New- need a doctor, please help.

Hi-I am new to the site.  I am a young stay-at-home mother of 3 young children.  I have a chronic Cpni infection that I have had probably since my early teens.  I have been diagnosed with Chronic Fatigue and Fibromyalgiai.  I have read the Cpn Handbook and have even tried the NACi test.  When I tried the NAC test, I became very ill on one 600mg pill. I also tried Doxyi 100mg 2X day and had to stop with such a bad reaction.  I have titers of 1:256.  My doctor is not familiar with the CAPi.  She is willing to prescribe, but I get so sick from such small doses of the (partial) protocol that I am not comfortable moving forward without a more experienced doctor.  I want to fight this disease, but I also am a mother who can't be in bed sick all day every day. Who is the most experienced doctor to see these days?  I tried the MSi Clinic in TN but since I don't have MS, they won't see me.  Please help.  Thanks so much!

Comments

 Raven,   your doctor is

 Raven,

  your doctor is right in thinking  NO beat down Cpni, but it also cause healty tissue damage while doing that. you can see more detailed information on that link.(from physicians page)

  Nitric Oxide, CPn and MS<

 Infact, not NO but peroxynitrite (NO+superoxide) seems to be responsible for main damage. It's expected that NO would be produced in huge amounths during a chronic CPN infection. I also think that superoxide production would also be increased due to mitochondrial stress (superoxide is formed during ATP synthesis and since CPN steal our ATPs, our mitochondrias would be expected to try to synthesize more and more ATP). An enzyme called SOD would try to stop superoxide from getting out of mitochondria, but it couldn't do that succesfully if there were much amounth of superoxide, deficient amounth of glutathione, deficient amounth of selenium or existance of mercury on the medium. So this would result in peroxynitrite formation and oxidative damage.

 In my point of view; while taking such a strong antibiotic protocol, we are not dependent of NO so much, to fight against CPN. So it would be better to try to decrease peroxynite formation by all our power.

  yılmaz.

KEREM'S TAKECARER;

Suspıcıon of MSi (transient nystagmus during conjugated gaze on february 2008, blepharospazms and some optic complaints on february 2009-no plaque on MRI), Vit D3 started 400 IU and elevated to 2000 ıu ın 40 days.

If the high carbs diet is

If the high carbs diet is bad idea, then the pyruvate protocol should be harmful too as it feeds the bug also.

Stratton/Wheldon protocol 02/2006 - 10/11 for CFSi and many problems 30 years

PaulJ wrote: And trying to

PaulJ wrote:
And trying to grab ATP from mitochondria must be a risky activity, because it exposes proteins to lysosomes and the immunei system. Whereas it can execute a fermentation pathway while hiding in endosomes and keeping a quiet protein profile.
I can't agree with that one. ATP isn't just present in the mitochondria; it diffuses throughout the cell, to support energy-using activities everywhere. There's very little difference between gathering up ATP that diffuses in across the inclusion boundary, and gathering up pyruvate or other fermentable items that diffuse in. (The 'inclusion' being the endosome-like sack that contains the Cpni; the germ never, to my knowledge, does anything like sending out a raiding party to sack and loot the mitochondria.)

One subtlety about secondary

One subtlety about secondary porphyriai due to lack of glucose is that it is the generation of the enzymes needed for gluconeogenesis that induces porphyria, rather than it being the gluconeogenesis itself which does so. That means that the worst of the porphyria tends to be several hours after one eats a high-carbohydrate meal: the large amount of carbs means that the enzymes get disposed of (since they are not necessary); but then after several hours they are needed again, so they need to be regenerated. That's the part that causes the most trouble; once you get through that part, and the enzymes are regenerated, they can just keep functioning, with only minor amounts of them being generated in order to maintain their population.

This would be why eating relatively small amounts of glucose is an appropriate remedy: a few grams doesn't furnish enough energy to last you long, but it does momentarily satisfy some of the demand for glucose, slowing down the rate at which enzymes for gluconeogenesis need to be generated.

What this also means is that consistently eating either high-carb or high-fat meals is less difficult than switching between the two. That's for people who are infected with Cpni, of course; uninfected people have little difficulty generating the enzymes they need for whatever they eat.

Very interesting discussion.

Very interesting discussion. My doctor thinks increasing NO will help beat down the Cpni. I have been wearing a Nitro patch for 12-13 hours a day. It releases .02mgs of nitroglycerin per hour. Raven

Feeling 98% well-going for 100. Very low test for Cpni. CAPi since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NACi,BHRT, MethyB12 FIRi Sauna. 1-18-11 begin new treatment plan with naturopath

Very interesting discussion.

