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Posted 3/30/2016 1:28 AM (GMT 0)
So, I have posted that I am cdc positive for lyme disease through my own blood work through the USA and I am in Canada.
Today I received my blood work results from my llnd for co infections after a whopping 1050 dollars. Rocky mountain spotted fever, yup.
The thing that bugs me the most is about 6-7 years ago I begged PLEADED with my family doctor to test for lyme and co infections because I did not feel well for long, she came up with CFS, FIBRO, Anxiety, Depression, anything that isn't lyme she just plain said nope not lyme. Even though I told her I spend 2 months out of every year in long island new york, she refused called it depression, saying it's in my head and I am healthy. I have been fighting EVERY darn DAY since then to find out whats wrong with me.
And to read this has a 75% mortality rate and better treated sooner really royal pisses me off to no end. *** is this malpractice? Or were they following guide lines? Oh sorry your heart, brain, kidneys, lungs, fingers, toes dont matter we can cut them all off. I am freaking out because on this site... http://www.mayoclinic.org/diseases-conditions/rocky-mountain-spotted-fever/basics/complications/con-20032780
Under complications it says they might have to amputate if it gets bad enough. Here is the thing for the last 4 years I have constantly complained about my fingers and toes being numb and tingly 24/7 and now realize maybe I should be worried more? My chest is always so tight and painful also but my docs never look into it they just say your blood work is normal. This is so infuriating I can not put into words how upsetting this is, is that wrong how the doctors handled it? Why do I have to suffer so much?
Posted 3/30/2016 1:46 AM (GMT 0)
Well I am sorry that you are having to go through this. However it is not necessarily malpractice because they are following guidelines which is why we get so frustrated. It is frustrating to hear constantly that your blood work is fine and you look to good to be sick so it must be in your head.
That being said some teaching of the doctors you have seen is in order. Lab results along with information on ilads being given to them will either show their willingness to learn because as a true MD you are always learning. Or it will show their true willful ignorance. And at that point it is out of your hands but may save the next person in their office.
Posted 3/30/2016 2:06 AM (GMT 0)
Sandor - Has your LLND said how your RMSF would be treated?

i have been reading that doxycycline is the antibiotic used to treat it.

The 75% mortality rate is untreated. Now that you know you have it, you can be treated for it.

i have a question: What type of test was it? Is it a Western blot?

What is your current treatment under this LLND's care? Are you on antibiotics?
Posted 3/30/2016 2:26 AM (GMT 0)
It is called Pharmason Labs from Osceola WI it says. "Rocky Mountain Spotted Fever IgG, EIA, positive" "reference range neg : <1.64 results 1:128"
Ok bare with me I just saw her today so this is a sort of work in progress she is sending me a concrete thing tomorrow.
At this time from my general doctor is doing clarithromycin 500mg x2 a day also doing bicillin LA 2.4 once a week. Tomorrow will be 4th week injection.
My LLND this is what she wrote...
Cyst: grapefruit seed extract 2 a day it's ok with antibiotics.
Savertero? 2x a day
probiotics 50 billion cfu/day plus sachronyces balendiu?? can't read her writing a day
liver support brocco glutathion 1 2x a day
biofilm lumbrok?? 1x 1 a day empty stomache
tads - 2 in the morning for adrenal support
magnesium nalate - 2 at bed
co q10 1 in morning
vit d 4000 IU
green clay for herx

Also wants me to ask for blood work
alt ast g???t creatinine cbc urea egfr alkaline phasphatese

sorry her writing really sucks ill repost when I recieve the email
Posted 3/30/2016 2:45 AM (GMT 0)
That's too bad that she won't email your GP to request blood work.
That's what my LLND did.

The ALT/AST and Alkaline Phosphate are liver function tests - important when on antibiotics
CBC - Complete blood Count -
Creatinine, GfR, Urea - kidney function tests
Posted 3/30/2016 5:38 PM (GMT 0)
If you remember in a earlier post I had said that I went to see a psychologist before I got this recent result. I was just thinking this morning, in her report she said I make my illness see worse than it really is to seek attention and or more help. I am thinking of going to her office and shoving this result in her face, and say yup your right 6 years of me playing. lol
Posted 3/30/2016 6:34 PM (GMT 0)
Sandor - I understand your anger...but I think doing something like that will only add more stress.
And she will just write down on your file that you have an anger issue....or something like that...

Sometimes we just can't win with the wrong Doctors.
Posted 3/31/2016 12:31 AM (GMT 0)
Hey, so I went to see my GP today and told showed him the results from the co infection, the rmsf positive. He said "I don't think you have this that is odd." and asked what my LLND wanted to do she suggested 3 months of the antibiotics I am doing now, and he wanted to stop doing the orals as of today and I asked for another month and he was a bit hesitant but agreed to it. He is also wanting to test me for rmsf here in Canada tests so not sure how that will pan out, but he wants me to wait 4 weeks to draw the blood..
Posted 4/3/2016 5:15 PM (GMT 0)
Im mad for you..my test came negative but i think i have it according to art tester...listen to your nd....maybe rife?
Posted 4/3/2016 5:24 PM (GMT 0)
I had RMSF when I was 7 years old- but I was on the West coast, and it was in 1970 - before Lyme and tick-borne diseases weren't even thought of back then. I was diagnosed with a "fever of unknown origin". It was quite a fever too - I had to take 3 - 4 ice baths daily as nothing was reducing my dangerously high fever.

I was treated with abx though, as they assumed it was from some sort of infection, but it was a "standard" treatment for infections - about two weeks long, and it's really quite safe to assume that was the same tick bite that gave me chronic Bart symptoms the next year, and chronic Lyme symptoms the following year after that.

I tested fully CDC positive for Lyme and RMSF in 2008 - 38 years later.

I'm an abx failure, so I ended up treating with herbs only and healed. Keep on listening to your 'gut' and doing what you need to do in order to find your healing.
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