Mark's update after 24 months on the CAP

Guys I thought I would post this –it might help some out there. I live in Australia. I have had CFSi for around 20 years & have always been able to hold down a job (at times coming home early for a nap). I have still been able to get out & exercise (I love cycling & skiing!). I live in Australia. Often it takes me a while to recharge after these activities. You could say that I was running at about 70% of where a healthy person would be. My main symptoms are fatigue & brain fog. After visiting 18 different Dr’s finally one diagnosed me with CPNi & I ended up seeing a Dr who is happy to treat this in Australia. He started me on the tinidazole, roxythromycin & minocycline. After not herxing on any of these he switched me to a longer pulse using the metronidazolei. After around 1 year I got extreme muscle weakness (couldn’t even ride 1 km on my bike) & the Dr took me off the minocycline. During this time 1 significant thing that happened was that I bought some curcumin (tetra hydra curcumin oil). I took 1 squirt per day for 2 months & nothing happened. Then 1 day I had a sore back & asked my wife for a massage & I grabbed the curcumin to use as massage oil. She put 6 squirts on my back & then 1 day later I was stuck in bed for 3 days. Now I know what a herx is! Interestingly the curcumin is the only thing I ever herxed with. I built up the dose until I could tolerate 10 squirts with no reaction.

I found that when I tried to build the NACi up above 600 mg per day I ended up with sweat smelling like sulphur & other random stuff (NAC contains sulphur). I also can’t tolerate red wine with high sulphite levels in it – it makes me really tired for a few days. I suspect that my body just can’t process it properly. But I could be wrong, it may be that I still have a significant CPN load & can’t tolerate it for that reason.

About 18 months into the CAPi I started breaking nails at work etc. I am a guy who cuts his nails short! For some reason my nails had turned brittle. After going on the biotin this problem fixed itself after about 1 month. I thought that I would have to wait for the full nail to regrow but this wasn’t the case.

 

I continued with the other metro & roxy until I got to pulse 24 (24 months on the CAP). I just couldn’t complete it I was feeling so bad. It may be that I overdosed on a vitamin or my body was fed up with the abxi. I am still trying to figure this out. For the last 2 weeks on the CAP I put on ~ 2kg. There was no change in my diet – when my body isn’t happy my weight, cholesteroli & blood sugar all go up. This has happened before when I was on antidepressants.

 

My blood tests indicate that the CPN has died off (not all gone yet). Also the blood flow in my neck veins has improved. The CPN block the neck veins & have a party there. An ultrasonic measurement of the flow in the veins picks this up & seems like a great tracking tool to use. It is a slow improvement over 2 -5 years. It is worth saying that the veins on the opposite side of the neck to the blockage take up the slack & have higher than normal flow. I am now feeling somewhere between 60-70%. It varies on the day. I am trying to exercise –my leg strength is around half of what it was before I started the CAP!

My brain fog has only alleviated since I have come off the CAP.

 

The path forward:

I am continuing with all supplementsi & will use abxi 2 weeks every 2 months to keep a lid on the CPN. I will keep rotating through the scientifically proven non-prescription CPN killers. I haven’t yet tried leucine, isoleucine, resveratrol, quercitin, lysine. I have been using vitamin Di, E, curcumin & biotin already – they have all been documented as killing CPN in their own right.

 

If anyone has had any success with leucine, isoleucine, resveratrol, quercitin or lysine let me know!

I figure that the more ways I try to kill the CPN the better off I will be. Always useful to have a few good tools up ones sleeve J

 

As a side note a friend up the road has FM with significant pain & migraines. They got tested & have CPN as well. They are improving significantly on the CAP. So as a lot of you know CPN can cause all sorts of varying symptoms.

Many thanks for all who have helped with questions & support from the forum! I may not post much but certainly read it!!! Many thanks also to those people who are recovered but choose to spend valuable time helping the rest of us! 

All the best,

Mark Cool

Comments

buhner spice

Curcumin  is mentioned in the Buhner protocol for cpni 

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Doing Thibault protocol (NACi/minoi/roxi/tinii/nattokinase)...but considering morphing to Stratton protocol

Interestink!

Interestink!

Doctor in Australia

Hi Mark, I have just recently been diagnosed with CPNi and was wondering what state you live in and who yr doctor is. I am in Brisbane. Cheers Julie

Good Work

Hi Mark

You are on the right track

Thyme essential oil is also effectove against CPNi among other things you can use it topically

I am intersted in the curcumin oil

What brand did you use?

Are you still using it and are you still getting a herx?

If you are still using it how often and how much?

Thanks

DAILY:  NACi 2400MG , DHEAi sublingual , vit D3 , multi vits,./ Three times  a week: B12 injections (Hydroxycobalamin). Deer antler./  Once every few months methyl B12 Methyl injections

oil info

Homina,

I am using a curcumin oil (tetra hydra curcumin) from :

http://b12oils.com/contact.htm<

you need to send him an email (the product is not on his website yet). Note this oil you rub on your skin.

I am not getting a herx from 10 squirts of the curcumin oil. (hooray!)

I started off with 1 squirt on a monday. then wait 7 days, then 2 squirts. Increase the number of squirts by 1 per week until you herx - then adjust the dosage to suit what you can handle!

what brand of thyme oil do you use??

How do you use it? swallow or rub on?

Many thanks for your help!
Mark 

I have been using two forms of Thyme

Hello Mark

No problem

I have used two forms of Thyme oil

Thyme Thujanol  (very effective against CPNi) From Original Swiss Aeromatics  (pricey)

http://www.originalswissaromatics.com/proddetail.php?prod=%23147<

Red Thyme Oil  From Mountain Rose Hebs

http://www.originalswissaromatics.com/proddetail.php?prod=%23147<

I think the Thyme Thujanol is more effective against Cpn but it is also more expensive

Both work

I rub it into my skin starting with one or two drops mixed with a carrier oil  (I used olive oil)

then increase the amount to as many drops as you can handle

Both create a herx

Success to you and thanks for the tip on curcumin oil

DAILY:  NACi 2400MG , DHEAi sublingual , vit D3 , multi vits,./ Three times  a week: B12 injections (Hydroxycobalamin). Deer antler./  Once every few months methyl B12 Methyl injections

many thanks Homina!

many thanks Homina!