My Story - hoping for some advice

[RubySue78]

Hello All -
I have not yet been diagnosed with CD, but have a lot of the symptoms.
My symptoms started when I was about 8 years old - at least that is when they were significant enough that they are burned in my memory. I used to eat anything and everything. Then milk started to give me terrible stomach aches, followed by fruit of any kind and eventually gluten/wheat. I was about 10 when a barium xray study was done on me with nothing conclusive so I suffered with constant bloating and gas, inflammation weight that I could not get off, random stomach aches to random foods and chronic constipation. About 10 years ago things started to really ramp up, I started to get terrible burning, aching like pain in my lower back, decreased foods that I could eat that did not cause issues with stomach pain for days, worsening constipation, gas (bad horrible gas) bloating to the point of looking 6 months pregnant in just a couple of hours, gaining 5 to 8 pounds in inflammation weight overnight, dry eyes, reynaulds in my hands and feet, pre-diabetes, high calprotectin in stools and low secretory Iga. I also have pelvic congestion syndrome - but that is due to my gallbladder pressing on the right side of my pelvis vein. Ive been to the ER 3 times in the past year and was told I have gastritis after running tests on my gallbladder (this includes an ultrasound) liver, and pancreas. Diverculitis was ruled out as well. I have been to so many doctors, ran $1000's in tests, found out that I have Lymes disease, I do have HSV2, did have an EBV infection but no longer active, actuve chlamydia pneumoniae. I have had 2 endoscopies and 2 colonoscopies - both endoscopies showed significant inflammation. Tested negative for celiac and one doctor told me that I needed to stop taking Ibproferin of which I was not taking at all. THe second endo was just done yesterday. Was told that I have again significant inflammation but testing for H.Pylori even though I have already tested negative for that. Colonoscopy from 2016 showed a perfectly healthy colon, same yesterday. My stomach is always on fire unless I take a ton of marshmallow root capsules and drink aloe vera water. this pain will radiate on both sides of my lower abdomen and my bellybutton gets very tender and red, the pain also radiates up my midback. I get horrible fatigue to the point I cannot keep my eyes open - this happens at random times, when driving, reading, at church or even walking. the fatigue feels like my whole body is super heavy. I feel like I have to pee all the time due to the pressure on my bladder, the constant nagging arthritis like pain in my back gets to the point of not being able to walk or sit for longer than 20 minutes at a time. I have to take 900 to 1000 mg of magnesium citrate nightly in order to poop daily otherwise I am constipated for days at a time. My motility is very slow, 48 hours. It took 7 hours for the Colyte to work! I was very scared I had an obstruction.
I am Dairy, Nut, Soy, Corn, Grains, Pork, Egg, Sugar, Fruit free. I only eat/tolerate grass fed beef, chicken, rabbit, butternut squash, kabocha squash, pumpkin, dessicated coconut flour, chia seed flour, pyslium husk. Occassionally I can get away with eating a can of sardines or smoke oysters. I fast for 15 to 17 hours per day then another 5 to 6 hours between my 2 meals. This has helped my stomach some, but now it just doesnt matter. This new doctor wants to do a pill cam next, I just want to know what the problem is and how to help myself. I do take supplements that have helped such as milk thistle as my liver enzymes are always elevated and my WBC is always low. My 21 year old son has got the same symptoms and my 12 year old daughter is also struggling with some of the same symptoms. If she eats more than 9 grams a day of sugar her guts get so inflammed poop does not move it just sits. This is craziness. Everything I have read and studied points to Crohns... Am I barking up the wrong tree? This has been a long 30+ year search for answers...
Would appreciate any feedback....

 

[SN8888]

Have you had your ANA checked? Autoimmune connective tissue diseases can look like IBD (lupus, MCTD, etc). Raynaud’s and dry eyes, dry mouth go along with some of those diseases. There’s often significant joint pain, esp in the hands.

 

[RubySue78]

Have you had your ANA checked? Autoimmune connective tissue diseases can look like IBD (lupus, MCTD, etc). Raynaud’s and dry eyes, dry mouth go along with some of those diseases. There’s often significant joint pain, esp in the hands.

I do have Reynauds disease, but have tested negative for Lupus via the ANA test.

 

[Scipio]

I would do the capsule camera endoscopy that your doc wants to do. That's how my Crohn's was finally diagnosed - they spotted aphthous ulcers in the small bowel that had escaped detection by either colonoscopy or upper endoscopy.

Have you had a CRP blood test? If so, what did it show?

 

[RubySue78]

I would do the capsule camera endoscopy that your doc wants to do. That's how my Crohn's was finally diagnosed - they spotted aphthous ulcers in the small bowel that had escaped detection by either colonoscopy or upper endoscopy.

Have you had a CRP blood test? If so, what did it show?

I had CRP tested 7/2016 - it has not been retested as I was able to start to get it to go down from its original level of 1.5 (range 1.0 to 2.9) down to .5. I cut out a lot of foods that were causing issues and started to follow a Ketogenic type of diet, BUT with more veggies as I cannot tolerate a ton of fat.

 

[Scipio]

A CRP of 1.5 is already well down in the negative range, so moving from 1.5 to 0.5 may well just be "background noise" in the test more than any real or meaningful biological decrease in inflammation.

 

[D Bergy]

I have a few thoughts on your condition but not time right now to post it.

One of your problems is likely related to the article

https://articles.mercola.com/sites/articles/archive/2019/11/10/oxalic-toxicity.aspx
Dan

 

[RubySue78]

I have a few thoughts on your condition but not time right now to post it.

