Newbie questions

hi..  first off, i REALLY appreciate  any response from current members..  i am new to CAPi.  i just started over a month ago..  though side effects have been a bit harsh, i feel no pain, NO gain mentality .. 

i have a few questions in regards to the length of treatment..  i know physicians really encourage at LEAST 12 months, but my question is, is that more for patients with MSi?  my physician, though i dont talk to them often (too expensive) she did mention for me to take the antibioticsi for 6 months..  maybe from there they want to see how i'm doing, but i really got the impression from them that my bacterial loadi should be reduced after 6 months..  as for testing, they just tested my mycoplasma titers (both high), but i NOW know that is NOT truly accurate and should have had a PCRi performed..  so i guess i really dont have a TRUE starting point, but does EVERY member have to take antibiotics for >12 months?

i also wanted ANY feedback on boosting ones immunei system.  my current physician has a detailed protocol for chronic fatigue..  one of the first things they do is supplement all deficient hormones (as hormones are VITAL immune modulators)..  so the first 6 months of me seeing them entailed me fine tunning my hormones..  its ONLY then that he works on any chronic infection (if patient is still ill)..  well, it was THEN that they prescribed me antibiotics..  so without dragging this blog too far, does any of the members do things to modulate their immune system?  that way, when the bacterial load does get to a point when ones immune system can handle the pathogens, it will be stable?  with me, they state that my thyroid, testosterone, GH (though i cant take because of $$), vitaminsi, herbs, probiotics, etc,  can help boost ones immune system..  i would love ANY input on any immune beneficial supplementsi...

 

well, i encourage any comments..  =-)

 

 

                                                  Keith

Comments

 I originally sought

 I originally sought treatment for asthmai and had the same question. I had read stories of people getting rid of their asthma in just 3-4 months using only Zithromax. So if I don't have MSi why do I need a whole year of abxi and do I need to take a combination of abxi? But after thinking about it some more I think it's a good idea. I speculate that Cpni is easier to get rid of from tissue like lungs that have an enormous blood supply because it's easier to get the abx and nutrients to the infected tissue there. With something like nerves, joints, connective tissue, etc, that has little or no direct blood supply it is a lot more difficult. Nutrients and abx can only enter these tissues through osmosis which is much slower than through the blood. So it would seem someone seeking treatment for just asthma would be able to get rid of Cpn much faster. However, that's assuming that the Cpn has not managed to spread to any other part of the body and that's a risky assumption. It is possible those people really did get rid of their asthma in 3-4 months but later went on to develop heart diseasei, rheumatoid arthritis, CFSi, or any number of things and never realized there was a connection. So although my asthma may clear in just a few months the fact that I have other ailments like hypothyroidism and tendonitis has me concerned the Cpn may be in those areas too and I should go with the full-length multi-abx protocol (assuming I can talk the doc into it).

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

At the end of the

At the end of the Stratton/Vanderbilt  protocol (version 7) as presented on this site there is a section entitled: Stratton/Vanderbilt Protocol Update (February 2006) that addresses the timeframe issue:Stratton/Vanderbilt Protocol Update: February 2006 

 

"Once a patient could do this regimen without any reactions, I would continue it for at least a year and probably three for MSi. It might take a year or two (or longer) to get to the point where there is no reaction to the metronidazolei/INHi pulse, depending on the chlamydia load, followed by 1-3 years of therapy. This might be a 5 year program, but should allow the patient to continue to work with minimal disruption. They, as you know, should also be gradually improving during this time. The sicker the patient is, the longer the therapy is going to be. There is no shortcut."

Like the posts above have said, think in terms of this being a marathon.  If you do that and prepare for a five-year program you might be pleasantly surprised to be able to stop sooner.  If you're ready to do five years then it won't frustrate you if it actually goes on that long.

CAPi for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi (3 x week). Fourth pulse metronidazole completed 1/23/2008.

CAPi for M.S. 8/2007 - 3/2009.  Twentieth pulse metronidazolei + INHi completed 3/12/2009.  Intermittent treatment thereafter until 11/20/2009.  

I am expecting a 5 year

I am expecting a 5 year marathon to eradicate all the Cpni. I hope the last years on CAPi will be symptom free. Combined Antibiotic Protocol minocycline, azithromycin, metronidazolei for muscle pain, insomnia, interstitial cystitisi, sinus, disphonia, dry eyes, stiff neck, veins, thyroid, TMJ.

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

Welcome Keith, I too, on

Welcome Keith,

I too, on initial diagnosis for ME in the USA, had to work on my hormones first.  They were like an 80 yr old & I was 49.  That is a bit of a roller coaster in & of itself that continues today.  I also added their supplementsi along with the usual I was taking. 

When my immunei system was better I also treated Lymes.  I slowly progressed & then plateaued.

I am now 7 months in on CAPi, pulse 6 underway & overall, though up & down really, I have improved about 30%.  My overall pain level is where I have seen most of that improvement & in my brain as well, fog is less severe.

I am prepared for about a 2 year battle, if it is more or less, so be it.  Having been educated as to the extent of the damage that this bacteria can do, it is important to eradicate it completely which takes time.

