Always suspected I had a lung bug but no Doctor would diagnose.

Hi guys, 

I'm new here.  I have a history of lung infectionsi from living in NYC in unheated apartments and so forth.  It started in 1998 when I began coughing up stuff that had a metallic taste constantly. It went away in the summer but would return in the winter.  I had no health insurance so didn't go see a Dr till 2006.  I finally saw a Doctor who said I might have "walking pneumonia" and prescribed a week of antibioticsi.  I got better while taking them, but after the week was over the symptoms came back but not as strong.  In 2013 I started having heart palpitations and lung spasms, my right leg was paralyzed for a month, and I started not being able to breathe all the way down to the bottom of my lungs.  I coughed up a lot of weird, super sticky stuff from my lungs that was very hard to bring up.  And have been doing it ever since on and off.  The symptoms seem to reduce in summer and increase in winter.  The best doctors could tell me in 2013 was that I had lived in a water compromised building and had been exposed to mold and pesticide. I saw an "environmental specialist" who treated me for possible mold exposure with the Shoemaker Protocol.

After the "unexplainable"  crisis in 2013, I devoted my life to health and finding out what was wrong with me. I learned how to eat organically and did a Weston Price style diet. But I couldn't do cardio very much now with my breathing trouble and I gained weight. The Affordable Care act was passed and I got on health insurance and got a Primary Care Physician.  He thought I had "asthmai" and tried to give me an inhaler but I refused it.  I just couldn't believe I could "develop" asthma this late in life.  I explained to him that a doctor had told me I had "walking pneumonia" in 2006 and had been coughing in the winter ever since but he didn't think that was relevent.  

Ever since 2013 I have been searching for the answer to why I can't breathe all the way down to the bottom of my lungs sometimes, why cardio is much more difficult, why I have a burning sensation in my lungs sometimes, why I sometimes feel as if I have a low grade fever going on, etc.  After finding this information on asthmastory.com, I wonder if I actually have CPNi or another type of bug in my lungs and need a course of antibiotics to kill it.  What do you think?  Opinions?

Here is a list of the symptoms I have TODAY.

1) burning lungs sometimes.  Can feel irritation at the bottom of lungs.

2) can't breathe all the way down to the bottom of lungs, can only get air 2/3 of the way down. Very difficult to do cardio, gained weight.  Took 3 years of hard fighting every day to get to a size 10 which is still larger than normal for me.

3) shortness of breath that grows worse at night sometimes. It only JUST let up enough for me to begin to do some real Cardio, for the first time since 2013, that's 3 years.  Still, only half or a 3rd as much as I was able to do previous to this.

4) cheeks that are too red, they were never this red before.

5) inflamed joints sometimes, the location switches. 3 years ago it was unexplained shoulder pains that were so bad I couldn't do pull ups. The next year it was my knee and ankle which swole up unexplainably, then went back down.  Luckily I refused cortisone shots and so forth, so my joints are not compromised in any way other than the infection.  This year it's the front of my left hip and my left wrist, which has developed a Ganglion cyst.  No Orthopedist seems to be able to understand what is going on or why or offer any help other than things that compromise the joints.  One said "IT Band Syndrome".  The knee is ok now.

6) sudden "jumps" in pulse sometimes that I can feel if I'm sitting down, sitting still, lying down just waking up and so forth.  They are scary.

7) headaches and pressure in head that wasn't present before. I never used to get headaches, ever, as a young adult.  Now it seems I can get one from stress.  And during my period it becomes very bad, almost migraine quality.  Why did this change?

8) veins that show up more, and a varicose vein in my right leg.  Swollen right leg.

9) sudden nausea for no reason, that dissapears just as fast

10) Low energy compared to before all this began.  I have to FORCE exercise whereas it was spontaneous before this.  Have to gear my WHOLE LIFE toward diet and exercise just to have a reasonable figure, it's not effortless as it once was or even within reason.

11) a bloated stomach/abdomen that sticks out as though I am pregnant, even though I had a beautiful flat stomach before all this.  Weight gain in my midsection.

12) constantly inflamed and blocked sinuses, can rarely smell things any more.  Natural state seems to be either a clogged or running nose.

13) Sometimes cough up either very thick mucus or less thick liquid from lungs.  Always clearing throat, coughing. always spitting stuff out, especially when I jog.

14) Constantly feel like I have a small fever.  Face/head feels hot, throat scratchy, lungs painful, stomach sticking out like never before

15) white coat on back of tongue that never seems to go away no matter the quality of probiotics I use.  I use a tongue scraper all the time.

16) occasiaonlly get what feels like a heart spasm or "jump", and a "jump" in an area of the lung, although nothing compared to what I expereinced in 2013, it's still scary and I want it to go fully away.  Can't believe I'm still dealing with it sometimes after all I've done.

