big yellow baggy blisters where the heating pellets touched my skin -- wearing clothes today is an impossibility. These had never been an issue of irritation before. I'm so glad to work from home, it'll be comfy PJs only for the next few days.
I've got another 2-4 weeks til I begin my ABXi. Taking this amount of time will work well for me to gauge the level of response my body exhibits. I took Doxyi for a couple of months a couple of years back for Rosaceai and I recall being pleased to be able to tolerate it well. With my presently established routine of NAC and D3, and that fairly recent comparable, I think I will be able to discern what affect the Doxy gives. I'm not sure if everything I've experienced so far is due to any supplement though, the rollercoaster is pretty much standard operating procedure for this body lately.
That's it for now. In summary, I began with B12 and built up my levels, then added NAC and D3. I discovered that sun exposure is bad for me right now and that my skin is hyper responsive. I have to take it easy on the good days to stave off the bad days. I feel a bit worse than when I started, and while that could be attributed to the time of year though I pretty much suspect it is the supplementsi.
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Corinna. May 2008. NACx2400mg, D3x5000mg, B12x1000mcg. :: Allergies, Generalized Inflammationi/Eczema, Chronic Sinusitis, BiLat/Trigeminal Neuralgia, FM, CF, Arthritis, Rosaceai.
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Corinna | GFAi. Wheldon Protocol: 4 – 8/08. Stepping back to recoup. Prednisone, Tramadol, Probiotics.
Well done Corinna, Worsening
Well done Corinna,
Worsening before getting better is what many of us do here. It is normal & I am happy to say, it appears you are doing some beast slaying. Now you should be routinely taking your moppers to help eliminate toxin out of your body.
Perhaps the heat pad irritation sores are from the CPni. You are off to a good start.
Expect the unexpected & everything will run smoothly, in a manner of speaking of course.
CFIDSi/ME 32 yrs, FMSi,
IBSi, EBVi, CMV, Cpn, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#10 1000 mg 3 days & 750mg 2 days, 5-17-8___________________________________________________________
CFIDSi/ME 32 yrs, FMSi,
IBSi, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#13 1240 mg X 3 days 8-7-08Ruthless1, LOL! I feel like
Ruthless1, LOL! I feel like crap... hooray! It is comforting to know that feeling worse is a good thing. I did wonder if the blisters were the secondary porphyriai... now I'm going to look for additional moppers! ...love the "moppers" moniker -- très après-po
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Corinna. May 2008. NACx2400mg, D3x5000mg, B12x1000mcg. :: Allergies, Generalized Inflammationi/Eczema, Chronic Sinusitis, BiLat/Trigeminal Neuralgia, FM, CF, Arthritis, Rosaceai.
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Corinna | GFAi. Wheldon Protocol: 4 – 8/08. Stepping back to recoup. Prednisone, Tramadol, Probiotics.
Hi Corinna, Glad to hear
Hi Corinna,
Glad to hear you've still got your sense of humor!
Definitely mind the secondary porphyriai, particularly when you add doxyi to the mix. Between it, the NACi and the Vit D3, you're liable to get a pretty negative reaction. Just take it slow and steady, and be sure to try all possible anti-porphyria measures to see what works best for you...
Hang in there, and keep these great posts coming!
On Combined Antibiotic Protocol for Cpni in Rosaceai 01/06 - 07/07, On Vit D3 + NAC since 07/07 and daily FIRi Sauna since 08/07
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On Combined Antibiotic Protocol for Cpni in Rosaceai 01/06 - 07/07, On Vit D3 + NACi since 07/07 and daily FIRi Sauna since 08/07
Thanks Red. I'm still
Thanks Red.
I'm still trying to sort what are symptoms of secondary porphyriai and what is just me being a lemon.
I'm not too surprised that my skin is reacting -- I understood that rashes could occur, and in my case likely would, but blisters? I was curious about how they could manifest when I read the list -- I actually marvel that this is all occuring. Very interesting! Now I've got new smaller blisters this afternoon, on my wrist and I hadn't worn my watch for a couple of days... it's become too heavy but an area that normally has some irritation has puffed up and filled with fluid. I'm popping, sterilizing and lightly bandaging them to avoid any tearing and mess. The tissue is so fragile on them.
On the bright, shiney and red side, my face is aglow with the sheen of rosaceai. My entire face and neck are fully red, hot and swollen, my chin is almost blue red and has developed bumps. I'm a little freaked about that part... knocking the rosaceai back was a big deal and I work so hard at keeping it at bay. I sure hope this passes. I think I can handle anything but the rosacea.
Thank you again for your support and encouragement. I wouldn't be here if it weren't for you. Hmmm... going to pass on making a wise-crack there.
Big hugs,
Corinna
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May 2008. NACx2400mg, D3x5000mg, B12x1000mcg. :: Allergies, Generalized Inflammationi/Eczema, Chronic Sinusitis, BiLat/Trigeminal Neuralgia, FM, CF, Arthritis, Rosacea.
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Corinna | GFAi. Wheldon Protocol: 4 – 8/08. Stepping back to recoup. Prednisone, Tramadol, Probiotics.
Hi Corinna, Gosh, are the
Hi Corinna,
Gosh, are the blisters from sun exposure?
I understand the wondering about what is secondary porphyriai (and the elevated cytokinesi, etc of die-off). I was there at first too. Now however, I am quite sure of it, mostly because I've knocked back my symptoms to a point where I only get them on occasions (and I can generally trace to the source).
Don't be afraid to drop back a bit on the Vit D3 if your symptoms get too bad. You've ramped up awfully quickly. I know it's hard to believe, but I swear higher doses of Vit D3 pack the punch of CAPi during a flagyli pulse. If 5000 is too much Vit D3, drop back to 3000 or so for a month or two unti symptoms die down a bit. Remember, you're not in a race...
Meanwhile, take care of yourself. I hope you feel better soon!
On Combined Antibiotic Protocol for Cpni in Rosaceai 01/06 - 07/07, On Vit D3 + NACi since 07/07 and daily FIR Sauna since 08/07
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On Combined Antibiotic Protocol for Cpni in Rosaceai 01/06 - 07/07, On Vit D3 + NACi since 07/07 and daily FIRi Sauna since 08/07
Thanks Red :o) I feel much
Thanks Red :o)
I feel much better. I've started to add regular Vitamin C powder drinks and WOW -- I am a very happy camper.
I don't think the blisters are from the sun, per se, just from anything that causes enough insult to my skin which the sun very much does. My skin is very fragileright now, even carrying light shopping bags leave me with lines of broken vessels on my hands, wrists and arms.
My feeling is that the increased rosaceai symptoms are as a result of the diet change, so I have accepted that as par for course with this therapy and am not going to sweat it. I feel quite confident that the issue will subside with the rest of my symptoms.
I hope you, and your family, are doing well.
Warm regards,
Corinna
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GFAi. NACx2400mg, D3x5000mg, B12x1000mcg.
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Corinna | GFAi. Wheldon Protocol: 4 – 8/08. Stepping back to recoup. Prednisone, Tramadol, Probiotics.
That's great, Corinna!
That's great, Corinna! I'm glad to hear Vit C is working for you!
Hang in there. That rosaceai will clear up soon, I'm sure...
On Combined Antibiotic Protocol for Cpni in Rosaceai 01/06 - 07/07, On Vit D3 + NACi since 07/07 and daily FIRi Sauna since 08/07
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On Combined Antibiotic Protocol for Cpni in Rosaceai 01/06 - 07/07, On Vit D3 + NACi since 07/07 and daily FIRi Sauna since 08/07