Cpnhelp.org

Well, there you go another vitamin comes to the fore. One day our doctors will catch on. Thanks Jim I'll look ino it.

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse. Zoo keeper for Ella, RRMS, At worse EDSS 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Hummm, ok, so who is going to be the guinea pig?? I cant right now. I'm slowly increasing my NAC to 5000mg. I'm congested for past 3 weeks but our weather here has been crazy, 30 to 40 degrees variance in a day or so. But once I'm on NAC 5000mg and no more congestion, either due to weather or NAC, I sure will.

I cant tolerate more than 1000mg of vit D a day without going into severe depression. It will be interesting to see what kind of die off this will produce.

Also, do you think that this might eventually replace one of the antibiotics in our protocol (like NAC replaced Amoxicillin)? of course, opinions will be based upon speculation only.

Mphs, TN. CFS, hypoT (Hashi), weak adrenals, 37 w/hormones of 80 yo. right arm neuropathy. + for cpn, myco, EBV, CMV. on NAC 3600mg, doxy 100-2xday, azith 250 m/w/f/sun, estriol, progesterone, synthroid, and pulsing w/flagyl.

A few minutes ago I would have to have admited defeat at finding tocotienols on their own, they came together with tocopherols in all the sites I visited, (about 6) but I found this at iherb.com. The secret is to google for Annatto tocotrienols.

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse. Zoo keeper for Ella, RRMS, At worse EDSS 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

I started getting this version of CoQ10 from Vitacost: http://www.vitacost.com/products/ToCoQ10.cfm

TocoQ10™ utilizes only the more effective 100% Japanese pharmaceutical grade natural trans-form CoQ10

NSI®'s ToCoQ10™ formula also contains a unique tocotrienol complex, Tocomin® SupraBio™, derived from the fruit oil of palm trees.

• Coenzyme Q10 (CoQ10), tocotrienols and tocopherols (potent forms of vitamin E) promote healthy heart function, provide powerful antioxidant protection and support the immune system in its daily defense of the body.

• NSI® ToCoQ10™ contains supremely high-quality forms of both CoQ10 and tocotrienols. Our CoQ10 is 100% natural, produced using a patented method that results in a CoQ10 identical to the body's own.

• Contains rice bran oil, which provides additional cholesterol health benefits and is rich in antioxidants (with one to two percent gamma-oryzanol and tocotrienols)

So perhaps if it wasn't for the fact that I had finished the protocol, I could be the guinea pig................Sarah

An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still slowly improving and no exacerbation since starting. EDSS was 7, now 2, less on a good day.

 I have some on order, so I'll be a guinea pig soon. It is critical that the form be high delta-tocotrienol, and that it not have any tocopherol (regular E). Supposedly the best form of this is derived from annatto as it has lot's of toco and what little E is in it can be distilled out. One brand: Delta Fraction Tocotrienols by Nutricology. I think Allergy Research also has a brand.

iHerb was out of stock so I ordered it elsewhere, but won't post the place until I find out how their service is, i.e. I had one order from a company and no response to my order, have tried another but haven't yet received the order. We'll see.

Careful not to get "tocotrienol complex" which often means it's a combo of tocotrienol and tocopherol. Sarah, you might want to find out if your supplement has the tocopherol mixed in, as the term "complex" is ambiguous-- sometimes means the combo of tocotrienols and sometimes the combo with tocopherols. 

CAP for Cpn 11/04. Dx: 25yrs CFS & FMS. Protocol: 200mg Doxy, 500mg MWF Azith, Tini 1000mg/day pulses; Vit D1000 units, Cytotec 100mg, Plaquenil 100mg, Magnascent Iodine 12 drps/day, T4 & T3

Great stuff, Jim. In doing some research for my brother a little while ago, I ran across this article about Tocotrienols' anti-angiogenic properties:

Tocotrienols show promise against cancer growth

"Japanese researchers, led by Kiyotaka Nakagawa from Tohoku University, looked at the ability of tocotrienol to prevent angiogenesis, associated with tumour growth, rheumatoid arthritis, and diabetic retinopathy.

"Our findings suggest that tocotrienol has potential as a therapeutic dietary supplement for preventing angiogenic disorders, and therefore future clinical study will be required to evaluate the efficacy and safety of tocotrienol," wrote the researchers in the Journal of Nutrition."

