12 Jan 2009 11:39 am
I know there are people out there, many under one of the treating doctor's care, who are currently on an alternative treatment of high dose Vitamin D3 + NAC (+ other agents) and who do not regularly post on CpnHelp. I'm hoping that they might post their treatment experiences in this new forum.
12 Jan 2009 11:39 am
12 Jan 2009 09:23 pm
eveningdream- can you post or put in your signature the doses of D3 and of NAC you have been using, and any other supplements and such you take as well.? Thanks.
13 Jan 2009 10:34 am
When i get my lab requesitions and have my results to add to my existing log of Vit D3 25(OH) blood levels I will post the progression once again and the current result of my 2+ month increase to VitD3 10,000IU daily dosage amount. May be a few weeks for the turn around time. I will post again and bump this thread up with my results. Louise
14 Jan 2009 12:02 am
Thanks for posting, Eveningdream! Glad to hear this is working for you!
Treatment for Rosacea
23 Jan 2009 03:22 am
Vit D, lab results from blood draw after a period of 3 months of D3 taken at 10,000IU/day, very minimal sun exposure at peak of winter, snow belt locality, 68ng/mL. Louise
22 Jan 2009 04:16 pm
I recently upped my dosage to 10,000 iu a day (from 8,000) after finding out I have a mutation in the VDR FOK (vitamin D receptor). I have taken this much before but was noticing that the bumps in my mouth (tori)were growing. Then I backed off this amount. My doctor suggested dropping the calcium supplement I was taking and just get calcium from diet alone. This worked because this time I have no growth in the tori.
The days I go out in the sun, I drop the D completely if I get at least 30 minutes in shorts and a tank top between 11 and 1. Even in Jan. the Calif sun can be quite intense if we get nice weather.
My big question about D (for me) is how much does this VDR FOK mutation influence the absorbtion or utilization of D? I'm sure there are many other people who have mutations with their D receptors.
What has been the effect of high dose D? I have noticed significant die off from summer sun exposure earlier in the treatment. At three years plus, I get a slight effect from this new level. However, I think I just dodged a full blown shingles infection due to the high D plus all the other things I was taking. I was very lucky!!
Raven
Feeling 98% well-going for 100. Very low test for Cpn. CAP since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NAC,BHRT, MethyB12 FIR Sauna. 1-18-11 begin new treatment plan with naturopath
22 Jan 2009 10:17 pm
Glad to hear you've actually dodged the shingles outbreak, Raven!
Treatment for Rosacea
What is NAC? and how much to take?
Doug
29 Jul 2010 01:11 pm
Hi Doug and welcome to our world! Most of us - and most Americans have or had - extremely low to low Vit D levels. This certainly included me for years when I depleted my D level with liberal sunscreen, long-sleeved shirts, and wide-brimmed hats. I developed MS and cancer. Every day I take 10,000 (10,000) units of Vit D and most of the other supplements suggested here. My level is usually in the mid 80s, but recently had dropped to the mid 60s. Up until last Monday my daily intake was 8,000.Please read the Getting Started at the top of the page and anything else here - and ask questions if you don't find the answer.Rica
3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan In for the duration.&am
29 Jul 2010 03:21 pm
I'd been taking 10,000 iu of D3 per day for the past year or more and I recently tested at 42 for vitamin D levels. Now, I'm up to 15,000iu per day, so will report in after I'm retested in a month or so. I definitely had facial flushing when I upped the dosage by 5000iu/day and one day of totally depleted energy, but all that has passed.
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
31 Dec 2010 11:04 pm
Does anyone know how much Vit D and NAC eveningdream is taking?
Doug
1 Jan 2011 12:05 am
Hi Doug,Eveningdream posted in late 2008 the levels she was taking here:http://cpnhelp.org/good_resultsknock_wood
Treatment for Rosacea
Thanks! From her one post it sounded l ike she was taking a very high dose of Vit D.
Doug
I don't believe 3,000 i.u. of Vit D is considered a high dose...... JeanneRoz
JeanneRoz ~ DX'd w/ CPN 4/2007; 6/07 -"officially" dx'd w/CFIDS/FM; also: HHV6, EBV, IBS-C, 100 Doxy:BID; 500 mg Biaxin BID; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni
I dont either.. that is why i was surprised to read 3000 IU
Doug
11 Jan 2011 10:56 am
In 2008, 3000 iu was considered a high dose of Vitamin D - at least it was in the health food industry.
Started CAP for Cpn on 11/14/10 - Per my doctor, paused Abx 5/18/13 - NAC, B-complex, Vit D3 (50,000/week), Niacin (100 mg/BID). Started Buhner protocal (2nd edition) on 8/30/16. Currently using a blend of Buhner's Cpn and Mycoplasma protocols
Hi! i just wanted to say
Hi! i just wanted to say that I have had tremendous and life altering improvement using only vitD3 and NAC.
I am not in the medical field and can hardly understand half of the things that I read on this forum, so I dont completely understand why it is working, and whether or not it is eliminating it or just holding it at bay...but when it comes to rosacea, seeing is believing and my rosacea is gone!!!
My rosacea was not just a red flush, it was alot of pustuals, and scaling of skin which I think might have been a secondary yeast overgrowth, red broken veins showing, itchy, lumpy texture, and overall redness and heat to the skin. It progressed over 5 years and got to the point that there was no makeup that could make me look normal. I had to change jobs so that I was not in the public eye. I would opt not to go out on the weekends because my house was the only place I felt comfortable. Hidden.
My skin is completely healed now and I dont wear makep at all, except for special occasions. Its normal looking and cool to the touch!!! I am still on the vit.D3 and NAC and that is where I AM STAYING!!!
If I told people outside of this forum the high dosages I am taking I think I would scare them...and I guess I was scared too at first , but as soon as I saw physical improvement of my face, I became alot braver.
Now I think that our ancestors must have gotten alot more sun exposure than we do, as modern people we spend most of our day indoors, but THAT is actually kind of unnatural. I think sunlight is maybe sort of a natural medicine that boosts our immune systems, I mean we evolved WITH the sun. I am not saying that you should bake on the beach all day, but alot of people spend 365 days of the year indoors, give or take 2 weeks vaccation and a few weekends at the golf course, and thats gonna be significantly less vitD3 than what our ancestors got.
rosaceai : to