Very interesting! I'm not depressed, I'm actually really sick. Really.

I've just finished a seven-day course of Flagyli, and - after warnings from both the doctor and pharmacist to stay away from alcohol - Googled "Flagyl" and "alcohol" and came across this site. Didn't know ether was a virtual support group for chlamydia pneumoniae |(how do you explain that to the uninitiated? I've been asked "sexually transmitted, eh"?)

So this is rather exciting and quite interesting as well. My story is quite a bit like so many I've heard or read about.

I was super-fit and at gym one day - four years ago, almost exactly to the day - when I though "heavens, I can't go on!" It was like I had just run a marathon and over-exercised; aches and pains all over, and so-so tired. So I laid off gym for a week, then a month, then two months. To no avail. The aches and pains and tiredness and "brain fog" wouldn't go away.

Visit to a doctor; does the "usual" bloodtests, plus liver scan etc, and finds "nothing" wrong with me. Decides I have depression, then "perfectionism" (!) - which leads to high anxiety and heavens alone knows what else, see a shrink (I was told).

I was put on anti-depressants (Paxil), which made me ill and a little bit crazy, so I went cold turkey over the Christmas holidays.

A second and a third professional opinion; both agreed it was depression. (I'm stressed, yeah, but not that stressed, surely?)

A fourth doctor (specialist, apparently) discovered the fibromyalgiai "points" in my body, and also diagnosed chronic fatigue syndromei. Also prescribed anti-depressants (trepiline).

At about this time, a friend told me it was all in my head and nothing a good diet and exercise wouldn't cure (and my other half seemed to agree with him).

Then- I hope - a turning point. Another friend said she had been talking to a friend of hers, who had been diagnosed with depression years ago, but had gone to a new doctor, who said "actually, you have germs of all kinds in your body", and started treating her (pulsing, or something like that, right?) with antibioticsi; once a week for however many months.

 So after much ado and scepticism (by now thoroughly convinced 'it" was indeed in my head and maybe I was depressed), off I went. Tons and tons of blood tests, which found positive results for:

  • Mycoplasma pneumoniae IgG 
  • C pneumoniae IgA and IgG 
  • Toxoplasma gondii IgG as well as things called
  • Rickettsia Mooseri and
  • Rickettsia Conori
  • Oh, and something wrong with my thyroid as well. 
So, as the doctor said to me afterwards, "your friend is right - it is in your head. But also in your lungs, your heart, and every other bit of my body".

So I guess this is the site for me? 

I've just finished my second course of medication (my first visit to the Doc was a month ago, the second last week. How many more?), and feel awful.

I'm assuming this is because (as I found following a link from this site)

Antibiotic treatment, while often quickly removing the mental fogging and fatigue, may intensify the 'flu-like feelings. This may be because the dead bacteria are now exposed to the immunei system. And, as bacterial remnants are released from host-cells during cell replacement programmes, these 'flu-like episodes may occur for months and even years after the beginning of treatment. http://www.davidwheldon.co.uk/cfs.html<

So I'm going to lurk a bit, soak in the information on the site, and see where this all takes me. I hope on the road to health.

I certainly seem less fatigued and the brain fog seems to have abataed, but the aches and pains are still there; all over the place.

 But I'm not depressed, dammit (or at least I don't think I am - what is "depression" anyway?)

Comments

NDD, thanks for the link to

NDD, thanks for the link to Cecile Jadin's website.   It is always important for us to find another doctor who is prepared to take Cpni and other stealth infectionsi seriously and one in a country for which we have no names is even more precious.   She has a very good pedigree, she is indeed French and her father was a Professor at the Pasteur Institue in Paris.

Link. <

I think that doctors who do not encourage their patients to research their own condition are living in the past.   In the UK, the trend (even in the NHS) is to encourage the patients to take an active part in the management of their condition...

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

Thanks for the response; I

Thanks for the response; I see that my doctor - Dr Cecile Jadine (with some little dashes above the e and/or i in her first name) has been mentioned on this site and AFAIK she does the CAPi thing mentioned.

At least, I assume so. I have been on two seven day courses after the past two months, with four different sets of antibioticsi (two each month), plus a whole lot of other supporting medication (including Vitamin B and probiotics)

She has a FAQ here, if you haven't seen it: http://chronicfatiguesyndrome.co.za/faq<.

She even told me that most local doctors think she is a bit crazy (well, she is an artist as well - I mean she painst in oils, etc, and has this really strong French-like accent). And I was sceptical that first day. But when the bloodtests came back and I found I had all these "complementary" bacteria creating havoc in my body, I thought that maybe the other doctors are the crazy ones.

I also have the feeling that she is much more open to new ideas and suggestions than any other doctor I have been to see.

It was great to finally meet a professional who said she couldn't understand why other people would think "sick" people get a kick out of being "sick"; in her practice she has only ever met a handful of true hypochondriacs (I think she said four), and she has been doing this for ever (not only focusing on CFSi but also as a surgeon).