Here's the actual study:

In Vivo Angiogenesis Is Suppressed by Unsaturated Vitamin E, Tocotrienol

This study made me wonder how well tocotrienol might help fight the runaway angiogenesis that appears to be involved in rosacea as well, so I did some digging to find a few topicals that are being formulated with it, some even suggested to help with "spider veins". Interesting. I've included a few of these products here for anyone interested:

Interesting study on Tocotrienols as angiogenesis inhibitors

I've since run across the above study on Dr Wheldon's site, where it's been for some time with some additional information, just waiting for me to read again and finally comprehend. The good doctors are always AT LEAST 2 steps ahead of us...

I haven't tried Tocotrienols yet either since I've got my hands full with just the D3 at the moment, but I'm very interested. Please keep us posted on your progress with it. Most of all, best of luck!

On Combined Antibiotic Protocol for Cpn in Rosacea 01/06 - 07/07, On Vit D3 + NAC since 07/07 and daily FIR Sauna since 08/07

Thanks for bringing this to our attention,Jim. When I last spoke with Dr. Powell he also suggested getting some tocotrienol E. As with your experience with Dr. Stratton, I have to ask him to slow down and spell things out for me as I had never heard of this form.
I bought some Source Naturals Tocotrienol and have been taking 1 cap a day it for about a month. It says on the label:

Vitamin E as D-alpha tocopherol 100mg
Total Tocotrienols 50mg
yielding gamma-Tocotrienols 24mg

As the articles say, it is best to not take tocopherol with tocotrienol. I am wondering about the statement on the label of the supplement I bought that says combining the two enhances E's antioxidant properties.

So it looks like I will be ordering another brand.

Thank you again for setting out this information and clarifying it for us. Now I understand more about the benefits of this form of E.

Raven
CAP since 8-05 for Cpn and Mycoplasma P. for MS and or CFS

Raven-

I'm sure you can find more, but this link says:

As mentioned previously, tocopherols do not have tocotrienols’ cholesterol-lowering ability. In fact, alpha-tocopherol has been shown to attenuate or interfere with gamma- and delta-tocotrienols’ cholesterol-lowering action.3 Therefore, it is important to find a supplement with a high tocotrienols content (especially gamma- and delta-tocotrienol) and a low tocopherols content. “Rice tocotrienols” contain about 50 percent tocotrienols and 50 percent tocopherols. “Palm tocotrienols” contain approximately 75 percent tocotrienols and 25 percent tocopherols. However, a little known tropical-rainforest-derived plant called Annatto ranks highest in tocotrienol content. Annatto contains 100 percent tocotrienols, and is virtually tocopherol-free. A special patented, solvent-free extraction of Annatto seeds produces the two most effective tocotrienol isomers: 90 percent delta-tocotrienol and 10 percent gamma-tocotrienol. Annatto is the only source of tocotrienols that contains 100 percent desmethyl tocotrienols and virtually no tocopherols.

Annatto-derived tocotrienols should be consumed 6 or more hours away from a multivitamin or other vitamin E supplement, due to the tocotrienol-inhibiting ability of tocopherols (the form used in most multivitamins and vitamin E supplements).

 They refer to this study:

We now report that including alpha-tocopherol in tocol blends containing adequate gamma-tocotrienol to suppress 3-hydroxy-3-methylglutaryl coenzyme A reductase activity results in an attenuation of the tocotrienol action (P less than 0.001)

CAP for Cpn 11/04. Dx: 25yrs CFS & FMS. Protocol: 200mg Doxy, 500mg MWF Azith, Tini 1000mg/day pulses; Vit D1000 units, Cytotec 100mg, Plaquenil 100mg, Magnascent Iodine 12 drps/day, T4 & T3

 Some other sources (pricey, but I haven't compared dosages to the Nutricology):

http://www.vrp.com/ProductPage.aspx?ProdID=3090

http://www.healthyheartht.info/deltagold.htm  

CAP for Cpn 11/04. Dx: 25yrs CFS & FMS. Protocol: 200mg Doxy, 500mg MWF Azith, Tini 1000mg/day pulses; Vit D1000 units, Cytotec 100mg, Plaquenil 100mg, Magnascent Iodine 12 drps/day, T4 & T3

hmmm, my NOW foods E is only 80 mg of delta, gamma &? mixed so I will look for another brand when this is done!

Thanks very much for the information peeps.

CFIDS/ME 25yrs, FMS, IBS, EBV, Cpn, (insomnia - melatonin, GABA, tarazadone, triazolam, novocyclopine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NAC 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 1-3-08 5th pulse 1 X 375 mg 4day

 Ruth- and the Now Foods is mixed with regular Vit E (tocopherols) which counters the cholesterol lowering effect of tocotrienol. Unknown whether it also counters the anti-chlamydial nature of it, but the research was done using pure high-delta fraction tocotrienol, so that's what I would use if you try it.