Very interesting discussion. My doctor thinks increasing NO will help beat down the Cpni. I have been wearing a Nitro patch for 12-13 hours a day. It realeases .02mgs of nitroglycerin per hour. Raven

Feeling 98% well-going for 100. Very low test for Cpni. CAPi since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NACi,BHRT, MethyB12 FIRi Sauna. 1-18-11 begin new treatment plan with naturopath

 Paul, Do you think

 Paul,

 Do you think Niacin">i and (NO) is still so necessary while taking such a strong antibiotic protocol. Infact I try to decrease my NO production(I believe that our immüne cells are producing huge amounth of iNO to fight against chronic CPNi infection) and since it will react with superoxide (which is also produced in high amounths in a chronic CPN infection which steals our ATP and force mitochondrias to produce more ATP) resulting in production of huge amounths of peroxynitrite.

 Infact I started to take NAD 500 mg daily to gether with high fat and protein diet, to prevent my cholesteroli levels get high, and I didn't worry about CPN infection would get benefit from NAD because I thought that CAPi would be enough for CPN.

  yılmaz

   yılmaz.

KEREM'S TAKECARER;

Suspıcıon of MSi (transient nystagmus during conjugated gaze on february 2008, blepharospazms and some optic complaints on february 2009-no plaque on MRI), Vit D3 started 400 IU and elevated to 2000 ıu ın 40 days.

 PaulJ;  ''whenever CPni

 PaulJ;

  ''whenever CPni grabs enough energy, it reproduces.  The goal in life of these bacteria is to divide and reproduce.  They're simple creatures.''

 Please don't call my CPNs as simple creatures, I believe they are very clever creatures:)), otherwise it wouldn't be so difficult to get rid of them.

 On the other hand you may be right about diet. I wonder whether or not this high carbonhydrate diet  might explaine some patients's unresponsiveness to CAPi, at least partially.

 If I talk about my own experience, I started to get low carbonhydrate high protein and fat diet a few months ago.(I decreased my carbonhydrate intake due to my fears about fungal infectionsi not CPN infection, because I always thought that protein synthesis inhibitors including doxyi+roxyi would be enough to stop CPN, and I increased my fat and protein consumption to increase uric asid levels which is one of the strongest scavenger of peroxniytrite which cause heavy oxidative damage and thought to take place at the pathogenesis of many disease including MSi, CAD,CFIDSi...) And I certainly started to feel better after that.

  yılmaz.

KEREM'S TAKECARER;

Suspıcıon of MSi (transient nystagmus during conjugated gaze on february 2008, blepharospazms and some optic complaints on february 2009-no plaque on MRI), Vit D3 started 400 IU and elevated to 2000 ıu ın 40 days.

garcia - 70% fat calories is

garcia - 70% fat calories is easy, most animal foods are about this ratio.  A lean human body is about 74% fat 26% protein by calories; most animals have the same ratio; eggs are 68% fat 32% protein calories.  If you eat meat/eggs/fish in their natural state, and eat your carbs with butter or another healthy oil, then you'll end up about the right place.

Just avoid really lean meats -- e.g. chicken breast, white fish.  Instead eat chicken legs, salmon, beef, pork (bacon!), organ meats, ribs, etc.

You can also use cream liberally in cooking.

Blogger at http://perfecthealthdiet.com<. 17-year chronic illness cured with diet and antibioticsi, nearly fully recovered.

Paul & PaulJ this is a great

Paul & PaulJ this is a great discussion. Shame your screen-names are so similar! And a shame this discussion is in a blog and will soon be lost.

I totally agree with PaulJ's comments. Its all about numbers. Kill rate versus replication rate. And the whole thing will be governed by how healthy you are (and therefore how functional your immunei system is, and how much cpni-kill you can endure).

The "protocolsi" are pretty useless in that regard. Cpn doesn't care if you are following the X, Y or Z protocol. All that matters are the numbers. You can follow the latest and greatest Z protocol, but if it isn't suited to your particular situation you will still end up a basket case.

> PaulJ: Whereas if you starve them, they won't reproduce, and over time your immune system and lysosomes and vitamin Di antimicrobial peptides and Flagyli will kill them, and you'll progress.

True, but as Paul said there are potential advantages to getting the bacteria to reproduce since it keeps them in the RB-state where they are vulnerable to abxi. It all depends what strategy you are employing. And a-priori there is no obvious reason to choose one strategy over another.

