Hi Everybody on Lymenet. I've been absent for long while b/c it's hard to post when your life is going down the toilet.
I used to post (several generations ago under 2 different names...TO THE POORHOUSE AND HEALTHY WEALTHY WISE). I really did think by using the former I was bringing bad karma on myself so I tried a more upbeat id. Didn't work.
Now, I'm "I'm done" b/c I've been so sick for so long...and give up. I have to learn to live w/lyme & Co.
APOLOGIZE IN ADVANCE FOR LONG POST BUT I HAVE TO GET IT OUT QUICKLY B/F I'M GONE AGAIN.
On worst days, as most are, I cannot eat, use computer, leave my house, even talk on the phone. I'm kind of an upright vegetable in real life.
Fast forward....7 years ago I was told I should have a colonoscopy by my doc as my mom died of colon cancer. I did it and they did find polyps they removed.
I was told I need to come back in 3 years for another scope. In meantime, I was experiencing horrible herx like symptoms even when not treating of gastro variety. Even started have apnea so bad I'd wake myself up f/sleep NOT BREATHING....every time I tried to rest.
My later bloodwork showed I had hit the motherload for lyme+...everything. Also, I had active H-Pylori infections noted. Huh?
I read up on it and seems it's a bacteria most humans have but most are non-sumptomatic. Huh.
Can I tell you, lyme is a cinch compared to h-pylori. Think heaving, bathroom issus, stomach pains, fever, chills, etc. Sounds like a herx, right?
My doc said for my second colonoscopy, she wanted to test for HP as a possibility for my increased symptoms. I will tell you when it hits, I am in bed for 10 days or so, and cannot move out of it. It gets so bad, I cannot shower or eat, I just lay there suffering to the point I pray for death. I mean REALLY PRAY FOR DEATH.
Endoscopy showed NO h-pylori infection (same place and time as second scope done). ??????
I know I have it from personal symptoms ...as well as blood test results confirming active infection. Why didn't they find it?
I'm not one to point fingers....but I never had HP until AFTER I HAD THE FIRST COLONOSCOPY!!! Will add in that the clinic was really a meat market where patients were lined up in hallways, left me for an hour+ waiting in a gown that didn't close and that man across f/me had his privacy curtain open so that I had a full view. ICK!!
I am positive that the clinic gave me the h-pylori. I know I cannot prove it, but the timelines and the strange neg. test for pylori makes me think their cleanliness problems and bad patient care points to them being responsible.
Not sure if a tech/nurse/doc didn't wash their hands, or the equipment used for the colonoscopy wasn't cleaned properly or what.
All I know is that I never had it before and now am suffering the double hit of lyme+ and HP. What a wonderful life.....not. No real cure for either for me so I do pray for death at my worst.
Please, no "life is a gift", "don't do anything drastic" b/c I would NEVER do that. Against my faith (though that has dwindled over my journey) and family would be left to life w/that mess.
So, long winded I'm sorry....but please check your facilities before letting them touch you. I never even considered they could make my life worse, but there you go....wrong again.
Posted by poppy (Member # 5355) on :
HP is treatable. And I think there are other tests that can find this. Never heard of looking for HP in a colonscopy but that might be my ignorance. Seems like the meat market aspect of this and possible infection should be of interest to state regulating offices, maybe even as an anonymous complaint.
I have avoided this test. It just sounded too much like the other "routine" tests that are demanded of us, like mammograms which turned out to be less than stellar in performance. Sometimes apathy saves you from things.
Sorry about your situation. Hope things will get better for you.
Posted by randibear (Member # 11290) on :
wow. I'm so fortunate to go to baylor and their outpatient facilities.
they cleaned my room twice a day. I had all my colonscopies at their outpatient place. very few patients and spotless clean.
I'm sorry you had such a bad experience. nowawdays you can pick up deadly germs just going to the store.
my dad had colon cancer and one sister has diverticulitis like me. I've had polyps removed too so unfortunately I have to have these done but I sure hate them.
Posted by steve1906 (Member # 16206) on :
Poppy,
quote:Never heard of looking for HP in a colonscopy but that might be my ignorance.
(I'm Done) also had a Endoscopy which is one of the test they do for H-Pylori infections.
I don't know how old you are but please do some more research on colonoscopy's.
The first time I went they found a LOT of polyps, they removed them all. They rescheduled me again for one year, found a couple more. Next appointment was for two years (found none). Now I go every five years.
Colon cancer is not going away, I believe this is the best test to detect colon cancer.
I'm Done,
I'm so sorry you're suffering so much with all of these diseases.
It sounds like that Clinic is not one of the best!
Take a look at the site below from Mayo Clinic, I'm sure you've read hundreds of sites.
