Cpn treatment for Chronic fatigue - 1 year in

I have been on CPNi treatment for Chronic Fatigue for over a year now, and have been very bad at keeping tabs on this forum. I have done really well until the last month or so, but I really just followed the protocol, and stuck on a relatively low sugar diet, which seemed to help me in the past. Right now I am struggling a little, and realizing that I need to keep better tabs on the forum: to receive your collective help and help others too. I struggle to keep up with my email and so stopped getting the automatic messages. In fact I mostly struggle to keep up with my life in general - I have a family and am the sole breadwinner - somehow I've managed to keep up with a fairly demanding job, but it's very challenging. Basically I don't do much other than work, rest and spend less time than I'd like with my kids - my wife takes great care of our family. But I am really ready to be free of the Cpn.

This is my story. I have had chronic fatigue for over 20 years. I had an infection and really overdid it, going for a long run, when I was 18 years old. After that I was severely ill, and have had intermittent problems since then - essentially being tired with a relapsing/remitting pattern, sometimes so tired that its hard to do my work, other times tired but managing OK. I got a degree from a good school/university and managed to work and support my family for the last 20 years, but on and off have really struggled at times. I had a breakdown when I was at college - largely because I forced myself to keep going when I shouldn't have done so, but I managed to pick up the pieces and finsih my degree, as well as a PhD. Somehow in the midst of it all I managed to settle down, get married, move to another country (I moved from England to the USA) and have a reasonable career.

I came across this forum a while ago, but started getting serious about the treatment a year ago, when I was so ill that I was thinking about giving up work. This would have been a disaster for my family - my wife hasn't worked for a decade, we have 4 kids and no family near where we live. Fortunately I managed to get some help before I had to do that - both through this forum and by finding a Lyme specialist who was willing to treat me.

I went on NACi and initially had a pretty strong reaction, actually developing a fever initially when the dose was high. Then I started a Whelden based antibiotic schedule, initially without pulses - but after a while adding the pulses (first Metronidazolei and then Tinidazole). I never had really strong reactions to the pulses, but did at times feel a little worse on them. I got a lot better in the first year, and did a ton of stuff that maybe I shouldn't have - moving house (to a much needed bigger place). In general I felt much better - and was doing well, until about a month or so ago - when I started getting more tired, and really bad aching joings - especially knees and ankles and bad asthmai - which always follows the tiredness these days. So currently I am back to struggling through life for a time.

My Cpn diagnosis is not as clear cut as some on this forum this is my diagnosis:
-Positive IgG test - 20x above reference range, but not significantly raised IgA test
-Strong reaction to NAC
-Bad asthma when I am tired
-Not too strong a reaction to pulsed Metronidazole or Tinidazole
-Seem to be helped by a ketogenic diet - I shared some posts on that when I was first around

Sometimes I wonder if I have a cocktail of infectionsi - my doctor (who is a Lyme doctor) thinks I have Lyme too - but those tests are more controversial.

I know that I am more fortunate than many on this forum - my form of CFSi is much less bad than what many folks go through and much less bad than MS. I am tremendously thankful for your collective help as it seems to have already made a real difference to me.

Comments

Hi JRGreat to hear your

Hi JR

Great to hear your experiences - they sound very similar to mine and we're both fans of the Perfect Health Diet.  I'm 29 and have had some form of (undiagnosed) CFSi for nine years now, which I first thought was depression/anxiety and all neurotransmitter-related and convinced doctors to put me on antidepressants.  It wasn't until after years of worsening health which has robbed me of my twenties that I discovered Paul Jaminet and the cause of my problems: a systemic infection.  

I've just read some of your previous posts on the ketogenic diet - how that's going for you? Again, like you, I tried a ketogenic diet about two years ago when my brain fog and fatigue were so bad I felt like giving up work, or at least going part time, would be the only option.  It worked, stabilising my energy levels to the point that I could at least go to work, and do the basics at home.  However, it's by no means a cure-all, especially as I sometimes find it difficult to get into ketosis and end up being in some low-carb, but non-keto state (probably with high fasting blood sugar) which is neither comfortable nor good for starving bacteria.  Perhaps I need to up my MCT/coconut oil but even that sometimes doesn't seem to work.  Requires more experimentation...

My diet is pretty much all PHD/keto-PHD except for bone broth (which I make very occasionally, but nowhere near enough) and fermented foods which I tolerate very poorly, most likely due to histamine, although I can't be sure as I tolerate aged cheese ok.  Wine is a major no-go if I want to enjoy my evening.  It’s a shame I can’t do fermented foods because, as Paul J says, they’re the only way of significantly altering the gut microbiome, short of an FMT.  I’m going to try small amounts of kefir (from Whole Foods) and take extra vit C to see if it helps to destroy excess histamine.

I first started the CAPi around 18 months ago, no thanks to a doctor - I'm DIYing it as no one is likely to test long term antibiotic treatment on a patient whose blood tests show nothing wrong, here in the UK (even a private, non-NHS, infectious disease specialist said CPNi was "very unlikely to be the cause of your symptoms").  I noticed improvements immediately and then worsening symptoms as die-off increased.  I'd also had a bad reaction to NACi before that: not the widely-reported fever but a very unpleasant feeling of inflammationi all over my body, worsening tremors in my right-hand fingers, and worse brain fog, fatigue and muscle twitching.  I stopped the CAP after four months, including a few pulses of Tinii, and felt pretty good for about two months and then started to feel more tired and noticed more reactions to food.  This worsened until it eventually dawned on me that the CPN was back. How naive I was to think that I'd defeated it... 

