JUST started CPN protocol

wow, i dont know where to really start without saying HELLO first.  its been a LONG 8-10 years of being sick, seeing MANY physicians, and thousands of $$$ later before i really have some what of a guide to getting well.  to just give you a BRIEF summary of my illness, i worked for a poultry processing plant for >10 years and @ the time did NOT think it would cause such heartache, but in a educated hindsight, it created my current condition.  prior to working there i was ENERGETIC and full of life.  well, because it was SUCH a subtle deterioration i didnt put my finger on the enviornmental toxins until 2-3 years ago.  some of the few things i contracted while working there was eczema, asthma, fatigue, brain fog, dry skin (my skin had always be sooooooo oily) among other things.  well, i dont want to go into GREAT detail with the physicians ive seen, what they told me, and HOW i ended up with long term antibiotics..  what i do know is i feel confident that its really what i need.  ive been telling physicians for years that i had a CHRONIC infection..  most would LOOK at me and say "you cant!  that would mean your had sepsis and would NOT be alive."  well, since i JUST started the protocol (finally found a physician willing to think OUTSIDE the box), i would like to ask some VETERANS on some side effect questions...  now i know there are other threads that discuss these topics, but i would LOVE some other insight...

1) skin conditions: i have NEVER had acne, but since starting the antibiotics a month ago my skin is BREAKING out.  are these toxins excreted through my skin?  they look like BIG red bumps that your unable to pop.  also, i have also had minor bouts of red dots on my arms that would come and go.  well, NOW that ive started antibiotics they are soooo pronouced..  does ANY of this skin effects go away?  if so, how long does it take?

 2) sleepiness: now since ive been sick i have days where i am reallllllly fatigued and need LONG afternoon naps, but since starting the protocol i sleep a total of 12-14 hours day..  how long until i see any relief?  i know it depends on ones toxicity, but in general when will i see relief?

3) eczema / dermatitis :  has anyone seen relief or resolve from this?

4) dilated pupils:  i know this might seem FAR fetched, but has ANYONE had any symptoms of dilated pupils?  i KNOW the infection is causing HAVOC on my sympathetic/parasympathetic system!  well, sometimes my pupils are dilated like a CRACK head feining for a HIT!  my thoughts are my chronic infection caused an adrenal dysfunction (decrease cortisol) that creates a compensatory reaction to produce adrenaline (causing dilated pupils)..  well, i'd LOVE to hear anyones thoughts..

5) mercury toxicity:  anyone have experience chelating?  ive done it for a while, but curious if anyone sees a relationship between the two (chronic infection/mercury toxicity)?

6)  my dad has a LONG hx of heart disease (multiple angioplasty's, triple bypass, etc).  well, i have cholesterol problems too.  i am skinny, but i have NO endurance and a minor climb can cause exertion.  can a CPN overload cause this exertion?  i TRY to run, but can NEVER seem to work up ANY endurance..

7)  anyone have ANY experience using accupuncture for lympatic drainage or to facilitate detox? how about yoga?  i TRY to stretch, but my muscle seem to be in a CHRONIC tightness phase..

8)  anyone have experience on supplements/prescriptions to help detox and removal of toxins?  has anyone tried cholestyramine?  i have tried (after physicians recommendations), but it really fatigues me for 24-48 hours..  any other suggestions?

well, i'm not too sure how this site works, but i do know it can be informative..  when i have questions should i start a new post or should i post off an old thread?  well i want to wish EVERYONE a healthy 2008~  i also encourage ANY california members to e mail me..  i'd love to hear about their physicians and maybe i can educate them on where ive been and who i am currently going to..