A lot of the symptoms you describe are MY old symptoms, eleven years ago.  Get your paws on some N Acetyl Cysteine (NACi).  If you develop flu-like symptoms after taking it, you likely have a cpni infection.  (NAC doesn't affect a healthy body otherwise.) 

If you can get a cpn test done, by all means do it, but the NAC test is quicker.  Getting a doctor to prescribe antibioticsi is going to be your next hurdle.  Finding a Lyme-literate doctor will probably be your best bet.  (Have you been tested for Lyme, by the way?)

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

Never been tested for Lyme, didn't think I had any symptoms that Lyme people describe. I will get the NACi, THANK YOU!!!!!  I made an appointment for June 23 with a Doctor that I found on this site, Dr. Satnick in Holbrook, Long Island, NY.  I'm hoping that since he is listed here he is familiar with this and can tell me if I have it or not, and if not, what it is and what I should do.

THANK YOU AGAIN!!!!  The Mold profile just didn't fit! And I knew I didn't have Asthmai, thank you so much!!!

Xtine000<,

What Mac said

+ Your symptoms sound like mine few years back (and many still lingering today). I have both LYME and Cpn. I was tested in Germany (InfectoLab) and USA (IGeneX

http://www.igenex.com/Website/<)

I would recommend to get tested for both LYME & Cpn OR just do the NACi test and, if positive, treat both with CAPi.

MHW

The arthritis moving around from joint to joint does sound sort of like Lyme, but not the respiratory symptoms.

Here's why I didn't think it was Lyme:  I lived in NYC since after college, for 19 years.  No ticks.  No forests, no lawns.  I started having the symptoms while I was still in NYC.  It's true that I did go to high school and college in Virginia and Maryland, but I was healthy then.  I only started having these symptoms in 1998 when I lived in an unheated apartment in Brooklyn, and a doctor did actually tell me I might have "walking pneumonia" in 2006.  What he didn't tell me was that it was going to take way more than the week's worth of antibioticsi that he offered me, to get it to go away.  This is crazy. I usually avoide antibiotics like the plague.  Now I may have to be on them for a year?  My appointment to see Dr. Satnik is on June 23.  Till then, I'm going to use Garlic, Goldenseal and Eccinacia, and other natural bacteria fighters.  We shall see what the tests turn up.  Thank you all SO MUCH for your help!!! Who knew I may have had had stubborn, resistant Walking Pneumonia all this time?????? My God....

Walking pneumonia means that you have pneumonia but can still walk; with the other type of pneumonia, people stay in bed (or a chair or whatever).  Cpni causes a lot of "walking pneumonia", likely because it grows rather slowly compared to other microbes so the infection never gets overwhelming.  But it makes up for that by sticking around.  What you have at the moment wouldn't be "pneumonia" of any sort, just a persistent infection from it.

NYC isn't tick country, but the surrounding areas are prime Lyme territory.  What you have doesn't sound like Lyme, but I wouldn't rule it out entirely.

The most ludicrous thing I ever heard from a doctor was his comment when I asked if I might have Lyme.  (I live in Chicago.)  He told me, "There is NO Lyme Disease in Chicago. They DO have it in Wisconsin, but not here." 

Well, Wisconsin is 66 miles from Chicago and I don't think the bugs have much respect for State lines.  I spent all my summers in Wisconsin through my teen years.  I went on fishing trips with Dad to upper Wisconsin/Michigan as a young woman.  I regularly travel to Wisconsin for vacations and shopping to this day.  But the man never bothered to ask if I'd spent any time in Wisconsin, like vacations or business travel, or if I'd traveled anywhere else that has a Lyme issue.  Maybe like LYME, CONNECTICUT, where I visited friends repeatedly?  

Never presume your doctor is smarter than you are.  Question everything.  Now, I'm not saying you have Lyme Disease, but you could have picked up a tick from someone else's clothes, luggage or pet without ever being aware of it.

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

I will request a test for both Lyme and CPNi when I got to Dr. Satnick.  Wow.  Thank you all so very very much for your help.  I was going nuts for 3 years trying to figure out what the problem actually was.  I knew I didn't have "asthmai".  They should ask all patients if they have a history of lung infectionsi when you go in to see the Doctor, complaining of shortness of breath.  Wouldn't that seem logical?  SMH

I will request a test for both Lyme and CPNi when I got to Dr. Satnick.  Wow.  Thank you all so very very much for your help.  I was going nuts for 3 years trying to figure out what the problem actually was.  I knew I didn't have "asthmai".  They should ask all patients if they have a history of lung infectionsi when you go in to see the Doctor, complaining of shortness of breath.  Wouldn't that seem logical?  SMH

If you are treating for CPNi - you are treating for lyme also and it does sound that way with the joint issues. I have Cpn + Lyme...

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