I re-started three weeks ago and I'm in it for the long haul now.

I've just given you a summary of my experiences, assuming this would be helpful or at least of interest to you.  Now I've written it, I'm wondering whether this might have made a better blog post than quick response!

Anyway, wishing you the best.  Glad to hear of another person with similar symptoms trying similar remedies.  At least we're not alone.  This site is immensely useful and, like you, I'm very grateful to those who started it and to everyone who posts information and messages of encouragement.

Thanks Hameldon!

Thanks for sharing... I roughly follow the perfect health diet - but I am not sure how ketogenic I really am. On the carb front I am probably not as rigorous as Paul would recommend - but I typically don't eat carbs for lunch or breakfast and have something rice based for dinner (probably more than the 1/3 of a plate of rice I think he recommends). Now I am on antibioticsi I occasionally allo myself some chocolate too. The ketogenic stuff does seem to help me get through a working day. I actually take lots of the medium chain fatty acids Paul recommends to help you generate Ketones. I buy it from the 'bullet proof' website - but its expensive (I use the brain octane they sell - which is refined coconut oil - but I think you should be able to find something similar from health food stores in the UK). Its also pretty hard to get used to - I usually mix it into soup at work. I keep it up because it did definately help me, and becasue I am pretty sure I have a Cpni colony in my GI tract - at least I have had chronic inflammationi there over many years which changed significantly when I changed my diet (see https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3993372/ for some details on how Chlamidia species colonize the gut - I am not sure that it has been proven Cpn does yet but certainly related species do and certainly I have had severe localized inflammation that would be consistent with such a scenario).

With regards to CAPi I think you need to stick at it for at least a year - probably longer in my case as I've had this thing for nearly 20 years. Also if you want to find a doctor perhaps look for a Lyme specialist - there seem to be quite a few around now - they may be more open to helping you with a long term antibiotic course. DIYing is also OK - but I found that the Lyme doctor I am seeing had a much bigger array of blood tests than the standard ones we are both probably familiar with and which is a GPs first and last port of call.

I hope you start to feel better. I have realized over many years that the medical establishment is largely not going to help you - you need to find a doctor somewhat on the fringe - who is willing to listen to you, believe you and apply the scientific method to your case. I have a relatively good doctor now - which is a big step forward for me.

Yes I'm pretty sure CPni, or

Yes I'm pretty sure CPni, or pathogen of some sort, has infected my gut - I'm very bloated all the time and it's especially bad after eating starches.  I'm guessing though, as it's an intracellulari bacteria, that it's not a normal gut infection but an infection of the epithelial cells of the gut lining.  

I've also had plenty of Bulletproof MCT oil and coconut oil over the past two years but, as PaulJ notes, these fats are absorbed in the small intestine so are unlikely to have much affect on the large intestine...

Thanks for the article on CPn gut infectionsi - when I have more mental energy (not this evening), I'll have a look.

"these fats are absorbed in

"these fats are absorbed in the small intestine so are unlikely to have much affect on the large intestine..."

Just to clarify, eating these fats helps me eat less starch, which I hope helps to starve the bacteria in my large intestine. But maybe I should try to go more ketogenic... I probably eat too much rice... It's do hard to eat a lot of fat, meat now is usually sold without it.

JR, I've done the cpni

JR, I've done the cpni protocol successfully.  BUT, when my doctor ran a blood test last year, we found my DHEAi and B12 levels were very, very low.  Supplementing with both of those has made a world of difference in my energy level and my ability to concentrate.  Now might be a good time for you to check the 'rest' of your health and see if it can be fixed with supplementsi.

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

Thanks MacKintosh

I think I am still fighting Cpni - in part because I get run down and get bad ashtma simultaneously (currently my state). My doctor is super thorough though - so she should be pretty willing to have me do blood tests for these things so I'll mention it when I see her next week - thanks for flagging this. For me I think it might take a little longer than a year to clear this thing out and to begin with I did not do pulses of tinii/metronidazole as I needed to persuade my doctor to focus on Cpn rather than Lyme. I guess I just need to persevere and accept that things will go up and down a little on the treatment.

Actually I just had some blood tests run and a few things were flagged:

AST (SGOT) and ALT (SGPT) - both slightly higher than reference - somewhat indiciative of liver issues - perhaps not surprising given antibiotic use.

and a high Lymph cell count (4.5k/mm^3) - I guess indiciative of active infection.

I am not sure she did any tests for B12 - but I supplement that (together with Methyl folate">i) due to having tested positive for the MTHFR mutation - so I should be OK. DHEAi I am not sure about, I always felt I was on the verge of hormonal problems - so I should probably consider being tested for that.

I think there is validity to

I think there is validity to the idea that some of us have a cocktail of infectionsi 

If your immunity is weak it seems like it's a free for all for whatever bug wants to set up house 

DAILY:  NACi 2400MG , DHEAi sublingual , vit D3 , multi vits,./ Three times  a week: B12 injections (Hydroxycobalamin). Deer antler./  Once every few months methyl B12 Methyl injections