Cpnhelp.org

Dear Michele, I am Sarah, Dr Wheldon's wife and I run this site with MacKintosh, another person who developed MS. you are very praiseworthy in wanting to help your wife in this way. Now, two people have posted in the past that they were treating for their non-bulbar onset ALS but neither of them posts anymore, so it maybe didn't work.

However, your wife is still alive after nearly two years so for her type of ALS you must be helping. 

However, the correct dose per day is 200mg, to which you should add either roxithromycin, which I took, or azithromycin, as here: Treatment Protocols | Cpnhelp.org

Two hours apart from the antibiotics she must take some probiotics which at the very minimum should be a cup of live yoghurt.  This is important with long term antibiotics.

Sarah

Hi Sarah, thanks for your reply.

I am building up, on 17th of January we will have blood test and we will see how is going and I will increase dose of doxy to 200mg.

I have all the supplements as recommended by the protocol.

Our main problem is swallowing and choking.

Of course is not easy by all means but we want to fight till the end.

Best regards

Hello Michele, the most important part of the protocol is the antibiotics but in your case, as you say, you have to be very careful about choking, so I guess that you are giving your wife live yoghurt for the probiotics part.

Vitamin D and B12 are the most important supplements in the protocol.  I hope that you are making some headway with this.

Sarah

Thank you Sarah for you valuable advices.

She is taking probiotic at the moment, also B complex vit. and vitamin D.

She got a black stain on the tongue which is now getting better, as far as I could understand This was due to doxy?! 

Regards

Michele

Michele, yes, tongue discolouration. This is something that I had forgotten all about. I used to use a soft toothbrush to clear it. Also using hydrogen peroxide as a mouthwash helps greatly.

Sarah

Hi Sarah,

My wife is now on the 24th day of CAP, two days ago she increased Doxy from 100mg to 200mg and NAC from 600mg to 1200mg.

As for the second antibiotic we have roxythromycin available. 

Once she starts taking roxy this should be taken on Mon.Wed.Fri.  or everyday?

Will Doxy and Roxy be taken together at the same time?

Can we build up with it starting with 150mg and slowly move to 300mg?

Thank you in advance

Regards

Michele

Hello Michele, roxithromycin should be taken every day, but it is much easier to manage than azithromycin.  Now, how does your wife take doxycycline: in one go or twice a day? When I stated taking the protocol.I took doxy ad roxy twice a day but both at the same time. If you don't do something like this, then every time you open your mouth, it is to take more antibiotics. I think that sometimes your wife might justt sit down and like to have just a cup of coffee!

Sarah

I noticed some things similar to what Deanna did, who is one of the very few ALS reversals.

I lost my sister to ALS 4 years ago but I've continued to study it and a big difference that I think may be important is how Deanna worked to restore gut microbes and took butyrate.  There is evidence of paneth cell dysfunction and the butyrate helps with that.

Here's her story, https://winningthefight.org/deanna-stem-cell-therapy-results-2/

I really believe there is infection in ALS, but there is also huge dysbiosis and fungal issues.  I remember 3 pALS trying something antifungal, where one was an ALS reversal, who had no problems with this protocol, but the other two got so very sick from it, so whatever you do, caution is in order.

The ALS literature also suggests there is amino acid imbalance.