                                                 Keith Cool

Doxy 100mg 2X's/day; Zithro 500mg MWF; Flagyl Pulses; NAC 2400mg; Testosterone 200mg; Armour thyroid 3 grains; Cortef 15mg; life extension vitamin/minerals
Doxy 100mg q12hr; Biaxin 500mg q12hr; Amoxicillin 500mg q12hr;  Armour 1 grain; T3;  Cortef 15mg; 4000 units Vitamin D; Ursodiol; prescription enzymes; life extension vitamin/minerals

Keith, Oh, my gosh! Where to start!?! First, welcome! I'll answer a few and many more will come along to answer, too. Skin eruptions are nearly standard here at the beginning of treatment. Nothing to worry about there. Skin is your largest organ, so why wouldn't cpn toxins seep out through it if it's infected? Makes sense. Exhaustion may have zero to do with heart disease. Though, since arterial plagues often show cpn in them, you're doing yourself some good there, too, by undertaking antibiotic treatment. Most of us here have experienced that debilitating kind of exhaustion that makes you think you've lost your mind and not just your muscle tone! ;-) (That went away pretty early on for me, but I'm an MSer and your disease might manifest differently.) Several people here have done the chelation route. Watch, especially, for a post from Cypriane about this. Sounds like you're finally doing everything about as right as you can for yourself. And don't be surprised if you get a message from Michele asking you to privately provide your doctor's info for future (kept private and off the board) reference. Wow! Great to have you join us!

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Hi Keith, I've sent you a private message explaining some of the vagueries of this site, and if you feel you can, please reply to it with the name and contact details of your doctor.   Please don't post it here unless you know he is happy to have his name associated publicly with this treatment.   We prefer the keep them off site.

Now for the questions:

-how long? - how long is a piece of string, not everybody's load is the same, but I would reckon on months rather than weeks.   I've been on the protocol close on two years and I still get skin erruptions although not as bad as in the first few months.   When you consider that Cpn is a vascular disease, it is not surprising that the skin is affected.   There are blood vessels to everypart of your skin so therefore there is probably Cpn too. 

-skin erruptions - very common, does get better.

-dilated pupils - could be a sign of some neurological involvement.   My daughter had this in one pupil.   Now more or less back to normal.

-exhaustion - very common does get better but can come on again at or after a pulse when the body is dealing with endotoxin and porphyria.

Finally many of these questions have answers within the site and I recomment that you read parts of the handbook.   Take your time there is a lot of information here.   What we tend to do as members is to answer stuff we have personal experience of, so you won't get a complete answer from any one of us but you might well find the answers in the site.   Try doing a search for cholestyramine and mercury detox.

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

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

I also have the dialation in one pupil (right eye)

pimples came with doxy and night sweats.

fatigue; be careful with the strenuos exercise, these insidous bacterias deplete your cells energy (ATP) leaving them in a critical state nutrient deficient.  This may be deleterious to treatment and progression as it was in my case (kick boxer)

One of the main things that haulted my progression was not controlling yeast, so try to pay extra attention to that if it becomes a problem

Anyone who thinks Yoga is a sissy sport is dead wrong.  I say this because Yoga while sick may be a daunting task to say the least.  I kick box and Yoga wore me out and I relapsed hard.

Now stretching is the thing to work on.  Get your flexibilty up as much as possible.  It also creates an enormous amount of good blood flow with out over taxing your abilities.  I do a lot of my stretching in a hot tub with 2-3 cups of epsom salts and a chlorine removal ball. 

If you try this in the tub you will find your flexibilty increases enormously.

These bacterias are very inflammatory and this may be why your muscles are so tight.

While not advocated too much on this site, a trial of Benicar to tolerance will help ease some of your inflammation along with the antibiotics and proper supps and nutrition

I have more to say on this later















































 There has been some great comments here. I did want to add that you may or may not have gotten myco from the plant. Dont beat yourself up over that. The myco and CPN is airborne. You could have gotten it at the grocery store, a co worker, going to mall, the mailman could have brought you a package to your front door and coughed.  My daughter is 11. I got her tested in december for myco and cpn just for a baseline (i have myco and cpn, my sister has myco).  My daughter had no symtpoms, no recent colds, coughs, etc. Much to my surprise, she came back positive for myco in acute form.  

I worked as a nurse on a cystic fibrosis floor. They have all kinds of stuff in their lungs. I may have gotten myco and cpn there, but not sure. I never had pneum or respiratory infection that needed treatment during those years, or ever. So, who really knows where I got it from.. so dont beat yourself up. I think we are just victims to something that we cant control..

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.

Mphs, TN. CFS, hypoT (Hashi), adrenal fatigue, hormonal inbalance. right arm neuropathy-getting better. cpn, myco, EBV, CMV, HHV-6. Cap began in 6/07. NAC 2400mg, mino 100mg bid, biaxin 500mg bid. cytomel, flagyl bid continuously.