>PaulJ: In my case, a 15% carb 70% fat diet, vitamin D, and NACi was enough to clear CPn from insulin-dependent cells like muscle. I needed antibiotics for the brain/nerves/immune cells. It was very hard for the first month especially, but over a period of a year I improved steadily.

I'm onboard with the 15% carb. But 70% fat??? How do you manage that?

>PaulJ: antibiotics do not totally prevent reproduction, they just reduce the rate

I wish more people here appreciated that fact!

>PaulJ: Curing your self is all about getting the kill rate of your immune system above the bacteria's reproduction rate

Precisely! Which is why the immune system is key. This makes a mockery of the "protocols" since they don't take into account the vastly different immunocompetence of patients.

Hunter: Don't think - experiment

Jeanne, antibioticsi do not

Jeanne, antibioticsi do not totally prevent reproduction, they just reduce the rate.  Yes, you should be doing other things to reduce its reproduction rate, like low-carb dieting.  Curing your self is all about getting the kill rate of your immunei system above the bacteria's reproduction rate.  Since bacteria can reproduce so fast -- many can double every 15 minutes with unlimited nutrients, meaning with no nutrient limitations the bacterial population can grow a million-fold in 24 hours -- this is really the key.  However good your immune system is, you can't give bacteria a rich nutritional environment and expect to beat the infection.

Maximizing kill rates with vitamin Di, NACi, etc. is also important and will bring a faster recovery, but I believe the key is restricting nutrient availability to the bacteria.  It's as important or more important than antibiotics.

Try eating lots of eggs, meat, fish, dairy, and vegetables, plus up to 2 portions of fruit/berries per day and some potatoes/rice, just enough to feel OK, but no wheat products or cereals.

Blogger at http://perfecthealthdiet.com<. 17-year chronic illness cured with diet and antibioticsi, nearly fully recovered.

Jeanne, Dr S. and I have

Jeanne,

Dr S. and I have discussed this a bit and truthfully there is no definitive answer IMOi. I am reasonably sure that Cpni can replicate at a lower level even when people are taking antibiotics after a couple of weeks of exposure. During those two weeks surviving Cpn create enough efflux pump proteins to eradicate the antibiotic(s). However this uses a lot of metabolic energy so their growth is probably drastically curtailed.

Anyway as I see it the problem is the less energy you provide Cpn the more likely they will die but the greater the side effects. Conversely the more energy you give them, the more likely they are to thrive but the less side effects you will experience. Anyway I think moderation is probably the best idea.

- Paul

Hi Paul,I'd certainly be

Hi Paul,

I'd certainly be curious to learn about the mechanisms of some of those things -- caffeine for instance.  If you believe NO is important, have you tried arginine supplementation?

Paul

Blogger at http://perfecthealthdiet.com<. 17-year chronic illness cured with diet and antibioticsi, nearly fully recovered.

Hi Jeanne, I agree with

Hi Jeanne,

I agree with PaulJ and think that I can speak for Dr. S. on this and say that he would agree that a high carb diet or even worse one with a lot sugars, would be negative if one were not taking antibiotics. With antibiotics probably this is not so much of an issue and even arguably might be a good idea.

PaulJ,

On the niacini discussion, I hope my earlier response did not seem too positive. I do think it helps to kill chlamydia and I think it does so by helping to increase the production of intracellulari nitric oxide.

My position on the best adjuvants for Cpni therapy is that at the end of the day every successful approach will eventually involve inducing Cpn into the EBi state which will lead to the eradication of Cpn in the cell or apoptosisi and the eradication of the Cpn in a WBC or another cell. There are many adjuvants that can help accomplish this and our favorite at this time is caffeine as we think it only acts on the Cpn for a few minutes.

Other agents stress chlamydia for various amounts of time. For example INHi probably stresses it by inducing its efflux mechanism and only does so for a fairly short period of time as it has a short 1 hour half life. Metro and tinii have longer half lives and probably cause Cpn to attempt to pump them out for prolonged periods of time. This uses up the cell's ATP and may induce secondary porphyria and also induce production of HSPi-60 which recruits WBC's to the area which may further induce problems as they secrete interleukins that induce NO production.

Niacin appears to work very differently. It seems to induce NO production. Since this appears to be a for a brief time that might make it an excellent drug. However I suspect that only the flush from a large amount of NO release lasts a short time but that it helps induce NO production at some level for some time. If that is the case the side effects would probably greatly exceed the benefits.