One of your problems is likely related to the article

https://articles.mercola.com/sites/articles/archive/2019/11/10/oxalic-toxicity.aspx
Dan

Thank you for the feedback, unfortuantely I do not eat foods that are super high in Oxylates - minus sweet potoates of which I eat 2 ounces a day - that is not enough to raise levels. Thanks again though

 

[D Bergy]

There are enough symptoms there of an H-Pylori infection that I would treat for one.

A negative test doesn’t prove you don’t have the infection. They can only prove you do have one. Been down that road. chronic burning stomach.

Both Manuka Honey and Black Seed Oil inhibit H-Pylori. Using one or both would be a fairly easy way to tell if that is causing stomach problems.

Dan

 

[RubySue78]

There are enough symptoms there of an H-Pylori infection that I would treat for one.

A negative test doesn’t prove you don’t have the infection. They can only prove you do have one. Been down that road. chronic burning stomach.

Both Manuka Honey and Black Seed Oil inhibit H-Pylori. Using one or both would be a fairly easy way to tell if that is causing stomach problems.

Dan

Dan I cannot do any honey but did try the Black Seed oil - it caused such horrible bloating I had to stop. I started with a 1/4 of a tsp. The Endoscopy Biopsy came back negative for H-pylori.
I also tried mastic gum, it gave me the worst stomach ache, I stuck with it for 2 weeks but stomach aches got progressively worse and no difference in symptoms

 

[D Bergy]

My biopsy came back negative for H-Pylori also. Nonetheless I had plenty of it. Mostly in my intestinal tract but some in my stomach also.

Did you ever get adequate treatment for your lyme disease? My wife had that and two coinfections. Babesia and Bartonella. That can really cause a lot of problems.

Dan

 

[D Bergy]

I associate fatigue with a chronic mycoplasma infection. Thats one I am still battling with. By fatigue I mean utter physical exhaustion doing normal things I can typically easily do.

There are certainly many possible causes for fatigue but that one is often overlooked.

if you have had several bouts of pneumonia in the past, I would suspect it more.

Dan

 

[RubySue78]

My biopsy came back negative for H-Pylori also. Nonetheless I had plenty of it. Mostly in my intestinal tract but some in my stomach also.

Did you ever get adequate treatment for your lyme disease? My wife had that and two coinfections. Babesia and Bartonella. That can really cause a lot of problems.

Dan

Dan - how did you find out that you did in fact H-Pylori in your intestinal tract and stomach? How did you treat it? Doctor thinks I have had Lymes disease for years, have done what treatment I can. I use LDN for the nerve pain

 

[D Bergy]

I use and test several alternative treatments. It all started years ago when my wife contracted lyme from an imbedded deer tick. She had all the symptoms but did not produce a positive test at that time. She was sicker every week it went on.

At that point I was forced to find out how to treat her myself without access to any pharmaceuticals. Long story short, she is fine today.

That rather lengthy and educational experience taught me how to treat my disease as well although it took some years to figure out what specifically to treat.

Early on even before my Crohn’s diagnosis, I developed a stricture in my intestine. That caused my food to back up in my stomach and initially I just took antacids not knowing any better. Eventually, I developed a burning pain in my stomach lining. It was non stop burning. I went to the doctor several times. Another H-Pylori test another negative result and a new acid blocker. They never helped much. One made it worse.

All along, I was treating myself with the same method that I treated my wife’s Lyme disease with. I used what is considered a quack treatment nowadays. A Rife device. The device can output specific frequencies that damage or in some cases outright destroy specific pathogens.

I continued to research pathogens that could cause stomach pain. There were a few possibilities but not really all that many. I didn’t treat H-Pylori because the multiple tests were all negative. I did treat for several others. They did not help at all.

Finally, I really only had H-Pylori left on my list.
I ran the specific frequency of 676 Hertz for five or ten minutes, don’t recall the exact time. As I ran the frequency my pain went away. It was quite astonishing as that was quite unprecedented for a response in my experience at that time. That relief lasted around 14 hours and then it came back again.

I did some more research on treating H-Pylori using this method and found out it has to be treated at least five days in a row to eliminate it entirely. I treated a full week or so and that was the end of the stomach pain. That was several years ago.

About three years ago I realized I had never treated H-Pylori longer than ten minutes. Previous experience taught me that longer run times sometimes are necessary to kill pathogens deeper in the body. I was still having Crohns symptoms and I was trying to find what pathogens were responsible for my symptoms.

I reasoned that it was possible that I might have only eliminated it in my stomach because it was a very hostile environment to begin with. Probably would be far easier to eliminate it in the stomach than in the intestinal tract. So I proceeded to test my hypothesis.

I ran 676 Hertz for twenty minutes. I was fairly sure that would do the job. Felt nothing at the time. Kind of forgot about it and went to work my twelve hour nightshift. About 4:30 in the morning my whole intestinal tract felt like it was on fire. Never felt anything close to that sensation before or since. I would drink some water and it felt like I was drinking drain cleaner. At first I really didn’t know what to make of it. Then I remembered the earlier treatment and things fell into place. I left work early as I didn’t know if it would get even worse or what I was in for. Luckily, it didn’t get worse. I laid on the couch for a couple of hours and the pain slowly went away and I fell asleep.

when I woke up I could feel my guts were a little touchy yet but not burning. I waited a couple of days and decided to try it again.
If it killed most or all of it, I should have no problems. Of course if it was just strictly a bad response to the treatment, I would be in bad pain again. I learn by doing so I proceeded to test to out.

I had a slight amount of pain later on but not anything like before. I treated several more days and that was the end of it. My condition improved some but still not 100% so my search went on.

Believe it or not, thats the short version.

Dan