Paula has been on the CAPi for about 6 months now.
She started on the NACi November 28th 2007, added Doxyi in Jan and has been on the full 300mg daily dose of Roxyi for 5 weeks now.
Not many improvements in her condition to speak of as yet, but as she is so severely effected we are taking this protocol very slowly.
As she is tollerating the Doxy, Roxy and NAC so well, we plan to start the next stage of the protocol (Tinidazole) towards the end of July as it is said to give the Roxy 2-3 months before adding Tini.
Her mucal discharge still continues, but she does have days when it doesn't appear (she has barely "hockled" at all these past couple of days for example, but Wednesday she must have gone through at least 1 toilet roll per hour ). We are still unsure where it comes from, but sometimes it appears at the same time she gets ear, teeth, and jaw pain alongside a stuffy and/or runny nose. Other times it appears a day later or earlier. Could it be NAC flu? - Who knows as she started getting it when she started the full dose of Samento in July 07, 4 months before starting the NAC. She still continues to take 15 drops of Samento daily.
As Paula has trouble with glucose because of glyceimic issues see :-
http://www.cpnhelp.org/problems_with_glucose_pow
I got her some D-Ribose powder. She is also having trouble with this, but in a different way. With the glucose, she had too much of a rush of energy that her body couldn't handle it (like she was running, but obviously wasn't), giving her rapid heartrate. With the ribose, after taking 1 teaspoon of the stuff in water, all of her CFSi symptoms increased massively, especially fatigue and air hunger. She is planning to slowly increase the dose of ribose - very slowly, and hope that the bad effect she got will gradually reduce in strength.
Did anyone else with CFS have this type of reaction to ribose?
Could the ribose be working like pyruvate does - bringing cryptic cpn out of hibernation, giving the increased fatigue symptoms?
If Paula isn't able to tollerate ribose, we may have to go down the route of pyruvate instead. Her porphyriai is improving with the taking of 14 caps of charcoal twice per day and 7 caps of Chlorella twice per day, but we do realise that as well is reducing the porphrins in the gut, she needs to take glucose/ribose/pyruvate to stop the generation of more porphyrins.
Or maybe we should forget about ribose and slowly increase glucose?
Glucose, ribose, or pyruvate?
So to cut a long story short - slow and easy does it.
Mark
___________________________________________________________
UK Carer of bedridden Severe ME/CFS Feb06. CPNi dx. Apr07. Samento 15 drops per day July07. 2400mg NAC 200mg Doxyi Jan08. 300mg Roxyi Apr08.
:-) UK Carer of bedridden
:-)
UK Carer of bedridden Severe ME/CFS Feb06. CPNi dx. Apr07. Samento 15 drops per day July07. 2400mg NAC 200mg Doxyi Jan08. 300mg Roxyi Apr08.
___________________________________________________________
UK Carer of bedridden Severe ME/CFS Feb06. CPNi dx. Apr07. Samento 15 drops per day July07. 2400mg NAC 200mg Doxyi Jan08. 300mg Roxyi Apr08.
Mark- Hard to tell what her
Mark- Hard to tell what her reaction to ribose is. Her functioning has been so low that anything that boosts energy and, say, immunei functioning could generate a short-term die-off reaction. It would be interesting to see if pyruvate does the same, in which case you could make a case for both d-ribose and pyruvate bringing cryptic back into RB where the abxi kill them-- causing die-off reactions.
I'm heartened to hear her noticeable improvements. Your slow and steady approach seems to have done the trick, and is paying off. I'd encourage you to hold off the tinidazole until you try the pyruvate/ribose "test." Why? Because if it is working to convert cryptic, it would be better to work up to a clinical dose of pyruvate (or ribose if it seems to have that affect) with just the antibiotics so as to winnow down the cryptic load. This will make the pulse much easier!
Remember also, with the pyruvate at least but you could see if the ribose has similar use, you can add additional dosing to help counter both porphyriai and die-off effects. So try an added dose if she's having reactions (cautiously of course).
CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 300mg Roxithromycin, Tini 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3
___________________________________________________________
CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3
I read a book once about a
I read a book once about a man who tracked down parasitic organisms in his body that seemed to cause him a lot of symptoms whenever he ate glucose/high energy foods. He said that he felt as if they became active as soon as they had a wiff of what they needed, namely energy, causing him symptoms like swelling, rapid heart beat, giddiness, nausea etc.
I know nothing about the processes taking place here but if what he describes is right there is a kind of recognition on the part of these parasitic organism of the approach of food. Sound familiar?
Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
___________________________________________________________
Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
It is strange because as you
It is strange because as you know Paula always doses new supplementsi very slowly to check for any adverse reactions. To check she wouldn't have a reaction to ribose, she tried Now Foods ribose in capsule form:-
http://www.iherb.com/ProductDetails.aspx?c=1&pid=522
She would take 4 or 5 of them 4 times per day. She didn't have any effect from them at all - good or bad. Maybe this was because they were in capsule form and took longer to absorb than powder.
The powder she is using comes from :-
http://www.muscleform.co.uk/Store/Energy-$4-Fatigue/D$9RIBOSE-ATP-Fuel
What she is trying to do to tollerate ribose better is put 1.25grams of powder into a 75ml bottle of drinking water and takes a few swigs from the bottle - but she immediately gets a reaction to it, especially increased fatigue and a cough she says. Her last dose of abxi was 6 hours ago, so I'm not so sure if it would cause die-off this long after the last abxi dose.
She says that the cpni seems to be getting all the benefit of the ribose and not her body.
I'll try to get her to gradually increase the ribose if she is able and I'll look into getting some pyruvate.
Thanks,
Mark
UK Carer of bedridden Severe ME/CFS Feb06. CPN dx. Apr07. Samento 15 drops per day July07. 2400mg NAC 200mg Doxyi Jan08. 300mg Roxyi Apr08.
___________________________________________________________
UK Carer of bedridden Severe ME/CFS Feb06. CPNi dx. Apr07. Samento 15 drops per day July07. 2400mg NAC 200mg Doxyi Jan08. 300mg Roxyi Apr08.
> ... seemed to cause him a
Yes this does sound familiar! This is what my Cpni is like. Less so now than it used to be, but it still reacts to the foods I eat. Anything sugary / processed is guaranteed to give me pressure in my left ear and get my throat/neck going.
On the subject of Ribose when I first started taking it I found it *very* sugary and would react negatively from it. Now less so - I think because I immediately follow it with a big gulp of water and then a meal. I don't have strong reactions to it any more, but it wouldn't surprise me if it did act like sugar in many ways (e.g. feeding bad bacteria in the gut). Not sure whether Cpn can utilise it. The jury is out for me whether it is doing any good, but at least by taking it with water/food you minimize its high glycemic index.
CFSi. Started CAPi 03-07. Currently: Roxi 600mg + Doxyi 200mg . Tinii pulses 1000mg. Sauna QOD. D 8000IU. Niacini 3 x 500mg. Mel 3mg.
___________________________________________________________
Hunter: Don't think - experiment
Paula had some d-ribose
Paula had some d-ribose before taking the Doxyi and Roxyi today and she had a big fatigue "crash" within a minute of taking the abxi. She wants to give ribose a rest for the time being. It is looking likely that it is bringing the cpni out of cryptic like the pyruvate does. I know that it says on the tin that the ribose can form pyruvate.
Garcia, the reaction that Paula has to d-ribose doesn't seem to be a glycemic reaction. She had a glycemic reaction to glucose, where her heart would race after taking it.
About an hour after the abxi, her crash has abated a bit.
And low and behold, her hockling is back today after about 3 days of respite.
Still stuck with what to do next.
Maybe:-
1) Give her the ribose between doses of abx in the way people normally use glucose for - ie to reduce porphyrin production. She will have to slowly build up on the ribose though to reduce adverse reactions.
2) Order some Calcium Pyruvate and take that to bring the buggers out of cryptic prior to blasting them with the abx. As Jim has said, she must have a massive bacterial loadi and she may be able to cope with RB die-off reactions a lot more than too much cryptic die-off with the Tinii full belt.
3) After 2 or 3 months bringing down the cryptic load in the pyruvate way, SLOWLY introduce a mini pulse of Tini.
So ribose and pyruvate - could this be a bit of an overkill? What do you think?
Things are getting even more complicated.
UK Carer of bedridden Severe ME/CFS Feb06. CPN dx. Apr07. Samento 15 drops per day July07. 2400mg NAC 200mg Doxy Jan08. 300mg Roxy Apr08.
___________________________________________________________
UK Carer of bedridden Severe ME/CFS Feb06. CPNi dx. Apr07. Samento 15 drops per day July07. 2400mg NAC 200mg Doxyi Jan08. 300mg Roxyi Apr08.
Paula started taking the
Paula started taking the ribose again and found she could tollerate it a bit better now, other than when she takes her abxi, when she crashes - This has happened twice today within 10 mins or so of taking the abxi.
UK Carer of bedridden Severe ME/CFS Feb06. CPNi dx. Apr07. Samento 15 drops per day July07. 2400mg NAC 200mg Doxyi Jan08. 300mg Roxyi Apr08.
___________________________________________________________
UK Carer of bedridden Severe ME/CFS Feb06. CPNi dx. Apr07. Samento 15 drops per day July07. 2400mg NAC 200mg Doxyi Jan08. 300mg Roxyi Apr08.