I hope you find some relief soon!
Tests and procedures used to determine whether you have an H. pylori infection include:
•Blood test. Analysis of a blood sample may reveal evidence of an active or previous H. pylori infection in your body. However, breath and stool tests are better at detecting active H. pylori infections than is a blood test.
•Breath test. During a breath test, you swallow a pill, liquid or pudding that contains tagged carbon molecules. If you have an H. pylori infection, carbon is released when the solution is broken down in your stomach.
Your body absorbs the carbon and expels it when you exhale. You exhale into a bag, and your doctor uses a special device to detect the carbon molecules.
Acid-suppressing drugs known as proton pump inhibitors (PPIs), bismuth subsalicylate (Pepto-Bismol) and antibiotics can interfere with the accuracy of this test. Your doctor will ask you to stop taking those medications for a week or two weeks before you have the test. This test is available for adults and children.
•Stool test. A laboratory test called a stool antigen test looks for foreign proteins (antigens) associated with H. pylori infection in your stool. As with the breath test, PPIs and bismuth subsalicylate can affect the results of this test, so your doctor will ask you to stop taking them for two weeks before the test.
•Scope test. You'll be sedated for this test, known as an endoscopy exam. During the exam, your doctor threads a long flexible tube equipped with a tiny camera (endoscope) down your throat and esophagus and into your stomach and duodenum. This instrument allows your doctor to view any irregularities in your upper digestive tract and remove tissue samples (biopsy).
These samples are analyzed for H. pylori infection. This test isn't generally recommended solely to diagnose an H. pylori infection because it's more invasive than a breath or stool test, but it may be used to diagnose H. pylori ulcers or if it's needed to rule out other digestive conditions.
And right Poppy, I did have an endoscopy along w/colonoscopy simul assault second time. My theory is that the first colonoscopy caused colonization of bacteria by dirty conditions/equipment etc is how it got into my colon. Then spread.
H-Pylori is not always curable. Trust, I have been on PrevPAC twice (multiple abx + Prevacid combined in pack taken 3x daily for 14 days and both times regimens failed).
Felt better for bit on first series but it didn't stick (common). Then second series failed as I couldn't keep anything down. Just water for 10 days is it and even that was tough.
Many think HP is just stomach issue, but it can and did for me, go my entire system. Starts in stomach but full rager has it in my nasal cavity all the way down and including my..uhm, exit area? I can actually taste and smell when HP is active along w/sight of food makes me turn away days before. Horrible b/c I know what's coming and can't stop it.
Those of us know abx causes a herx, so both times I herxed AND HP active was a nightmare is all I can say. How much trauma can a body take? I must be Wonder Woman to survive it? I'm still weak and can't do much of anything.
Now trying holistic approach as with research, found the docs should NEVER give same Prevpak combo twice. If first fails, try another combo of abx but original will NEVER work again.
God, I know way too much about illness and lyme+......more than ducks ...that's for sure. Posted by randibear (Member # 11290) on :
be careful and watch for c diff.
Posted by poppy (Member # 5355) on :
I'm not normally much of an alternative med person, but maybe it might be worth looking into other ways to fight the HP. Google Mercola on it?
Posted by hiker53 (Member # 6046) on :
If you are married or have a partner H. pylori is easily spread through kissing, so your partner should be treated as well or you will just keep getting it back again.
The blood test is not nearly as accurate, because the antibodies will remain elevated even after the infection is gone.
According to what I've read, breath tests are the most accurate. I would think stool testing would be good, also.
There are herbal alternatives to the traditional triple or quadruple med method of getting rid of h. pylori...
Posted by Judie (Member # 38323) on :
"Analysis of a blood sample may reveal evidence of an active or previous H. pylori infection in your body. However, breath and stool tests are better at detecting active H. pylori infections than is a blood test."
For me it was the opposite. I had HORRIBLE stomach pain. The stool test showed nothing. It was the blood test that showed H. Pylori. I had the tests the same week.
I treated with prev pack for 2 weeks. My doc didn't even want to target Lyme until the H. pylori was under control.
The pain was waaaaaaay less afterwards so the prev pack did something good.
Mastic gum and DGL are suppose to help and they are natural.
Still deal with pain/colon spasms once and awhile and I take peppermint oil for that.
Posted by lpkayak (Member # 5230) on :
Lining patients up -moving them in and out-is the new way and spreading all over country
More money is made
It was like that for my lumpectomy. Horrible. At best hosp around. Mass general moved in and it is a horrible place
Patients suffer and so do staff
I travel an hour away wherr i am treatrd like a human when i csn. But cant for er
![[Frown]](frown.gif)