I also try to run. I can't work up any speed, and am worn out after 5 minutes. I do 10 chin ups letting my legs do most of the work. After doing this for 15 years, I chould have worked up to being able to do one chin up without my legs. I have started taking cholestyramine to mop up porphyrins. I think I have 50 years worth of porphyrins built up in my muscles. No wonder they are tight and won't work right. I get tired of physicians telling me I am healthy. I am glad you found a physician who will think outside the box. Combined Antibiotic Protocol minocycline, azithromycin, metronidazole for muscle pain, insomnia, interstitial cystitis, sinus, disphonia, dry eyes, stiff neck, veins, thyroid, TMJ.

minocycline, azithromycine, metronidazole 2007-2009, chelation for lead poisoning, muscle pain, insomnia, interstitial cystitis (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (no longer hurt)

I have done cleansing for heavy metals, candida as well as overall body.  Since starting the CAP I haven't done anything else.

I am kicking around getting another Candida cleanse due to the signs of abdominal bloating.  It is difficult to keep everything in balance; but we do our best.

sounds like you are on the right track!  remember though, go slow & expect the unexpected!

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

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<

Keith - Welcome to the site!

Here's my experience observing my husband.

1) skin conditions: exactly same problem with acne and red bumps - went away after a few months - skin actually now better than has been in long time

 2) sleepiness: my husband was extremely sleepy and lethargic - in bed maybe 23 hours a day - either asleep or just lying there - this too will get better - can't say how long - because each person is diff.

3) eczema / dermatitis :  has anyone seen relief or resolve from this? Yes - eczema on my husbands fingers and elbow cleared while on CAP in first couple of months, dermatitis on scalp got worse, for other reasons took Diflucan and the dermatitis cleared too

4) dilated pupils:  Never observed this with my husband, mostly his eyes were just glassy and watery looking

5) mercury toxicity:  yes - BUT to chelate and treat with antibiotics is hard on the body - for my husband we have decided to antibiotic first and then to chelate later - IMHO you need a working immune system to undergo chelation - antibiotics clear up your immune system

6)   NO endurance - my husband had this problem too - now he has very good endurance and can bike and walk several miles in a day

7)  anyone have ANY experience using accupuncture for lympatic drainage or to facilitate detox? how about yoga?   Yes - my husband has been treated with accupuncture with good results for both drainage and adrenal glad healing, he has also had lymphatic drainage massage (vodder) with good results, have also done Dahn Yoga

8)  anyone have experience on supplementsii/prescriptions to help detox and removal of toxins?  has anyone tried cholestyramine?  i have tried (after physicians recommendations), but it really fatigues me for 24-48 hours..  any other suggestions?  we have tried epsom salt baths, bentonite clay baths, herbal baths, etc... with mixed results, time and drinking lots of water and going easy seems to be the only thing that has helped my husband

Good luck! 

Daisy-Caregiver- Balo's Concentric Sclerosis.  CAP 5/07.  Mino, Roxy, Diflucan 1-31, Rifampin, Bactrim DS,  Novantrone, Doxy, Azith

Daisy - Husband on CAP 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MS drugs killed him.

Daisy on her own CAP 11/2012. 

Daisy, I'm curious. I've never heard of lymphatic massage therapy. What do you mean by "good results"? What did you notice that made you feel it was helping?

I get physical therapy massage for my tendonitis and I always feel horrible afterwards for days. I'm actually thinking I should stop the massage until I've been on abx for a while and my toxin load is down some. They say massage releases toxins. Maybe that's a bad thing to do while the abx are already causing toxin release. I'm thinking the double whammy is too much at once. But maybe lymphatic massage helps flush the toxins rather than releasing more?

Asthma, chronic sinusitis/rhinitis, chronic tendonitis, hypothyroid. Jan 9, '08 started Azithromycin 1000mg/week.

There is a type of massage - called manual lymph drainage.   Probably the best reserached is the Vodder Method.  Vodder method therapists are generally well trained and very knowledgable. 

