9 Nov 2021
Author
marvel
Title

CAP supplements

Body

see below

 

Comments

hi,

i am going to start my CAP in the next days. right now im taking some nystatin first to get rid of candida fungus, which has been there in my stomach and gut before.

after that i will start with the ABx building up to azi (250mg), doxy (200mg) and metro pulses. im on NAC 2x1200mg already.

supplements i will be taking:

NAC, vitamin e 400iu x2, vit c 2x1000mg, vitamin d 5000, OPC (bioflavanoid, antioxidant), selenium 200mcg, chlorella + cilantro for detoxification, kimchi (probiotic), dietary fibre.

i had a look on the all supplements chart http://cpnhelp.org/publicimages/AllSupplements.pdf and https://www.davidwheldon.co.uk/supplement_rationale.html.

i am missing some things. i get my omega 3 from fish. 

i am missing b vitamins, l carnitine, Alpha-lipoic acid, Ubiquinone. anything else?

to be honest i only want to take the things i really need. i thought about adding l carnitine and a vitamin b complex (david does not mention biotin unlike the all supplements chart?).

any suggestions of things i might be missing are welcome. 

thank you

chlamydia pneumoniae and mycoplasma pneumoniae since 2015 (antibodies tested positive 09/21, no test done before); 

some days before i started the CAP i started with a treatment of nystatin (anti fungal) because last time when i had antibiotics i got some trouble with candida. i will do the nystatin 8ml/day=800.000units for 14 days. i plan on using it again and again during the CAP for prophylaxis. 

how often do you guys use an anti fungal during your CAP treatment? i thought about doing 2 months intervals. 

i also decided pausing the sauna a bit and not doing it with every dose of azi as i feel i have some die off reactions. i can still take the reactions and handle them but i think maybe its a bit too much for my body in the beginning and i dont want to overstress it although it is tempting to move forward with the healing process quickly. 

chlamydia pneumoniae and mycoplasma pneumoniae since 2015 (antibodies tested positive 09/21, no test done before); 

Marvel, I never took antifungals but I did take a few probiotic capsules spaced out from the antibiotics every day. That worked fine for me.

Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

its now 2 days since my last azi dose. i took the doxy as usual today.

today in the evening i started having a strange sensation under my left breast (male). it feels like i can feel my blood flow every couple of seconds (not as often as my heart beats) but every time i feel it it feels like its rubbing in my vessel and vibrating a bit. it scares me a bit tbh because it is not too far from my heart. anybody had something similar? 

 

thx

chlamydia pneumoniae and mycoplasma pneumoniae since 2015 (antibodies tested positive 09/21, no test done before); 

Um, no. Quite honestly the only really bad experience I had was feeling nauseous sometimes when taking doxycycline. However one of the things that David experienced, I think after taking metronidazole was a blood vessel on his left side acting in such a way that there seemed to be something moving underneath his skin. This 'thing' looked as though it was running up his chest to his shoulder. A few moments later it would run back down. This only lasted about half an hour each time it happened. You might be experiening something similar.

Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Marvel, I am glad that you are still alive! Here is a very good probiotic to take which will help you to stay alive even longer. I don't know which country you are writing from but Amazon in any country should have Jarrow formula:

Amazon.com: Jarrow Formulas Saccharomyces Boulardii + MOS, 5 Billion Organisms Per Serving, Probiotic + Prebiotic, Intestinal Tract Support, White, 180 Count : Health & Household

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

thx sarah. im in thailand atm (i can recommend this if someone is sick like me and can afford it. the weather is good for my health and ABx are sold over the counter. super convenient.) i will have a look.

i feel a bit like the flu right now in the sense that i feel weak and groggy. i did not have this when i started the NAC. NAC only gave me headache. but i guess its coming from the CAP treatment.

sarah did you do the sauna while being on CAP?

furthermore in which way is cpn susceptible to heat? i have not come across any information about this. i know for lyme there are the treatment approaches with hyperthermia and fever therapy. does this make sense in cpn too?

chlamydia pneumoniae and mycoplasma pneumoniae since 2015 (antibodies tested positive 09/21, no test done before); 

Hello Marvel, I can't really say how much Cpn is susceptible to heat because on this site different people seem to be affected in different ways. The internet has certainly come a long way since I finished my course of treatment in 2007 and there are now countless Lyme disease treatments. Since Cpn and the bacterium causing Lyme disease are different things, the only thing to do is first stamp on the infection then experiment with any of the Lyme treatments that take your fancy whilst taking the undeniably long treatment.