- Paul

Hi Jeanne, you're right I'm

Hi Jeanne, you're right I'm not a doctor and my only clinical experience is in my own case, but I am a scientist, my wife is a biomedical scientist on the faculty of a famous medical school, and I know a bit of biology. 

As for articles, I should probably write one, because it seems that only a few pioneers like Drs. Stratton & Wheldon are really working on these chronic bacterial infectionsi and I think they have overlooked some of the interactions of diet with the disease and also I'm not sure they have gotten everything right about the molecular/cellular biology.

One thing to keep in mind is that CPni isn't solely dependent on stolen ATP for energy -- it can metabolize at least pyruvate and lactate and glycogen itself, and maybe glucose too with the aid of some cellular molecules.  So it can still generate energy itself even without grabbing ATP from mitochondria.  And trying to grab ATP from mitochondria must be a risky activity, because it exposes proteins to lysosomes and the immunei system.  Whereas it can execute a fermentation pathway while hiding in endosomes and keeping a quiet protein profile.

And whenever CPn grabs enough energy, it reproduces.  The goal in life of these bacteria is to divide and reproduce.  They're simple creatures.

And the more CPn bacteria you have in your cells, the more toxic waste they generate, the more they deprive the cell of its own nutrients, the worse your symptoms.  And when you do kill them, the higher the pathogen load, the more bacteria die, the more toxins they release.

So, how big is your Herxheimer/porphyria toxin load?  It's roughly proportional to the number of CPn bacteria times the rate at which you're killing them.  If your antibioticsi/Flagyli/NACi/vitamin Di etc. are working well you're killing a lot, but if you're letting them reproduce, then you may be creating new ones just as fast.

So, suppose you have a trillion bacteria in your body, they double once a day, and you are killing off a trillion a day -- then you have die-off toxins from a trillion bacteria every day, and your disease is stable (neither progressing nor regressing) with a pathogen load of 1 trillion bacteria on average. 

But if your bacteria are only able to reproduce for 10% growth per day, and you can still kill 50% in a day, then the pathogen load is decling 40% per day and your trillion bacteria becomes 100 billion in a week, 10 billion in two weeks, 1 billion in three weeks -- and now you are only killing 500 million per day and your die-off toxins are only coming from 1/1000 as many bacteria as they did a month earlier.

So, in general, the key to defeating bacterial infections is to prevent them from reproducing.  You do this by depriving them of food. 

The trouble with the high-carb diet is that it elevates blood glucose and insulin.  This means that glucose is getting pushed into the brain (which takes in an amount of glucose proportional to blood glucose levels) and into most of the cells of your body (due to insulin). All of a sudden CPn all over has more food to support reproduction.

Of course this makes you feel better, because the CPn has been stealing pyruvate & lactate from your brain, leaving neurons starved.  Add more glucose, the neurons are more normal and you feel better.  Unfortunately the bacteria also feel better and reproduce.  After they've doubled in number, you feel worse.

On the other hand, if you deprive them of fuel, reduce their rate of reproduction, kill enough off, then the pathogen load gradually declines.  So the low carb diet feels worse right away, but it makes you feel better later, because you have fewer bacteria around and fewer die-off toxins.

So you see, if you give them glucose and niacin">i -- the two things they need to run their fermentation pathway -- then there will be some CPn somewhere that aren't sufficiently disabled by the antibiotics that they can feed and reproduce.  And you're increasing your pathogen load and worsening your disease.

Whereas if you starve them, they won't reproduce, and over time your immune system and lysosomes and vitamin D antimicrobial peptides and Flagyl will kill them, and you'll progress.

In my case, a 15% carb 70% fat diet, vitamin D, and NAC was enough to clear CPn from insulin-dependent cells like muscle.  I needed antibiotics for the brain/nerves/immune cells.  It was very hard for the first month especially, but over a period of a year I improved steadily.

I don't know how bad others' experience of porphyria is, but in my case, the disease itself was sufficiently debilitating I would take any temporary porphyria that didn't kill me in exchange for a cure. 

Blogger at http://perfecthealthdiet.com<. 17-year chronic illness cured with diet and antibioticsi, nearly fully recovered.

Wow, Paul and Paul J., this

Wow, Paul and Paul J., this is all very interesting and may explain why it took me so long to reach a tipping point toward my, "path to wellness".    Initially, the ABXi hit me hard... it  took me several months to just titrate to the doxyi and azith.  I was pretty much housebound and this actually put me in a transport chair for a while .  It wasn't until April of this year (2009) that I reached a point where I no longer felt constantly toxic.