Many plastic surgeons recommend Vodder massage pre and post plastic surgery to reduce swelling and improve recovery time.  Also many breast cancer patients who have lymph nodes removed find it very beneficial.  It's a very light touch - not like regular massage - but it really de-puffs you. 

For my husband specifically, we have done a lot of things to keep his lymph system moving to help hold down the side effects of everything and to help his body keep clearing toxins.  Vodder definitely gets your lymph moving. 

If you decide to try it -my recommendation is to book 3 appointments 3 days in a row and then decide if you like the results.  I like it personally because it helps your skin looked refreshed and glowing.  One treatment isn't enough to tell anything  you need at least 3 close together.


Daisy-Caregiver- Balo's Concentric Sclerosis.  CAP 5/07.  Mino, Roxy, Diflucan 1-31, Rifampin, Bactrim DS,  Novantrone, Doxy, Azith

Daisy - Husband on CAP 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MS drugs killed him.

Daisy on her own CAP 11/2012. 

One of the best, recent investments that I thought I had made was an Accuvibe massager. It is supposed to flush lactic acid from the muscles. Am hoping that it's flushing toxins, too. I usually do feel just great after using it. But, like Sunni, I have to wonder if my body is then getting rid of all of them.


Daisy:  thanks for the info on the Vodder method.






RRMS, diagnosed 2/04. NAC 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAP with NAC and Doxy 2/07. LDN 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USA

Hello everyone, I am new to this site.. My daughter was just diagnosed with CFS and CPN..She is not quite 17 I had been taking her to the doctor and telling her that there was something wrong with here she had all these headaches and was sick all the time. She wasnt able to pay atten in school. Our ped just kept saying she is fine teenagers go through this blah blah blah.. Well I finally took her to someone else and said listen there is something wrong with her. I honestly thought it was her thyroid. He ran some tests and Said she has CFS now I just have to find out why and I noticed that your ped didnt do some tests that I thought she would have done so I am going to run those and I will let you know. it came back she had Ebstien barr Virus and CPN. ( I too am waiting for my results to come back since I have CFS( which I thought was my thyroid) and FMS.. I am sure with everything I am reading that I have it since I have asthma and chronic bronc. alot with Chronic sinus infections and its contagious. Anyway enough about us.....our docs both do not know alot about the treatment for CPN and I need to make sure that she is getting the right treatment. He started her on 100mg Of Doxy 2x a day. I also went on the same script for my current sinus infection and the start of bronchitus .. My doc says this way if I do have CPN then he can get a jump on it. Any way there I go rambling again. So I was saying I don't know that she is on the right treatment...So I was wondering I see all these people on all these things is that because alot of people on this board have MS ? or is that the standard treatment for everyone with CPN. I sure would appreciate any help since our docs around here really don't know what the treatment should be I want to make sure that she is not being undertreated. I do know the doxy must be working though because she is having a lot of pain she normally doesnt have so I am hoping that is the die off. I to have been in alot more pain then normal but I thought I was just going through a flare but guess we will see tomorrow when my blood tests come back if this is what is happening to me or just a flare.. and should she have that much reaction with just one med. Also does anyone have any idea if you just have CFS or CFS/FMS what the time frame is for this treatment or is it pretty much the same as for people with all condiitons ? .. I am sure I have alot more questions but Cant think of them right now.. I will start with these and hopefully go from there .. Thanks Kim 

Kalbrent, Kim, It would be wonderful if you started a blog about the treatment of your self and your daughter.  Then you will be able to find the responses that you get at anytime you have a question.

My response is yes if your 17 year old is having symptoms as you describe that is enough for now.  You will learn more about the protocol as you participate here.  Your self well sounds like this may help you as well.  Just to know the longer you have had CPn or other stealth bacterial infections there is a fairly good chance that you will negative and still have the pathogen.  You Immune system cannot see it at times as it can be quite well hidden from view inside your cells.

Hoping to follow your blog. Louise

CFS/ME. CPnPositive.BbPositive.

Started6/24/07WheldonCAP.OnDoxy, Roxi, Tini.

2/3/08TiniPulse#4 completed.

Day 9 post pulse Cholestyramine 2 packet Bedtime for Porphoria and Die-off Symptoms Of Fatigue, Brainfog, MoodDisturbances,BalanceFromApoptosis,

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support