As for myself, I don't do well in very hot weather.  David bought a sauna but I didn't like it and only used it twice. Now I have given it away.

Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

im getting kind of disfunctional and feel a lot brainfog and pain in my legs, back and head today and yesterday. i took some ibuprofen today and i guess i will keep on taking it if i have symptoms like this because it is also anti inflammatory.

im just putting this down here so someone might learn from it: 

im not sure why im getting these kind of symptoms now because last time when i was on mino, azi (even 500mg) and tini i did not experience these symptoms from the medication. my guess is that i started the doxy and azi together this time and not like last time when i only added azi after 1-2 months when i guess a lot of the cpn were already converted to cryptic state and could not be killed by azi. i guess im getting a lot more die off this time which might be a good thing if you rather kill cpn in the non cryptic state (thats also what the purpose of pyruvate is). neverthless if i stay in this state longer i consider on cutting down on the doxycycline to get some relief and be more functional again.

 

any input is appreciated!

chlamydia pneumoniae and mycoplasma pneumoniae since 2015 (antibodies tested positive 09/21, no test done before); 

Marvel, I really have no idea why you are in so much discomfort. When I started the treatment for the one and only time, I started on doxycyline at the full 200mg then two or three weeks later added roxithromycin again at full dose. i had no pain but a little discomfort with the doxycycline for maybe half an hour. After three months I added five day pulses of metronidazole and then after a year I started doing intermittent treatment.

I think it was during my third metronidazole pulse, I experienced excruciating pain in my right arm but only during that pulse and for a few days afterwards. I think that must have been the main killing phase of the infection because I was never troubled again.

This makes me think that maybe metronidazole is a more powerful nitroimidazole than tinidazole (and not roxithromycin as I accidentally wrote,) which I did start taking but only once I had begun intermittent treatment.  

Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

yes i can understand you as i did not have much trouble last time either when i started with a tetracycline and added azi some weeks later. 

"This makes me think that maybe metronidazole is a more powerful nitroimidazole than roxithromycin, which I did start taking but only once I had begun intermittent treatment.  "

did you mean tinidazole instead of roxi? because roxi is a macrolide and i guess you took this one continuously with the doxy? 

chlamydia pneumoniae and mycoplasma pneumoniae since 2015 (antibodies tested positive 09/21, no test done before); 

Where I say 'ROXITHROMYIN' in the last paragraph of my previous post, please read 'TINIDAZOLE' which actually IS a nitroimidazole! Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

thx a lot for the clarification.  this could be a really important hint to me and others because i was taking tinidazole for the pulse the last time i was on mino and azi but i did not feel anything from the tini. i did only around 3 pulses but nevertheless i want to try metronidazole this time to see if it makes a difference.

 

 

chlamydia pneumoniae and mycoplasma pneumoniae since 2015 (antibodies tested positive 09/21, no test done before); 

in the handbook according to stratton: "The next step would be two weeks of a macrolide (clarithromycin preferred because of higher levels obtained, roxithromycin, or azithromycin) with 6 grams of pyruvate given 1 hour prior to the antibiotic dose. In addition, 400 mg of Ibuprofen should be taken twice a day along with 1,200 mg of NAC twice a day. " 

"For those that have a major side effect on the pyruvate/macrolide alone, I'd continue to treat with the macrolide alone until the side effects are manageable. For those that don't, I'd add doxycycline 100 mg twice a day with 6 grams of pyruvate 1 hour before. Continue the NAC and Ibuprofen." 

