Posted 9/12/2016 6:01 PM (GMT 0)
which is kind of hard for me. But I have been responding to posts, and I guess I feel like you all should know me a little more. I am happy i came out of my shell to be here for more than just research.
I put a summary down at the bottom cause I know I am really long winded...
My history is very different from many of you because I don't know what started this cascade if sickness. I was a super healthy, totally fit college athlete in the prime of doing whatever I wanted physically. 2 days out of my senior year of college, my Dad passed away extremely suddenly and totally unexpectedly. This, i think, was the dramatic beginning of my downfall because my family fell apart. I was/am emotionally wrecked.
Time to start my new job, and finish 6 hours of credits to graduate. i was working 35 hours per week and driving 1000 miles a week to school and back for class (no internet yet!!) --- One day I woke up with an amazing and gawd-awful rash. My now hubby to me to the Er and they gave be Benadryl. At this time, I became a raging asthmatic, chronic bronchitis, couldn't run around the block mess... being on an HMO i couldn't get any referrals, so i was given abx after abx which didn't help. I put on about 50-60 pounds with this illness, but was told the old line, eat less and workout more. i was also having trouble with infections in the private areas. We never could have a baby. Time passes, and we rent a house with a mercury problem. Both my hubby and I became extremely ill. Same advice from conventional docs... eat better, workout more, lose weight... you're fat.
I kept searching and finally found a more homeopathic MD. He said shop organically, change your diet, cut out sugar etc. Take these million supplements. This was 1999. Detoxed the mercury and really started to feel well again, minus the asthma, baby making ability, basically the original problems. I lost 40 pounds instantly and was back to playing sports competitively, albeit with lots of inhalers and coughing. That lasted about 8-9 months, and I ended up in the hospital because my asthma was uncontrollable. No blood ox, couldn't breathe.
Then, a few years later, in 2002 my appendix ruptured, but only a little bit. My immune system walled off the infection and doctors wouldn't give me the time of day... even though a CT scan showed a shadowed, walled appendix. 2 years and 10 months and a gallbladder removal (oops) later, they finally took out my appendix, but not before damage was done... scarring of anything in that vicinity. I put on 50-60 pounds. I have never been well since. I wanted desperately to get better so I decided nutrition was a way to try. We met a macrobiotic chef (who is now my best friend) in 2006, and she taught us how to cook for healing. Many things improved, like my asthma... i don't need meds anymore. Yay. Maybe I can make progress!! I am still NOT too old for kids!!
Fast forward to 2013, and I still couldn't lose weight despite our amazing nutrition. I got sick in April. Weird sick. body aches that were unmatched by anything I'd ever felt. Fever. But it wasn't affecting my stomach like the flu. It went away only to come back 6 weeks later but this time with a kidney shutdown. I was fine one minute and the next I was in the ER in so much pain I couldn't stand it. They found no reason why, so they gave me abx for a UTI (which I didn't have). After a horrible trip to italy with friends where I was digestively sick the entire trip, I was smart enough now to go back to my homeopathic doc who had me take Igenex test... which came back POSITIVE for Lyme. He then sent me to an integrated Lyme doc. i don't recall a tick bite, never had a rash. None of it made any sense to me, although I know we live in an area abundant with them. We always check and shower etc. after being outdoors. Common habit in our house.
The treatment consisted of tiered abx for 9 months, but I wasn't feeling any better. So we took a break and I did another mercury detox, but it seemed fine. The tests for that had normalized. Back on abx for 1 month, but I felt only worse from side effects. I had been reading a lot about ozone therapy and ultraviolet blood irradiation... and figured what the heck. In February 2015 I started UBI treatments w/ ozone. By May I can honestly say I had zero symptoms of the Lyme that had been knocking me on my ass. I felt freaking fantastic!! I started playing softball and golf again after a 9 year break. Life was good, right?? Well, it was for about 8-9 months (seems to be a common theme this 8-9 months).
I felt better, had energy, but I could not lose weight no matter what. Clean diet. Exercise 6 days per week. What the flip? I started working out with a friend. We were doing the same routine, burning the same calories... she lost 25 pounds and I gained 2. I was feeling ill after workouts. Fatigue was back (oh, crap). My docs were confounded. I did the genetic testing and know my phase 2 detox is terrible, so we supplemented that. I put on more weight.
I started researching and I learned about CIRS. I have that. it makes sense. Lucky for my me old Lyme doc does the testing. March 2016 I had CIRS testing done. I am a multi susceptible which means I will struggle to detox both Lyme and mold. My mold numbers were fine on the blood work. Not living in a moldy environment.... whew. I definitely had CIRS markers showing an active problem. Started the Shoemaker protocol in May. I am still actively doing it, even though I took July off for a vacation. I have been back on it full force since August. My last VCS tests were improved but not passing. My last blood work which just came back last week show CIRS markers holding steady if not a bit worse... so that has led me to believe I am fighting a co-infection.
Summary:
order of sickness:
Mycoplasma 1992 (this is my gut feeling... no proof)
Mercury poisoning 1997
cleared mercury in 2001
appendix rupture, leaking and causing slow poisoning in February 2002
Appendix out in December 2004
Sick with few good days until 2013
Lyme diagnosis in August 2013.
CIRS diagnosis in April 2016
Mycoplasma confirmed August 2016 (at least a past infection)
order of treatment:
abx 9 months in 2013/2014
stopped abx for mercury detox but that seemed fine
abx 6 weeks or so in 2015
UBI & ozone therapy in 2015, over 4 months. Holy mackeral I got better!!!
continued home ozone treatments thru 2015
2016, different symptoms completely now.
April 2016 CIRS diagnosis. Start Shoemaker protocol.
August 2016, Lyme test redone and negative, so they seem to be in remission for now. Mycoplasma positive.
august 2016 started UVLrx treatments, which is a less invasive UBI treatment.
The co-infections seem to be kicking my booty now. I was feeling great for 8-9 months. But CIRS markers are all elevated with a failed VCS test. Mold marker is normal, so i am still infected by ... something.
My old symptoms were lyme arthritis, stiff neck and horrifying digestive issues with fatigue where I would sleep all day and all night. Those are all gone now, replaced by new symptoms. Asthma and air hunger are back. i don't need inhalers yet, but I whistle when I breathe. I have anxiety issues and I am always tired but can't settle down to sleep. Neuro symptoms too like blurred vision, dizzy, foggy head. Work production has stopped.
I started reading Buhner's book on mycoplasma & bart. It's so technical. I am afraid to start the protocol on my own. Not sure I have enough knowledge... it's intimidating,
My LLMD is on board with staying on Shoemaker for another month and then trying to really nail down the co-infections. That's good at least... but I feel like i definitely need to try the Buhner protocols based on this forum and the success stories.
UVLrx is definitely helping for antibacterial as is Shoemaker protocol for removing the toxins my body can't, but I am realizing that I need to support the cytokine storm better, and also my immune system with his herbs.
Anyhow, that's me. in a very long winded message.