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Am I a victim of 'Big Pharma'?

The various unpleasant manifestations of Helicobacter can be described here. Remember however that the great majority of persons with Hp have no symptoms that they are aware of and consider themselves normal.

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emma frost
Posts: 7
Joined: Wed Jul 08, 2015 9:37 am

Am I a victim of 'Big Pharma'?

Post by emma frost »

In 2002 I was having a lot of issues with frequent skin rashes. I went to the dermatologist and after multiple visits for the same kind of rash he ran blood tests. I recall the dermatologist prescribing a large course of potent antibiotics along with pepto and acid suppressor. It's been so long, but I do recall not going back to him until recently..for another skin rash so it seemed to work for awhile at least. Looking back on my labs which thankfully I still have I see now he ran an h pylori blood test where it showed I was h. Pylori IGM positive. I guess this dermatologist knew his stuff since that was more than 13 years ago. I call him the Russian because... well he's Russian and has a distinct Russian accent. Between 2010-2011 I began to have all kinds of problems, fatigue, nausea, no appetite and generally feeling unwell. I went to my GP and then GI Dr. He ran a bunch of blood tests testing me for all kinds of GI diseases, but no tests for h pylori. When the results came back negative he said there' nothing wrong with you..audios. One year later I came back after losing almost 50lbs. He was shocked and said we need to do an upper and lower GI ASAP. I was not happy and was stressed out about such invasive procedures, but I went a long with it..the bowel prep was the worst experience in my life given how ill I was already feeling. Colon was clean but he found mild antral gastritis and a ulcer in my duodenal bulb. Later he told me that I did not have h pylori or anything else that caused the ulcer and prescribed prilosec. I asked him how long would I be on prilosec and he said however long it took you to get this way (blaming me for doing this to myself). Three years later and I backed off the prilosec about 6 months ago after being diagnosed with osteopenia and numerous vitamin deficiencies, and I began feeling extremely unwell... Over the years I've had tons of tests and labs and scans but nothing else has been found at least that would explain my GI issues. I am fighting to be treated for h pylori now. What is the chance the biopsies he took in 2012 were false negative? He did both an upper and lower gi in the same setting so the biopsies were taken after dousing myself with colon prep. Would that effect biopsies? I guess they could have not run the correct tests on the samples or do some Dr's prefer to put you on medication for years instead of treating infection. I also had a UBT in 2011 after the upper and lower GI procedures and that was negative. Previous to that test I had been taking prilosec which the Dr. only had me off a few days before the breath test. Is it possible this was a false negative as well? Given my past history with positive blood test it seems like they would treat me with AB's to be sure since I went on to develop bleeding duodenal ulcer.

emma frost
Posts: 7
Joined: Wed Jul 08, 2015 9:37 am

Re: Am I a victim of 'Big Pharma'?

Post by emma frost »

I want to clarify why I asked if I was a victim of Big Pharma. I was taking prilosec for almost three years after ulcer diagnosis. Since then I've suffered all kinds of illnesses and symptoms as well as disorders and likely permanent damage due to vitamin and mineral deficiencies. I lost my job 2 years ago as I was too ill to work. The fatigue is debilitating. Ive been treated with vicoden and muscle relaxers for back pain long term which I now believe based on where the pain is located, is actually referred pain and related to the ulcer. As a result of being unable to function normally I was also diagnosed with depression, anxiety and insomnia all of which have been treated with more pills. I've weaned myself off most everything but in the last few days I restarted the prilosec because I'm in so much pain. The pain is under my left rib cage, and my left flank and back. The last few days my stomach was apparently severely inflamed because it hurt so bad. The only way I could raise b12 and vitamin d levels sufficiently was taking it sublingually/injections. I was recently prescribed iron for low iron levels as well so its no wonder I feel so horrible. I feel like if this is h pylori and it's treated and cured my overall health should improve. Since the duodenum is where nutrients are absorbed and that's where my ulcer is it's probably why I'm having so many issues. I've been educating myself because I'm desperate to get well.

Helico_expert
Site Admin
Posts: 4600
Joined: Wed Mar 02, 2011 7:20 am

Re: Am I a victim of 'Big Pharma'?

Post by Helico_expert »

Hello, thank you for sharing your story with us. Just want to make a few comments. I am not sure what your GI doctor tested you when he did endoscopy and concluded that you are negative of H. pylori. Also, it's interesting that people would test IgM for H. pylori. Because I would think it is more common to test IgG or IgA for H. pylori.
IgM has been found to have little diagnostic utility for H. pylori infections and is elevated only acutely after infection, whereas H. pylori infections are generally chronic (8, 18). Here we show that IgM has extremely low sensitivity, confirming its lack of clinical utility in either children or adults.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2725530/


However, in regards to UBT, it is very accurate. So I believe you are free of H. pylori (unless you did not do the UBT test correctly: eg. did not stop PPI while doing the breath test).

So, I think it's worth investigating what gives you the ulcer. Are you a frequent user of NSAIDs, such as ibuprofen, aspirin, voltaren and other non-steroidal anti-inflammatory pain killers? they are responsible for 50% of the stomach ulceration.

emma frost
Posts: 7
Joined: Wed Jul 08, 2015 9:37 am

Re: Am I a victim of 'Big Pharma'?

Post by emma frost »

Thanks so much for responding.

No, I don't take NSAID's. I did take Pepto which I understand contains aspirin?? I did not over medicate with Pepto and it was short term use.

In 2011 when I took the UBT I had been taking Pepto-Bismol for diarrhea. I only took the Pepto about twice a day for a week. I didn't know until 2012 that coffee ground stool can indicate bleeding ulcer(s) so I now know I also had active bleeding from the duodenal bulb ulcer during the UBT as well. Can either of these effect the UBT?

Does colon prep and or active bleeding from ulcer effect biopsies? I had a upper and lower GI in the same setting or same procedure hence I took colon prep prior to upper endoscopy where the ulcer was found.

emma frost
Posts: 7
Joined: Wed Jul 08, 2015 9:37 am

Re: Am I a victim of 'Big Pharma'?

Post by emma frost »

I honestly would not be surprised if I was infected with h pylori. As I child I lived in Holland and traveled all over Europe camping with our family of 8 because we couldn't afford hotels. I recall many campsites literally had holes in the ground for peeing/defecation.

I also spent some time staying in Tijuana Mexico off and on over four years while serving in the USMC as my boyfriend at the time had parents that lived there 6 months out of the year so we vacationed there. I was definitely drinking the water because I guess was stupid. The last time I went to MX before leaving the Marines I developed a bad case of GI problems. I just assumed it was food poisoning or something.

I was also a long distance runner and did what I refer to as Mud Runs where you are covered head to toe in mud.

Helico_expert
Site Admin
Posts: 4600
Joined: Wed Mar 02, 2011 7:20 am

Re: Am I a victim of 'Big Pharma'?

Post by Helico_expert »

For Emma,

i think you need to discuss with your doctor for the reason for developing ulcer if you dont take NSAIDs and you are free of H. pylori. maybe a more detail analysis has to be done to proof that you are indeed carrying H. pylori or other helicobacter species (from animal)?

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