So the whole time I was eating carbs and drinking Gatorade to  feel better, I was only feeding the CPNi and causing more to grow? or Paul you're saying this isn't the case if one is taking antibiotics? (and this was probably just die off/toxins?)  

Thanks for taking the time to input.

JeanneRoz

 

JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi<; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

Facinating info there PaulJ.

Facinating info there PaulJ. I think it fits well with my progression. When I took my notable turn for the worse, I was doing a cyclical low-carb diet (low carb during the week, high carb on the weekends). Additionally, I was taking a few things that probably encouraged/activated/fed the bacteria (caffeine+ephedrine). To make matters worse, when I started feeling considerably worse, I quit eating the way I had been, moving to high carb, low quality "crap" and stopped working out daily and intensely as I had been for the year prior. Also, I tended to drink my problems away too.

 

I suspect alcohol generally and beer specifically also feed the bugs.

I started a CAPi in October, recently gave up the beer. Low-carb has always worked well for me in weightloss, and I generally felt a lot better after the first week or two. That's my next step, right after the holiday's. ;)

CAPi started 10/09 - Doxyi 200mg, Azith 250 MWF, 1 Flagyli pulse. Empirical CAP on suspicion of CPni or tick-borne infection. Primary symptoms are chronic sore throat, muscle pain (jaw, neck, trapezius, all on right side), rosaceai, joint pain.

Thanks Jeanne, always nice

Thanks Jeanne, always nice to get feedback.  I have to say that vitamin Di is critical and should be taken ahead of NACi or any other vitaminsi.  Of course if die-off is so rapid as to be highly toxic one should back off temporarily, but I do believe vitamin D is critical.  Low vitamin D levels are highly associated with multiple sclerosis as well as with respiratory illness (which C. pneumoniae of course is associated with).

A low carbohydrate diet might briefly contribute to a porphyriai, but overall it will reduce bacterial reproduction, reduce overall pathogen load, and over time (within a few weeks to a month) greatly reduce die-off symptoms such as porphyria.  Moreover, die-off and brain-hypoglycemia symptoms can be managed by eating just enough starchy foods (e.g. potatoes) to make the symptoms tolerable, and gradually reducing carb consumption as health improves.  The Stratton/Mitchell diet recommendations for secondary porphyriai (70% carb 30% protein) are understandable for a porphyria that is a transient 2-3 day condition but are disastrous for any bacterial disease if maintained over any long period of time.  Such a diet will cause the bacteria to multiply, especially in the brain where the glucose concentration is determined by a concentration gradient and thus is proportional to blood glucose levels.  Over any significant length of time (>1 month) a high-carb diet will increase pathogen load and increase the porphyria severity.  I think they have borrowed this recommendation from other types of secondary porphyria and haven't thoroughly thought through that diet recommendation in the case of a chronic disease like CPni.  I hope no one here is eating a 70% carb low-fat diet, if so it's no wonder so many are in such difficulty.

As for niacin">i, I think the sceince is unsettled at this point.  The testimonies of people here are certainly a point in its favor.  Nevertheless my own experience is highly negative with it, although now that I am on antibioticsi maybe it's no longer so bad.  I am resuming experiments with it.  I think if you have any bacterial disease it's important to be on antibiotics before considering niacin supplementation.  NAD+ concentration (which is directly dependent on niacin availability) is normally the main bottleneck of bacterial metabolism, so unless you create another bottleneck by antibiotics, niacin supplementation is likely to make the disease worse.  Of course a niacin deficiency can be deadly for humans (pellagra), so you have to find a balance. 

 

 

 

Blogger at http://perfecthealthdiet.com<. 17-year chronic illness cured with diet and antibioticsi, nearly fully recovered.

PaulJ,  I am always open to

PaulJ,  I am always open to learning... can you point me to some articles, studies or references that explain this for which you base your statement below?  My porphyriai usually crept up on me (and still does) when I was not diligent with my moppers/supplementsi and definitely lasted longer than 2-3 days.  So your saying I increased my porphyia by eating too many carbs? They definitely helped me feel better. 

[And, of course, I hold you to the disclaimer that you are not a doctor, and any medical advice you give..... yadayada.....Wink]

"The Stratton/Mitchell diet recommendations for secondary porphyriai<i< (70% carb 30% protein) are understandable for a porphyria that is a transient 2-3 day condition but are disastrous for any bacterial disease if maintained over any long period of time.  Such a diet will cause the bacteria to multiply, especially in the brain where the glucose concentration is determined by a concentration gradient and thus is proportional to blood glucose levels.  Over any significant length of time (>1 month) a high-carb diet will increase pathogen load and increase the porphyria severity."