CAP for Cpn 11/04. Dx: 25yrs CFS & FMS. Protocol: 200mg Doxy, 500mg MWF Azith, Tini 1000mg/day pulses; Vit D1000 units, Cytotec 100mg, Plaquenil 100mg, Magnascent Iodine 12 drps/day, T4 & T3

Well this explains why 5 years ago I went on a super food which main claim was to have tocotrienols and I felt TERRIBLE. My blood sugar dropped, weakness etc. Now that I know what I know it was a die off. I always wondered why I did not feel well on it.

Thanks for the info.

kc
dx ms 1996. started cap 10/05. Started with tini pulses switched to flagyl pulses. Now almost on continous 500mg flagyl but do need breaks. On doxy 200mg/day azith 250 mwf and NAC 700mg. ldn 2.0mg.

 kc- I'm not so sure your die off was from toco's. In a communication with the chief scientist on that patent, Dr. Stuart, she did not think that Toco's would cause such reactions since they inhibit entry and infection predominantly. The apoptotic effect appears mostly in cancer cells, and did not show up in Chlamydia in vitro.

It could be that other ingrediants in your "superfood" had an affect: anti-candida die-off; increased porphyrins from effects on the liver; or some other anti-Cpn effect of the ingredients. There is another patent I found which lists plant phenolics and herbal extracts that were found to have antichlamydial effect, especially in combination. A green superfood could have sufficient quantities of these to kick your butt!

We don't yet have any data on people with Cpn load taking tocotrienols ie. starting a high delta formulation and having distinct die-off reactions. Awaiting the reports-- me first! 

CAP for Cpn 11/04. Dx: 25yrs CFS & FMS. Protocol: 200mg Doxy, 500mg MWF Azith, Tini 1000mg/day pulses; Vit D1000 units, Cytotec 100mg, Plaquenil 100mg, Magnascent Iodine 12 drps/day, T4 & T3

Jim and all,  Another lab rat here.  As a matter of coincidence, this weekend I tried to order Allergy Research/Nutricology Delta-Fraction from iherb.com along with my quarterly supplement order, but they were out of stock.  So, I ordered it from another internet supplement vendor and should receive it this week.  On December 11, my total cholesterol was 311; triglycerides were 159.  On December 28, total cholesterol was 261, and triglycerides were 213.  By the time the samples were collected, I had already been using a good brand of phosphatidyl choline for several weeks (but abusing myself with holiday and comfort food).  The only good news on the lipid front was that the HDL was higher than on previous tests.  Near the end of this month, I will see an endocrinologist (for other reasons) who will probably order new lab work.  It will be interesting to see what the lipid levels are after using the Delta-Fraction for almost 3 weeks.

Incidentally, I wrapped-up the full-time CAP on January 25 per my doctor's direction.  I think the dates of blood collection were high-inflammation times related to die-off.

Joyce (self)~generally falling apart with high blood lipids, adult onset diabetes, arthritis, other Cpn and Mpn related conditions, recent trend from hyperostosis to osteoporosis---CAP 5/07-1/08.

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

How long did the continuous CAP go on for Joyce? Has it made a difference to your recovery?

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse. Zoo keeper for Ella, RRMS, At worse EDSS 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Jim, what was the plant phenolics and herbal extracts found to have antichlamydial effects? I am continuously flagylating myself since last April. I want something to kick me harder.

Combined Antibiotic Protocol minocycline, azithromycin, metronidazole for muscle pain, insomnia, interstitial cystitis, sinus, disphonia, dry eyes, stiff neck, veins, thyroid, TMJ.

Jim

I was on Risotriene which is made from brown rice. There is no green food in it. I definately did have die off from it, I realize that we don't want people to have a pre conceived notion that they will experience die off but everyone is different. This health attempt was WAY BEFORE I did any CAP.

Let's hope no one does experience die off from it.

x ms 1996. started cap 10/05. Started with tini pulses switched to flagyl pulses. Now almost on continous 500mg flagyl but do need breaks. On doxy 200mg/day azith 250 mwf and NAC 700mg. ldn 2.0mg.

Dr. Stratton is of the opinion that the toco's are probably best used after completing a CAP as a maintenance and preventative. One reason is their expense compared to other supplements. He mentioned that someone like Sarah Longlands, having completed treatment, would benefit from adding tocotrienol as a maintenance supplement along with NAC. The other reason he mentioned is that their main effect appears to be preventing EB's from invading. This does nothing for Cryptic forms, which he believes can still generate RB's in infected cells, albeit at a slower rate. You still have to get in there and kill it.