"I would continue to monitor titers every several years. If the titers increased, I'd retreat with 6 months of clarithromycin or roxithromycin plus rifabutin plus pyruvate and ibuprofen."

in the summary chart of the different CAPs ibuprofen ist not mentioned. what is the exact purpose of the ibuprofen? is it just for managing pain reactions from the die off? or also to contain inflammation? i dont have much pain today but im wondering if i should still take the ibuprofen today? how long can you take the ibuprofen? 

EDIT: https://www.reuters.com/article/us-painkillers-risks-idUSBRE94S1FV20130… the stratton protocol is kind of old from 2006/2008. the knowledge of ibuprofen has changed i think. 800mg is not too high of a dose but when you take it over months it might become problematic i think.

chlamydia pneumoniae and mycoplasma pneumoniae since 2015 (antibodies tested positive 09/21, no test done before); 

Well, it depends on which doctor's CAP you are following. Personally I think the simpler the better and since my MS didn't involve pain I never took ibuprofen, which I would guess it was for. Do as you wish.

Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

ok i reduced dosage to 100mg doxy/day and 250mg azi MWF. hope this is not a mistake. 

need to go slower. still taking 400mg ibuprofen/day with it for now.

chlamydia pneumoniae and mycoplasma pneumoniae since 2015 (antibodies tested positive 09/21, no test done before); 

Well, that is for you to decide.

Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

small update: 

im still on doxy 100mg/d, azi 250mg MWF and NAC 2x1200mg daily + supplements. its now 3 weeks since start of CAP. i started seeing improvements yesterday evening feeling more present and less in my mind. it continued today and im still feeling more present and feeling also better emotionally, being more at peace. i also have more energy in the last days. still being far away from being cured but improvements are coming. i could cut back on the ibuprofen in the last days too but im still waiting to increase the dose of doxy to 200mg/day.

ecg qtc time in the normal range. 

chlamydia pneumoniae and mycoplasma pneumoniae since 2015 (antibodies tested positive 09/21, no test done before); 

Small improvements but a good one!

Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

im still so brainfogged. can not read anything basically above some sentences now. only easy english. 

sarah i read you lost your mental fog after 5 days being on doxy? what were your symptoms before? this brainfog is so frustrating. i have memory issues, concentrating, my thinking does not even start when i want to solve a problem usually. my whole cognition is fucked basically. in this state i can not even watch a tv series. i can almost do nothing mentally right now. its a total nightmare.

last time i was on mino, azi and tini the brainfog did not go away but at least my then depression cleared quickly. 

chlamydia pneumoniae and mycoplasma pneumoniae since 2015 (antibodies tested positive 09/21, no test done before); 

Marvel, whilst I don't think that I was ever unable to only read a few simple words, by 2003, I had totally lost my ability as a fine-artist. This was my life, now gone. I was diagnosed with secondary progressive multiple sclerosis and the neurologist told me that my painting days were over.  

Have  a look at my website and you can see how much new work I have been able to produce since 2003 - Sarah Longlands - Her Recent Work.  This infection affects different people in many different ways and to me, this was the worst possible way.  I did start to recover in some ways very quickly but other ways took longer.  In fact, I still can't run but at school I was a long distance runner, but art was my life.

Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

i see. this disease hits everyone in a different way i guess. 

in the summary chart here http://cpnhelp.org/summary_chart_of_differen

the stratton protocol is a different one compared to here http://cpnhelp.org/emerging_stratton_protoco

i think it is due to the fact that he updated the protocol in 2008 and did not mention INH anymore and also uses a different approach when to start using rifabutin or rifampin. 

i can not make sense out of this: "If titers were low, I'd add rifampin or rifabutin (preferably), using the rifamycin with pyruvate taken 1 hour before the rifamycin."

im far from this but maybe someone can explain to me how this is meant because i hope to get to the point where i can finish this whole disease with rifabutin. did he mean take the rifamycin (antibiotic class) 1h before the doxy, azi and metro? 

