farandwide's blog

it's over

I've stopped the C.A.P., four days now.  It hasn't helped me at all, I'm only worse than I have ever been now.  So, I'll make a decision to make this stoppage permanent or not soon, though in my case, there's clearly no convincing reason to start again.  I've only declined so we'll see what stopping altogether will bring me.

 

Where things aren't

I've been following CAPi for 4 years, 5 months, and still have seen no significant improvements.  I've only gotten worse and worse and worse.

Consequently, this says to me that if I had a CPNi infection, I took care of it long ago.  I tested for it and the test results came back with "no antibody detected", completely negative.

However, that all being said, I still may be infected.  Not with Cpn but instead with the germ causing Lyme disease.  I tested for that too and it did not come back negative, though the titres were in the low reference range.

Chronicles of a Rifampinaut: pulse 42 begins

I meant to start this yesterday but having a bad memory to do it, I didn't start until this morning.  500mg of flagyli taken raw with my other abxi this morning...doxyi, rifampin, and amoxicillini.  That was following a teaspoon of Lauricidin which I took first and I chased the abxi down with 2000mg of vitamin C and NACi.

I'm somewhat surprised at having no adverse reactions to flagyl, at least that I could discern right away.  In the past, if I didn't enclose it in a gel capi, taking it was insanely unpleasant.  This time I took it raw with no gel cap and it didn't bother me, that I know of.

Okay, maybe not

Recently, I had an elliptical trainer assembled in my home so that I could theoretically begin using it and regaining my strength.  Problem is, it's so light that I'm worried about it falling over with my attempt to get on it.  I've learned not to take chances when falling is a likelihood, as it most certainly is and has become over the last two years.  I was intent on beginning the work to get my body back into shape, the shape where going up and down stairs is something I take for granted.  Well, it didn't go so well.

Chronicles of a Rifampinaut: Winding Down

Okay, I'm at a new stage of the treatment.  I was quite distraught with the test results that I got that stated "No Antibody Detected" for Chlamydia Pneumonia.  However, given how long I've been following the CAPi, it seems clear that I likely wiped the infection out.  I made the unfortunate mistake of not getting the Cpni IgGi and IgM tests during treatment and only getting it at the end which means I didn't see the levels in the process of knocking them down as I should have.  My  mistake, but I'll have to live with that and move on!

stuck in the mud with few options

As many of you may know, I recently had an IgGi, IgM, and IgA test for Cpni.  It came back undetectable.  The test results literally said "Antibody Not Detected". 

I also had an IgG and IgM test for MycoPlasma Pneumonia that came back with 3.33 for IgG, which is very high, but 2 for IgM which is very low.  Finally, I had an IgG and IgM test done for Lyme also which also came back as very low.  However, they didn't put  "Antibody Not Detected" on the results but instead put the low titer reference range down which is < or = 0.90.

Test Results

As some of you know, I got 3 tests done last week as a check to see where things "are at".  The results are this...

 

MycoPlasma Pneumonia - 2     IgGi, EIA

The test says that this is a positive result but does not differentiate between active or past infection.  Reference range is <770 U/mL

 

Lyme  - came back negative or under the detectable reference range of 0.90

 

Cpni -  came back negative orunder the detectable reference range of <1:64 for IgG

There is a note on the test says antibodies undetectable

 

So, not sure what to do about this.  I guess that in theory, it's good news but I also would like to be able to walk again and climb stairs.

4 years in and more questions

As many of you probably know, I tried using Caffeine as part of the CAPi between December '09 and March 2010.  I ended up going off of it about the middle of March due to problems walking that I didn't have before.  I've been working from home ever since, never having gone outside in the time in between then and now.

One of the things I did when I started using Caffeine was to only use it when I would tak antibioticsi and no other times.  This was a big change over what I had been doing, using caffeine all day long as a way to stay alert while going to work and driving.   I haven't done that since early December but now I wonder if I should.

Chronicles of a Rifampinaut: pulse 41 begins

I finally decided to go ahead and do pulse 41, albeit with slightly less flagyli then normal.  Normal for me is 3x500mg of flagyl every day but this time I'm only doing 2x500mg per day.  I was a bit unsure about doing it since I still cannot even consider going up or down stairs, or walking out to my car for that matter.  However, that all being said, I know that I'm not going to get better on just doxyi, azi, Rifampin, and Amoxicillini.  You have to kill off the infection to improve.  So, that's what I'm doing.

I haven't exercised my legs in over 2 months and my walking has gone down hill big time.  Just getting out of bed and walking to the bathroom is hard but I still can do it.  That's the important part.

the status of things

Here I am after 4 years of following the CAPi, religiously, having more problems then I've ever had, in just a hell of a condition.  Even so, I want to get to the other side of this and come out able to function as close to "normal" as possible.  I've been trying to get my doctor to send orders that I can use to get tests done at LabCorp or Quest for Mycoplasma Pneumonia, Chlamydia Pneumonia, and Lyme (Borellia) but after 3 days, he has not replied to my requests and nothing has shown up in my mail.  It may show up eventually but as far as I can tell, he isn't willing to do that.

getting the titres...

I was very mistaken in accepting the results of my CPni blood tests with the statement "the tests are negative", which in reality tells me absolutely nothing as a very well informed doctor was telling me on Monday.  It might have been misinterpreted by the clinician or doctor who was looking at the results, leading them to make an incorrect conclusion about them.  So I'm going back and getting the results sent to me again, in more detail, hopefully.  I don't know if they keep the details of it but I'm going to ask anyway.

Chronicles of a Rifampinaut: the more things change, the more they stay the same

Here I am, over 4 years into the protocol and seeing very little improvements.  I may be damned to this for the rest of my life.  I don't know yet so I'm still not quitting.

In March, towards the end of it, I stopped taking caffeine; I haven't had any since.  I became increasingly unable to walk up that poiont and needed help with getting from my car inside, or from inside to my car.  That hasn't changed.  I never saw the sky during the month of April, I've been stuck home inside the entire time.  Fortunately, my employer is letting me do that for now.

falling

As many of you know, I've been recently falling more.  I was already falling but now it's happening with predictable frequency.  When it's happened lately was just after I excercised on a machine I have in my home that works like a seated elliptical trainer, if you know what those are.  Here's a link to a picture so that you know what they are.

http://www.treadmill-world.com/files/healthrider-cardio-rider-bg.jpg<

Anyway, I was using it nearly every night and after getting off, despite being exceedingly careful not to fall, woom!  Down I go.

Chronicles of a Rifampinaut: the journey continues

Many things cross my mind over the course of the time since I last wrote a blog entry.  Some are likely more interesting then others.  I have no idea what interests people so I'll leave it to you do decide.

liver problems? what's going on?

Okay, I had something odd happen about a half hour ago.  I was up, working, and noticed that my ab muscles were achey/crampy.  I can explain it, though it doesn't make sense that it just started, that I didn't notice it earlier.

The reason I thought I should have noticed it earlier is because last night, I fell, smacked my forhead against a wall (I left a dent in the wall but no holes), and had a horrible 2 hours, trying to drag myself across the carpet about 20 feet back into my bedroom, then up onto my bed.  I had a hard time doing that and repeatedly tried and failed, hence the 2 hours.

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