But he thought toco's could also be a useful CAP start-up for some who are especially sensitive to the die-off when I mentioned this idea I had had. The start up might be: NAC (until tolerate one per day) then add one tocotrienol a day, continue from there. 

Of course, the effects on cholesterol alone would make it a worthwhile supplement for many. I'm convinced, as is Dr. Stratton, that cholesterol is ramped up in Cpn infection, either by the bacteria itself upregulating this in the body, or as a defensive response by the body, or perhaps to respond to the organism's hijacking of cholesterol for it's own uses. 

KC- the amount of tocotrienals in Risotriene is pretty small:

Tocotrienols

1.20

mg

http://healthy-living.org/html/risotriene_analysis.html

There is so much other stuff in it, including plant phenols and sterols, that it's impossible to know what caused your reaction. On the other hand, given your report, it may be a useful supplement that enhances Cpn kill for whatever reason (see patent info below).

 ----------------------------------------------------------------------------------------------------------------------

try http://www.freepatentsonline.com for a read. 

United States Patent Application
20040058983
Vuorela, Heikki ;   et al.
March 25, 2004

Plant-derived and synthetic phenolic compounds and plant extracts, effective in the treatment and prevention of chlamydial infections

Abstract
The invention relates to natural and synthetic compounds, plant extracts and compositions containing them and mixtures of these in the treatment and/or prevention of a chlamydial infection. Medicinal preparations, food additive compositions and functional foodstuffs can be prepared from the plant-derived phenolic compounds and synthetic compounds and plant extracts.

CAP for Cpn 11/04. Dx: 25yrs CFS & FMS. Protocol: 200mg Doxy, 500mg MWF Azith, Tini 1000mg/day pulses; Vit D1000 units, Cytotec 100mg, Plaquenil 100mg, Magnascent Iodine 12 drps/day, T4 & T3

Is this stuff giving anyone else gas and diarrhea, or am I the lucky one? 

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

 I guess you are just lucky! No problem in this way for me. Curious that you are getting this reaction.

CAP for Cpn 11/04. Dx: 25yrs CFS & FMS. Protocol: 200mg Doxy, 500mg MWF Azith, Tini 1000mg/day pulses; Vit D1000 units, INH 150mg, Magnascent Iodine 20 drps/day, T4 & T3

Delta Tocotrienol E is now back in stock at iHerb and significantly less than the order I first placed with another online vendor at $14.97.Same brand. Happy supplement hunting--better than those weird colored eggs and alien marshmallow chicks!

http://tinyurl.com/yvhuq6

Raven

Thanks, I will check IHerb as well!

I love the Cadbury mini eggs with that lovely candy coating & now, even in dark chocolate!

Happy Easter everyone!

CFIDS/ME 25yrs, FMS, IBS, EBV, Cpn, (insomnia - melatonin, GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NAC 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 8th Pulse 2 X 375 mg 3day,375 2 d

 I've had good service and low price from www.outletnutrition.com including good pricing on Now Calcium Pyruvate. Just ordered a bunch as the latter was on sale!

CAP for Cpn 11/04. Dx: 25yrs CFS & FMS. Protocol: 200mg Doxy, 500mg MWF Azith, Tini 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

Last week, or perhaps the week before, I posted something that mentioned that I was having trouble finding a good source of Tocotrienols.  Jim K replied with a link to a site that has them from Nutricology.

So, I went out looking for all sites that carry Nutricology tocotrienols and what did I find but a link to this discussion albeit, it was about 2/3rds of the way down the page.  However, it was there.

Now, my reasons for looking for the link is I'm about 28 days away from needing to refill my initial 2 month supply of tocotrienols, which I got from Vitamin Research Products.  Jim's source from Nutricology was much lower priced and I'll go that way in the future.

As mentioned, I've been on Annatto tocotrienols for over a month.  I do notice a reaction from them, generally about 15 minutes after taking one pill of 100mg.  It's what would be described as mild in comparison to some reactions that people here experience, but it is a reaction.  Basically, it makes my limbs heavier and movement more lethargic, your basic herx type reaction for someone with MS, or so I understand.

I also usually take the tocotrienols within 45 - 60 minutes of taking a dose of Rifampin, NAC, and INH. 

all my best

John

RRMS/EDSS was 4.5, was 4.???, now 5 on Wheldon Protocol (nac, doxycycline, azithromycin, metronidazole) since 04/12/2006. Added Rifampin 2x150mg/daily on 08/19/2007. Added INH 300mg/daily on 03/17/2008.

Annatto tocotrienols are back in stock at Iherb.com too.

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse. Zoo keeper for Ella, RRMS, At worse EDSS 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006