Thanks,

JeanneRoz

JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi<; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

It was very scary with my

It was very scary with my fever spiking really high.  I also had neuropathy (for the first tie in my life) in my limbs and joint pain. However, when I went on the abxi last time I ramped up to 2x/day over 6 weeks pretty quickly. 

 Your signature indicates possible for Lyme,  I also had fever and chills early on in treatment and one month later was tested for Lyme and tested positive, had I been tested before the abxi I may well have tested negative but the dramatic die off kicked in an immunei response of which the fever was an indicator.   When I discussed fever here it was suggested to me that it was likely related to the Bb (Lyme bacteria) die off more specifically.

It sounds like you have done your homework and have an understanding of CPni CAPi.  Welcome and please check in as your treatment progresses!

Louise

 

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

You guys are amazing!

You guys are amazing!  Thanks so much for all of the advice and encouragement.  

I have taken the supplementsi on the Wheldon list religiously for about 2 years with a few exceptions like vit D. My vit D level is midway in the range (I will look into adding this).   I have spent the last two years trying to fight this naturally by improving my immunei system, balancing my hormones –thyroid and adrenals, focusing on nutrition and trying herbal remedies.  

The blood tests show that my immune system is gradually and slowly building (even my natural killer cells) which were really low when I started.   With all of my effort, I continue to feel worse and my titers went down and now are back up again.  I guess the number of immune cells are increasing, but probably the little cpns are in each one of them.   So, my doctor has suggested abxi again and when I try CAPi again, I want to do it right.  

When I tried the abxi before, I did try the Vitamin C and the charcoal. I also did the B-12 shots for the porphyrins.   These efforts did nothing.  It was very scary with my fever spiking really high. I also had neuropathy (for the first time in my life) in my limbs and joint pain. However, when I went on the abx last time I ramped up to 2x/ day over 6 weeks pretty quickly.  So this time I will go slower. 

Due to the reaction I was getting on partial CAP before, my husband and I are thinking of delaying abx treatment until next fall when my youngest goes to Kindergarten.  We are nervous about this because I have read about the toxins that the cryptic cpns emit and the damage they can cause without treatment.  I have Dr. Stn's contact now so I will try to get my doc to use it.  Otherwise I might try Dr. P.

Thanks again for the help! 

First dxi'd in 89: CFSi & Fibro.  Recent dx'd 10/07 pos for Cpni, Myco; neg but poss for Lyme, EBVi, HHV-6A. Currently: supp list, Glutathione/ATP shots, Transfer Factor, iron, cortisol, T3, Diflucan. 1st try CAPi 10/07; prep for 2nd try

The diagnosis needed to be

The diagnosis needed to be considered for treatment at the Vanderbilt Center is MSi, CFSi and Fibro are not admitted there.

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

YoungMom, As Jim says, you

YoungMom,

As Jim says, you have to start with protein synthesis inhibitors ASAP, as much as you can tolerate. This is the key first step.

Other things to do from the start are:  (1) Vitamin D3, 3000-5000 IU per day, plus some vitamin K2; (2) reduce the carbohydrates in your diet to ~400 per day.  You must eat a high-fat, limited carb diet to deprive the bacteria of glucose which drives their metabolism.  Also, do not take any niacin">i or niacinamide supplementsi, these will also enhance CPni metabolism & reproduction.  If you get bad side effects on 400 calories/day carbs, e.g. cognitive symptoms of hypoglycemia or fungal infectionsi, then find the minimum carb level you have to eat to avoid these, and gradually reduce carb intake as you are able.  (3) Vitamin C, 2 gm per day.

Ramp up the antibioticsi and NACi as soon as you can tolerate them.

Blogger at http://perfecthealthdiet.com<. 17-year chronic illness cured with diet and antibioticsi, nearly fully recovered.

PaulJ....  If I may, I have

PaulJ....  If I may, I have a bit of a concern for YoungMom, in that, if she is affected by just 1, 600 mg NACi tablet -----  3-5000 IU of Vit D3 may be a bit much to start out with as Vit D can cause die-off.  Just my  input on the side of caution.

Also, a low carbohydrate diet  can contribute to porphyriai (have you read this link<    Excerpted from: "THERAPY OF CHRONIC CHLAMYDIAL INFECTIONSi INCLUDING THEIR ASSOCIATED PORPHYRIA AND VITAMIN B12 DEFICIENCY: SEVENTH VERSION" Charles W. Stratton, MD William M. Mitchell, MD PhD Vanderbilt University School of Medicine Nashville, Tennessee 37232

PaulJ you may also wish to to re-read about Niacin">i/niacinamide supplementsi here as it is a recommended adjunct< and many of us here do use it.