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonin">i, GABA, tarazadone, triazolam, novocyclopine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi 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

CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<

Sharon, I'm not sure if it

Sharon, I'm not sure if it takes less time for MS people to work up to the full protocol, I think it varies according to each person.   It took Ella a year to work up to full flagyl pulses.   She might have gone quicker were it not for the fact that she was too scared to take the full pulse straight off as she had so recently been very ill and did not want to go there again. 

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.

Hi Keith, I'm about 7

Hi Keith, I'm about 7 months into protocol. I feel 20% better. I estimate being on the protocol for about 5 years. It takes us CFSer folks longer to ramp up to the full 1500mg a day for 5 day flagyli pulses. At the rate I am going, it will be another 12 months before I can build up to tolerate the full flagyl pulses (unless they become easier). Once I am up to the full flagyl pulses (and maybe rifampin), I will stay on the protocol until I am having no reactions, probably then stay on protocol an additional 12 months, and then probably go intermittent for 2 years or so..

Remember, these buggers go intracelluar, and go deep into our organs, tissues and muscles. It takes a long time of consistent levels of antibioticsi to penetrate deep into your organs.

Also, Dr. Stratton is reopening CPNi lab. So, i do wonder in couple of years, if the protocol will change, will it be improved, will it be faster. But in the meantime, I have my mindset that I will be on protocol for several years.

In regards to your labwork, I think titers are sufficient. Most of us are diagnosed based upon our titers. Some folks (from what I have read on here) never get tested. They start on NACi and if they have reaction, then they assume themselves positive. So, dont worry about a true starting point. I think you (as well as all of us here) have a great starting point. You are fortunate to know what your problem is, and you have started treatment.

Mphs, TN. CFS, hypoT (Hashi), weak adrenals, 37 w/hormones of 80 yo. right arm neuropathy. + for cpn, myco, EBVi, CMV. on NAC 3600mg, doxyi 100-2xday, azith 250 m/w/f/sun, estriol, progesterone, synthroid, and pulsing w/flagyl.

Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, hormonal inbalance. right arm neuropathy-getting better. cpni, myco, EBVi, CMV, HHV-6. Capi began in 6/07. NACi 2400mg, minoi 100mg bidi, biaxin 500mg bidi. cytomel, flagyli bid continuously.

  Taking the antibioticsi

 

Taking the antibioticsi to get rid of the chronic infection had the effect of modulating my immunei system, so that is all I needed to do, plus some of the recommended supplementsi.

More than twelve months is required to make sure that this infection is gone.  I do know someone with CFSi who stopped after about eight months because he felt so well.  Although only in his thirties, a year later he had a stroke............Sarah

An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

We don't talk a lot on this

We don't talk a lot on this site about the role of CPni in cardiovascular disease but the association is there.  Even someone like me with no medical training could find numerous papers from peer-reviewed medical journals discussing it.  And you've got to figure that someone who is an expert in the field is familiar with his/her own professional journals. 

Case in point:  I was recently referred to a cardiologist to follow-up on my Chicago Emergency Room visit back in September 2007.  One of the things I was asked about were the medications and supplementsi I was taking.  When the doctor saw the large dose of NACi, he presumed I was taking it as part of an antibacterial treatment for M.S. and noted the same kinds of bacteria some people think causes M.S. have also been implicated in atherosclerosis so I might be killing two birds with one stone.  He wasn't willing to supervise me on the CAPi (the drugs used in the Wheldon protocol are similar to those used in the Burrascano protocol for chronic Lyme and since this state avers there is no such thing, there have been well-publicized cases of doctors prescribing antibioticsi long-term getting a call from the state medical board), still he certainly didn't discourage me from continuing on my own.

I figure even if the CAP doesn't do anything to the M.S., there's a good chance that clearing the CPn out of my system will reduce my chances for a heart attack or stroke.

Of course, if the CAP keeps me from having a heart attack or stroke but doesn't do anything to slow down the M.S. it will mean all I have done is buy myself another decade confined to a wheelchair.        

CAP for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi (3 x week). Fourth pulse metronidazolei completed 1/23/2008.

CAPi for M.S. 8/2007 - 3/2009.  Twentieth pulse metronidazolei + INHi completed 3/12/2009.  Intermittent treatment thereafter until 11/20/2009.  

Keith, I've never done

Keith, I've never done anything to boost my immunei system except take Dr. Wheldon's list of supplementsi and do the antibiotic protocol, so I can't help with all the other additions. What I can tell you is to look at the protocol in the long-term and six months isn't going to do it. Is it shorter or longer for those with or without MSi? Doubt it. The bug in your system may be manifesting itself as one disease name or another (chronic fatigue, MS, irritable bowel, chronic asthmai or sinusitis...) but the bacteria is the bacteria, and the point is to eliminate it from your body and its systems. Because of the three life-phases of this bug, it's particularly tricky to kill and eradicate from your body. It fights, it mutates and morphs into a different state, or it simply hibernates and waits out the vile antibiotics (abxi) that are attacking it. Hunker down. Get in the mindset that this will be a year or three or more and prepare to experience the rollercoaster ride. This is not a straight line, constant improvement, kind of recovery. It's up and down and all over the place, but eventually you look back and see how far 'forward' you've moved and how much you've recovered. It gets easier and the improvements are more noticeable with time.

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