 

 

i also did some reading with my limited possibilities on azithromycin: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6784251/

i dont post this to scare anyone but i have read some ppl here use 500mg azi instead of 250mg. personally i would not do this at least not in my situation. i go as low as possible and as high as necessary. 

i ordered some superoxide dismutase as a consequence: We also found that superoxide dismutase (SOD) could prevent mitochondrial superoxide production induced by azithromycin when 100 u/mL of SOD was added to the media with 188 µg/mL azithromycin (Figure 8c and Table 2).

make sure to get the gliadin version or you will get close to 0% bioavailability https://pubmed.ncbi.nlm.nih.gov/25701330/

importance of NAC to protect against damage done by ABx: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3760005/

 

in case someone reads any of the above studies (because i certainly cant) i would like to know

can the damages done by azithromycin be reversed or are they irreversible? 

is 2400mg/d NAC enough to give protection against ABx?

chlamydia pneumoniae and mycoplasma pneumoniae since 2015 (antibodies tested positive 09/21, no test done before); 

Marvel, it certanly does and both Mackintosh and I had multiple sclerosis, deemed an incurable disease until Stratton and Sriram at Vanderbilt University noticed the similarity of certain mri scans.  It should be noted that Mackintosh has never taken rifampiin or INH and. I have never taken INH. I was only put on rifampicin for six months because in those early days David was unsure about keeping me on the same thing for too long  When I started on intermittent protocol I had to stop rifampicin.

Norman Yarvin might be able to explain the rifa tablets to you but I never bothered with them because I just didn't like them.

Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

i still have some weird heart beating since im on azi and doxy. i guess its coming from the azi because it can cause problems to the heart. im doing ecg regularly and so far everything is fine at least to the doctor. im not sure how much you can see in an ecg though. its even hard to describe it for me whats going on. my heart beats harder sometimes, but not faster. it just feels irregular and weird sometimes. of course it worries me a bit. 

im hesitant to switch to another ABx like roxi because i can feel the azi and doxy combination doing its job. can i make a switch or will this put me at risk for the bacteria becoming resistant or something? 

i hope somebody can give me some advise. 

 

EDIT: i read the prescription leaflet of roxi too. it also says it can cause problems with the heart. no clue why they have it in there because i thought roxi does not cause this. maybe for safety or maybe its also disputed if it can cause problems or not. this confuses me even more. at least nothing bad has happened from azi so far...

chlamydia pneumoniae and mycoplasma pneumoniae since 2015 (antibodies tested positive 09/21, no test done before); 

As far as I’m aware, all macrolides are associated with a small increased risk of long-QT.  There tends to be less info available about roxithromycin, as it isn’t licensed in many countries. I’ve taken roxithromycin for many years without problems. I’ve never had any problems, either, with swapping between various abx within the same class during treatment.

Neuro symptoms & many health problems from 1989. NAC+all supps(04/11) CAP(05/11-10/17)

Marvel, actually, the only things that you certainly must take to recover are the antibiotics and certainly some probiotics for comfort. You will know what vitamins you must take in order to live but anything else is your choice.

David used to get amazed at some of the things mentioned on this site, where the main purpose was merely to reduce your bank balance.

Sarah

 

 

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

thank you sarah.

i am a little bit surprised about your reply. i think i expressed myself not properly when i said "to be honest i only want to take the things i really need".

i only want to take the things which are highly recommended.

what is really necessary are probably only the antibiotics like you said yourself. of course you can recover on them alone but that might not be the best thing for the body to get through the process. 

so are there things which i should add which are highly recommended? e.g. i dont want to take Ubiquinone (antioxidant) because i think i have enough antioxidants already. or maybe this is a bad idea? i just want to make sure i do this properly.

thanks everybody for their help.

chlamydia pneumoniae and mycoplasma pneumoniae since 2015 (antibodies tested positive 09/21, no test done before);