A call for those on High Dose Vitamin D3 to post their experiences in the new High Dose Vit D Forum

 

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 + NACi (+ other agents) and who do not regularly post on CpnHelp.     I'm hoping that they might post their treatment experiences in this new forum.   

It can be found by clicking the Forums page on the sidebar tab on the CpnHelp Home Page or scrolling down to the  "High Dose Vitamin D" section under  "Related Discussions" section by selecting the following link:

http://www.cpnhelp.org/forum <

I believe spreading the word about this alternative therapy is very important as it could help so many people that otherwise may not be able to find prescribing doctors or those who may not be able to handle the reactions of traditional CAPi.   I also believe strongly that it may be found to be better able to treat those who have other viral, bacterial or fungal infectionsi in addition to Cpn...

Welcome in advance to anyone who posts their experiences while on this alternative therapy...

Hi! i just wanted to say that I have had tremendous and life altering improvement using only vitD3 and NACi.

 

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 rosaceai, seeing is believing and my rosacea">i 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 immunei 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<i< : to

eveningdream- can you post or put in your signature the doses of D3 and of NACi you have been using, and any other supplementsi and such you take as well.? Thanks.

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

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
  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <
Thanks for posting, Eveningdream!   Glad to hear this is working for you!

Treatment for Rosaceai<

  • CAPi:  01/06-07/07
  • High-Dose Vit D3, NACi:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

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

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

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 Di 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 Cpni. CAPi since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NACi,BHRT, MethyB12 FIRi Sauna. 1-18-11 begin new treatment plan with naturopath

Glad to hear you've actually dodged the shingles outbreak, Raven!

Treatment for Rosaceai<

  • CAPi:  01/06-07/07
  • High-Dose Vit D3, NACi:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-
What is NACi?  and how much to take?
Doug

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 MSi and cancer.  Every day I take 10,000 (10,000) units of Vit D and most of the other supplementsi 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 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

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 Di 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

Does anyone know how much Vit D and NACi eveningdream is taking?

Doug

Hi Doug,

Eveningdream posted in late 2008 the levels she was taking here:

http://cpnhelp.org/good_resultsknock_wood <

Treatment for Rosaceai<

  • CAPi:  01/06-07/07
  • High-Dose Vit D3, NACi:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-
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 ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi<; 500 mg Biaxin BIDi; 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
In 2008, 3000 iu was considered a high dose of Vitamin Di - at least it was in the health food industry.

Started CAPi for Cpni on 11/14/10 - Per my doctor, paused Abxi 5/18/13 - NACi, T3, St Johns Wort, B-complex, Vit C, Vit D3 (8,000/day), Vit E, Astragalus, Chlorella, Chelation with Alpha Lipoic Acid">i. Started Buhner protocal (2nd edition) on 8/30/16.

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