Niacini< & Cpni< Simple: (from Jim K.)

  1. Cpn disturbs niacin metabolism. 
  2. This results in  impaired T-cell function, low melatonin">i<i<, low serotonin, low tryptophan, low niacin, all of which are problems for us (depression, insomnia, immunei<i< problems, etc.)
  3. Niacin also counters endotoxini< reactions (cold hands and feet, low body temperature, etc)
  4. You have to use regular niacin, which causes a flushing reaction (I get itchy too), and have to ramp up gradually, and you will tolerate higher dosage as you build.
  5. Gear towards 500-1000 mg per day spread over the day.
  6. As it can be liver toxic in these larger doses, make sure your liver and CBC blood panels are checked regularly if you are using this supplement in this way. 

YoungMom, don't get frustrated ..... there's soo much to learn and some days it's difficult, especially when you are feeling terrible.  

As others recommended start by reading the tabs in the upper right-hand corner (Getting Started, CPN Handbook, etc.) 

JeanneRoz

 

JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi<; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

Did you try the Vanderbilt

Did you try the Vanderbilt Medical Center in Tennessee-Dr Sriram. He treats patients with cpni. With your cpn tests results I would think he would see you. Linda
If there is no wind..............row 12/26/2010 Presently not on any antibioticsi. Just supplementsi. Started new LLMD 12/09/2010. Will start (12/30/2010?)150 mg Doryx after several test are done.

YoungMom, you can't do

YoungMom, you can't do better than what Jim suggested.   Your own doctor and the best expert available.   There are a very few doctors out there prepared to treat patients with long term antibiotic protocolsi but to be quite honest only a small percentage of them have any experience with this protocol, except those treating MSi patients at Vanderbilt and a couple of others.   Most of us do not have the benefit of a willing doctor on our doorsteps, so I would milk that for all you can get.   Come here for help with reaction, questions about proceeding, what to take in terms of supplementsi, where to get them etc.   There is a wealth of information and experience here.

If you follow available links in the getting started module (tab at the top of the page) it will take you to a number of other pages that will help both your doctor and yourself with you treatment. (for example a one page information sheet for your doctor, what supplementsi to take, a possible schedule for your supplements, what reactions you might have and what helps.)

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

youngmom- your doctor should

youngmom- your doctor should know that Dr. Stratton at Vanderbilt is willing to consult by telephone with any physician treating Cpni. You may not have an expert doc treating you, but you can have the worlds expert consulting with your physician which ain't bad at all. You might find that Dr. Stratton advises a slightly different version of the CAPi given some ongoing research, but the key thing is you'll be getting better. Thtat better for your kids in the long run.

As others have said you will have to go gradually and use the moppers religiously. Your titer level does not tell you how bad the infection is (it's not a quantitative measure) but your reactions give a very accurate picture of how much Cpn you've got in your system. You've got to go after it or you'll only get sicker, but you have to do it gradually enough to manage the toxicity. 

My personal bias: start with the doxyi rather than the NACi. Why? Because the replicating RB's are what are sucking up all your energy, literally, sucking ATP energy right out of your infected cells. NAC is important for liver support and protection, but you can do that with Milk Thistle or Urso Forte. And killing EB'si won't lead to improvement of energy and organ function, nor will it bring down the load of porphyrins being produced by infected cells. So, while we recommend starting there as the safest option for many, if you are being monitored by a physician who can prescribe other things like Urso Forte and watch for liver toxicity, this is not so critical.

Look up Dr. Stratton's number on the Vanderbilt faculty listing and ask your physician to call him for a consult on your treatment. They will find it tremendously helpful and informative.

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Hi Youngmom, my situation

Hi Youngmom, my situation was little similar. I am single mom to a very busy girl, 3 dogs, cat and had to take the protocol slow so that I could cont to work. I woud suggest that you maybe start with 300mg of NACi a day, or every other day, until you build up 2400 mg a day with little or no reaction. it may take a month or two, but that is OK.  then add doxyi 100mg daily until tolerated and then add 100mg..

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.

youngmom,   Maybe this

youngmom,

   Maybe this will be helpful.  Three good indicators you mentioned, NACi reaction, elevated Cpni antibodies and antibiotic reaction are strong hints of an active Cpn infection.  As mentioned above starting the supplementsi to help the immunei system do its work seems like the first process. 