Mac, talk about "so much reading"; in the past four years - going from doctor to doctor - I'd make suggestions based on my own research, only to be consistently and constantly told "don't self-diagnose", don't use the Internet as a source of information, don't buy books on CFS or FM or "managing pain" (Dr Teitlebaum's works?) .... don't, don't don't; that's what we doctors are for.  Even my wife told me - and tells me - I spent too much time "reading up" on all of this and that my "reading" makes me sicker.

But Doc Jadine gave me a whole bunch of people to look up, including someone called Garth Nicolson, and said "read research and read, you'll understand this better if you do."

Before her, all those other doctors would say here's your Paxil, here's your trepilin, come back in six months if you're not better. Oh, your cholestral is too high; we need to treat that with anti-cholestral medication (Dr Jadine believes high levels of cholestral could be caused by the liver working overtime, and she tells me "I'll cure that with antibiotics").

The other one I'd have is your liver count is too high -- do you drink too much? But Doc Jadine reckons the liver thing is again caused by toxins from the bacteria, and not abuse of alcohol.

And yet all I get in those four years was anti-depressants, again and again. I'd say "now about my pain"... and they'd say "anti-depressants increase the level of seritonin and that will alleviate the pain". And they never did. I'd say "I've tried pain killers and all that seems to work is aspirin, why's that?"; and get no response.

I just wouldn't be listened to. One doctor even told me to go and see a shrink, but she thought I'd have problems with therapy because I would think I'd be far more clever than the person with the PhD.

Er, no, not really -- it was that I doubted I was "depressed" in the sense of what I thought depression was. (You know, feeling "down", but not "really" depressed in the sense of being suicidal, etc - although that has come plenty close in the last two years)

 Paron, you're right about being "tickled", to have a firm diagnosis of something at last left me quite stunned. Even tearful, I must admit. It was a bit like winning the lottery. Well, maybe not.

Three days after the second course and I feel like I am having hot flashes; a bit flu-like....

Four years and one month (I can almost virtually track it back to the day got "sick") later, and let's see where this part of the journey takes me.

I know I'll probably get all sorts of different answers, but any kind of "average" that I can look forward to when all this willstart making a difference? Doc Jadine said optimistically two weeks (no such luck), probably four months, maybe eight. Up to two years is the pessimistic side.

I think I have less brain fog and fatigue, or that that side is more "normal", but I must admit I have no idea what "normal" means after four years. :-(

Four years on and I am still not depressed. :-) A little tetchy, maybe, but NOT depressed. Thanks for the input. Any thoughts and advice will be appreciated, and shared with Doc Jadine (who is in now doing what doctors do at her clinic in Germany at the moment, I believe).

 

Hot flashes. Yes, tell me

Hot flashes. Yes, tell me about it, took quite a while for that to calm down and I still get them occasionally. Now you know what menopause feels like. Cool

Make sure you're taking all the moppers you can get down, it helps. Other than that just be pleased that you're saving on heating bills. LOL.

Re Docs knowing best.... I even told mine that a short course of abxi that he had given me for something else had hugely improved my weird symptoms. When I was dxi with MS I repeated the abxi evidence and it was dismissed. He still wouldn't support me on CAPi. He knows I'm on it but has never been in touch to see how it's going. No interest. And the Neuroi? He has several patients doing this but he plays Ostrich as soon as it's mentioned.

Berkshire, UK. Diagnosed RRMSi Feb 4th 2008.

NACi 2400mg. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April

Ooops duplicate post,

Ooops duplicate post, deleted.

Berkshire, UK. Diagnosed RRMSi Feb 4th 2008.

NACi 2400mg. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April

OMG, Mac! That is such a

OMG, Mac! That is such a perfect statement.Been there, been there. And to think we paid good money to see these people. Man, I really hate getting ripped off! Now that's depressing!

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

NDD, if the subject comes

NDD, if the subject comes up I just quickly say "CPni - it's the bacteria that causes pneumonia" and usually get either a blank stare or nodding heads (but no backing away from me at least!) Smile

Kelly

Diagnosed FMSi Feb '07.  2x/day: 600 mg NACi, 100 mg Doxyi, 500 mg Amoxicillini, 2000 iu Vit. D.  450 mg Valcyte.  250 mg Azi M/W/F.  500 mg 375 mg Flagyli pulses every 3-4 weeks.  Started CAPi June '07. 

NDD - 'Lucky' you! (Well,

NDD - 'Lucky' you! (Well, lucky to finally get an answer and probably luckier still to have found this site.)

I know you're new to this, but please, please, read the Getting Started section.  While I'm glad you got started on abxi, I'm concerned your protocol won't do the trick, in the end.  In the getting started section, you'll find the rationale for the minimum dosages and the fact that you need to be taking the antibiotics continuously and in tandem, in order to kill all the life phases of cpni, in particular.

The upside is, you found us.  The downside is, you have SO much reading to do now.

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

Oh, and 'depression' is

Oh, and 'depression' is going from doctor to doctor and being repeatedly misdiagnosed, to the point you want to throttle someone!  Wink

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 NDD and welcome.  As

Hi NDD and welcome.  As Groucho Marx said, "I wouldn't want to be a member of any club that would have me" or something close to that.  Wink

Reading your story sounds almost exactly like mine although I had to do alot more research on my own before finding anyone to take me seriously. 

As for depression, sure I was depressed.  Chronic illness caused it, not the other way around, and sometimes the treatment brings it back on, via secondary porphyriai.  But I quit seeing a psychiatrist and taking anti-depressants about a decade ago (have I been sick that long already?) since they had more side effects than good effects for me.  

I wish I knew 12 yrs ago what I know now.  Surely I'd be much weller than I am, but at least we are all here now, right?  Wink

BTW, I test higher for the Chlamydia T (past infection I never knew about) than the CPni but who cares?  I surely don't care if you told me I had Typhoid, just as long as there's something I can treat it with!

NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Supplementsi, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

Don't believe everything you think!  

ND,D: yes, you're in the

ND,D: yes, you're in the right shop. I was riding an hour a night when I just suddenly got sick on August 14, 2004 (long strings of heart palpitations that evening). After that, when I exerted myself, I got colder instead of warming up (and a lot of other changes, some measurable by blood test, but not officially associated with any specific condition, yet.)

Anyway, the CAPi dramatically improved my exertion tolerance. I lead a mostly-normal, if low-key, life now.

Discouragement isn't depression. (I was given Wellbutrin; did nothing whatsoever, of course, since I wasn't depressed.) Spending a year trying to convince people I was sick made me discouraged; not depressed. I was (am) blessed with a wife that never doubted that I was sick, even when I doubted it myself. It was still discouraging.

I was so tickled when test results confirming CPni and typical of CFSi came back positive! I'd much rather know the worst, if I have to.

 

Ron

On CAPi for CFSi starting 01/06 (NE Ohio, USA)

Began rifampin trial 1/14/09

Currently: on intermittent

And there is the what's

And there is the what's that comment and that is where it is good to have your response of choice ready.  I sometimes say that I would reallly like to share the details with them but it would take some time.  I have never had the curiosity seekers ask again, just my way of dealing with it.  Nothing spreads as fast as bad news. I have actually had people say to me that they would not have the patience for such extended treatment (like we have a choice here?) I guess we do, keep getting worse or try this and have a hope of getting better and at least not getting worse.  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 could just say it's

You could just say it's Cpni, few people have a clue. If they want to know more I usually say it's spread by coughs and sneezes not by doing fun stuff. If I really want to clear the area, I follow it with a cough. I have been known to clear an entire queue at the Chemists. Laughing

You have a great Doc there so hang onto him. Far too many just dimiss all this as rubbish.

Berkshire, UK. Diagnosed RRMSi Feb 4th 2008.

NACi 2400mg. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April

NDD,  I google

NDD,  I google Chamydophilia pneumoniae and thought that you would like to see the chart included halfway into the write-up.  Louise

http://en.wikipedia.org/wiki/Chlamydophila_pneumoniae<

 

  • 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
  • <

Welcome NDD, It has taken

Welcome NDD,

It has taken the same four years - with another half or so - for me to go the other way. With an attitude and a name like yours, you will get far!

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

"Persistent intracellulari

"Persistent intracellulari bacterial infectionsi, non-communicable".

I like that; thanks. You're right about people stepping back a bit!

 The problem with CFSi is that for many people it seems like such an airy-fairy term, and not something a six foot two man like me should be having.

I tried "endemic typhus" (because this is what rickettsia mooseri seems to point to?), and was immediately told "get away from me - typhoid fever is deadly!".

It's clear there is so little understood about any of this, and when you get bounced from doctor to doctor... well, you start losing faith in the medical profession, and start thinking that you are, indeed, nuts.

But now I have blood tests from pathologists, and at least I can curse real, actual fact "germs", and not my mind/spirit/whatever. Laughing

But I worry it's going to be a long road (mind you, it has taken me four years to get here, and there are no quick fixes, right?)

Welcome NDD, Yes I would

Welcome NDD, Yes I would agree this is the support site for you and me. 

Lots of information to soak in that is for sure.  How long have you been reading from the guest area?  Hope you find all the information helpful.  

Depression I don't buy it as a single dxi either.   Being dragged down and out by bacteria that is my perspective.  

You might try the term chlamydophila pneumoniae or maybe just chronic C.Pneumoniae to avoid the sexually transmitted stereotypical response. 

Or you could say persistent intracellulari bacterial infectionsi, non-communicable.  Of course anytime you mention bacteria you could get folks stepping back for a increased distance and then you can try to explain that it is not catchy etc etc etc.  

So I still like CFSi best because it so generic and at worst folks just think I a lazy woman.      Please let me know what you settle on, I could adopt it for generic use.  

Some folks I am sure will share their various takes on your questions.   Again, welcome to CPnhelp.org.    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
  • <