Pushing for labs-be your advocate

[Who Me?]

I wasn't sure where to put this.

For over a year if not more I have felt like I wasn't getting enough air into my lungs. Like I was only using the top 1". And if I was PEM or off, forget it. It caused fatigue and horrible brain fog, on top of my ever present fatigue and pain.

I told every doc I saw about it. I was tested for asthma and other lung issues by an allergist. The ID dismissed me, my NP listened but didn't know. My O2 sats were fine. Doctor upon doctor checked my breathing and lungs and I was fine. I knew I was not.

I asked the 2nd allergist (immunologist NOT) to test me for mycoplasma. I was positive years ago and I just felt it was this connected. He refused and told me to see my PCP for the labs. I would forget to ask but finally last October I asked my PCP. He had never even heard of mycoplasma pneumonia but he ran it.

Low positive is 770-950 Positive is 950 and above. I was 1256. On another test greater than 1.10 is positive. I was 1.75 My PCP couldn't be bothered to call me but my NP emailed me about how high they were and we would discuss them at my appointment the end of December. I was not going to wait so I started myself on doxycicline per Dr. Garth Nicolson's protocol. I could only tolerate 100 mgs/ day. Any more and the die off was horrible.

Within days I was feeling better. I can breath easier and there are times when my brain is so clear I can't believe it. It does not help the ME neuro cog crap but still, I'll take what I can get. I still have to be really careful with overdoing. An hour of exertion throughout the day is too much. I can tell when I over do it because the brain fog sets in and I feel my lungs get tight. I believe it's inflammation from the infection but who knows. I still get PEM for a day or two but it's bearable

Anyway, I feel better than I have in over a year. But remember better is relative. A healthy person who felt like me would be in the ER.

If you feel something is off, push and go with your gut. You have to be your own advocate. No one else will push like you will

 

[Cort]

I wasn't sure where to put this.

For over a year if not more I have felt like I wasn't getting enough air into my lungs. Like I was only using the top 1". And if I was PEM or off, forget it. It caused fatigue and horrible brain fog, on top of my ever present fatigue and pain.

I told every doc I saw about it. I was tested for asthma and other lung issues by an allergist. The ID dismissed me, my NP listened but didn't know. My O2 sats were fine. Doctor upon doctor checked my breathing and lungs and I was fine. I knew I was not.

I asked the 2nd allergist (immunologist NOT) to test me for mycoplasma. I was positive years ago and I just felt it was this connected. He refused and told me to see my PCP for the labs. I would forget to ask but finally last October I asked my PCP. He had never even heard of mycoplasma pneumonia but he ran it.

Low positive is 770-950 Positive is 950 and above. I was 1256. On another test greater than 1.10 is positive. I was 1.75 My PCP couldn't be bothered to call me but my NP emailed me about how high they were and we would discuss them at my appointment the end of December. I was not going to wait so I started myself on doxycicline per Dr. Garth Nicolson's protocol. I could only tolerate 100 mgs/ day. Any more and the die off was horrible.

Within days I was feeling better. I can breath easier and there are times when my brain is so clear I can't believe it. It does not help the ME neuro cog crap but still, I'll take what I can get. I still have to be really careful with overdoing. An hour of exertion throughout the day is too much. I can tell when I over do it because the brain fog sets in and I feel my lungs get tight. I believe it's inflammation from the infection but who knows. I still get PEM for a day or two but it's bearable

Anyway, I feel better than I have in over a year. But remember better is relative. A healthy person who felt like me would be in the ER.

If you feel something is off, push and go with your gut. You have to be your own advocate. No one else will push like you will

Wow! What news Minx.

Congratulations on pushing forward on this. I must confess that I had given up on mycoplasma's.

It makes me think. My lungs are sooo sensitive to airborne elements. Just working in Starbucks bothers me because of the coffee dust.

It's just really interesting - your lung stats were fine - but clearing up the infection - as far as you've gone with it - enabled you to breathe better and get more oxygen to the brain. It''s clear that the lung stats did not pick up what was going on.

How long have you been on the doxycycline and how long do you expect to be on it?

Hey, it's great to see some progress - any progress!

 

[Who Me?]

@Cort. I've only been on the doxy about 2-3 weeks. I have also been taking roxithromycin For over a year. This absolutely clears my brain fog but not too much of my lung stuff.

The last few days Have not so good but I've had some pretty good days so I know I'm on to something! Yea!

This is not a sprint for me. It's gonna be a long haul. If you look at nicolson's protocol It's 6 months to start then 6 weeks on 2 weeks off. Plus toss in some Antifungals.

 

[Cort]

@Cort. I've only been on the doxy about 2-3 weeks. I have also been taking roxithromycin For over a year. This absolutely clears my brain fog but not too much of my lung stuff.

The last few days Have not so good but I've had some pretty good days so I know I'm on to something! Yea!

This is not a sprint for me. It's gonna be a long haul. If you look at nicolson's protocol It's 6 months to start then 6 weeks on 2 weeks off. Plus toss in some Antifungals.

Nice to find some help - good luck!

 

[Who Me?]

Just had an appointment with my NP and she's totally onboard. ABX, antifungals, the whole works, long term as needed. I'll be cured! Lol.

She wondered if mycoplasma can affect mitochondria and that is what is causing brain inflammation? Don't know.