   What lab did you use for the Cpn antibody test?  Did they test for three antibodies of Cpn; IgGi, IgA and IgM?

   Have you had a Vitamin Di-3 blood test?  Try to get this level to the upper range if you can.  I take 10,000 IU / day, maybe start at 5000 IU / day of D-3, it will take several months to see the increase in a blood test. 

   Below are the blood tests I use for the Chlamydia panel and Vitamin D3, they work very well for me and others it seems too.  You can print these out as labs can cross them to other labs if needed and many ship blood to other locations as needed.  It seems Cpn is at least part of the issue with you and you are getting close to the answer, I wish you well.

http://www.questdiagnostics.com/hcp/testmenu/jsp/showTestMenu.jsp?fn=902068.html&labCode=QSO<

http://www.questdiagnostics.com/hcp/testmenu/jsp/showTestMenu.jsp?fn=7821.html&labCode=QSO<

 

Cpni, Mycoplasma, Chronic EBVi, M.S.(MRI, Spinal Tap-greater than 5 oligoclonal bands and VEP), PANDAS(OCD). Wheldon CAPi (started 12/08), Azithromycin/Clarithromycin(12/09), Lithium, Lamictal, NACi(2.4g/day), D3(15,000IU/day)

Welcome YoungMomYou know you

Welcome YoungMom

You know you have the bug and you have a doctor willing to prescribe for you.  You are miles ahead of many.

That is the first of my two comments.  The second is to get the supplementsi and take them.  This is not an easy road for any of us and for you it will take some thought and preparation.  Read the Getting Started, begin the supplementsi, and don't worry so much about starting the abxi for a month or two.  The supps will help your body get ready for the real work.    You can stay with one NACi for a while - push it up when your tolerance is higher.

Rica

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

YoungMom,I know you are

YoungMom,

I know you are going through a tough time trying to understand all the information on CPNi.  The fact you found a doctor who even checked the box for lab testingi for CPN is a good start. This web site has all you need to help you and your doctor get started. Try starting with the supplementss and take it one step at a time.

The good news is many here have gotten better and their is a treatment.

Please keep us in mind with any questions you may have, Smileas we are here to help.

started Wheldon capi 4/21/08 for Cpni, CMV, EBVi, CFSi. Cap hold 4/09vascultis. Restart 9/09 with Dr.Powell, restore gut, 4000 D3, supplementsi,  Pos. Bartonella and Babesia, Rifampin 600 mgs and Biaxon 1 gram. 

Hello YoungMom and

Hello YoungMom and welcome,

With your situation, it appears you may have to take this treatment very slowly.  My doctor had never treated CPNi but knew it was insidious to get rid of.  I have been on the protocol now for 2 1/2 years.  He's learned along with me.   The fact that you HAVE a doctor willing to treat you is the first step.... there are so many doctors who will not prescribe long-term antibioticsi.

Everyone's body and bacterial load is different. The fact you have 3 small children may make this  journey a bit more difficult for you.  Slow and steady is better, but the important thing is to be consistent within your ability to tolerate the treatment and not push yourself too hard, too fast. 

It took me about 2 months before I was able to even tolerate 100 mg of Doxyi BIDi. (You can start out with just 100 mg/ day and work up to 200 mg per day).  It was then a couple of months more before I was able to add the Azith and I started that at 1/2 tablet.    I  was not able to tolerate my first pulse for almost a year and a half into treatment.  This was just me, others have gone faster (and slower). 

One of the most imporant factors in this treatment (that I learned the hard way) is being sure to take the supplementsi and "moppers" (as we call them) to help get the toxins out of your body and assist cell rebuilding.  

CPN is a bacteria that causes many problems if it is left untreated in the body (of which CFIDSi and FM are two now believed to be secondary to CPN infection).  Do you know if you have any other co-infectionsi or viruses (such as EBVi or HHV-6?) or even Lyme? 

I don't have a doctor recommendation (other than perhaps Dr. P. in California) but do suggest you read as much as you can about the treatment, supplementsi and other's posts.

Most of us have been where you are, so don't hesitate to ask questions.... there are many different levels of experience and knowledge here.... (so don't let the more scientific conversations  that go on here inhibit asking anything!  You'll eventually understand what's being discussed the longer you are on here.)

 I'm sorry you've had to join the ranks of we CAPi'ers but knowing that you have CPN is the start of getting better!  This site is a wealth of information and there are many knowledgeable and helpful people here.

JeanneRoz 

 

 

 

 

 

 

JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi<; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni