hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hello Lyme fighters,
Have any of you consulted a dietician for the food intolerances that develop secondary to this infection?
It's difficult to eat when eggs, dairy products, wheat, gluten, brown rice, and peanut butter cause stomach pain.
It's almost impossible to get in 130 mg protein with these intolerances.
Protein powder made into a smoothie also causes stomach pain...all 3 kinds that have been tried...soy, whey, and brown rice protein powder.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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posted
Hubby's LLMD is also a nutritionist and his herbalist also has a nutrition degree.
Many protein powders have added amino acids and vitamins -- could be the glutamine or some other additive that is the problem.
Hubby also must eat gluten free and casein free (milk protein) and has intolerances to soy and egg whites (can eat egg yolks). Fortunately rice and peanut butter are ok for him.
Was just at the Vitamin Shoppe a couple of days ago -- they have Hemp protein powder and also one made from peas. Might try one of those instead.
In the past hubby tried a meal replacement protein powder which many alternative docs offer called ultrameal -- but I think that is rice based.
Send me a pm if you want the info on his herbalist -- she just moved to a different office. After the 1st in person visit she will do phone consults -- very reasonable rates.
Hubby just added back quercetin to his supplements -- LLMD says it is hard to absorb and the brand is very important. Quercetin is a natural antihistamine which should help with food reactions.
The herbalist has helped me refine the recipe for hubby's "slime-tea" that he drinks before eating. Has licorice root powder, slippery elm powder, marshmallow powder, ground flaxseed and a couple of other things.
We had been hoping that Bart treatment would resolve hubby's G.I. problems, but not making much headway as fast as we would like. Hubby lost another 5 pounds last month and LLMD thinks it is because he has so much overall inflammation that his metabolism is increased.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Those are a lot of food intolerances...
Have you ever been tested for enterovirus, either via serum antibody tests, or tissue testing?
I had lyme (at one point). It now looks like I have other pathogens that have reactivated...enterovirus being one of those pathogens. And yes, I have GI issues...
Something to consider..
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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At one point my daughter was hospitalized and on TPN (iv nutrition) because she lost too much weight due to not wanting to eat because it caused stomach pain and nausea.
We did have consultations with two dieticians in the hospital. At first I didn't think they understood the problem, but with persistance of asking questions, I finally learned something.
I was worried that the protein shakes and most all foods were not tolerated either, and did not want to come back to the hospital anymore!! One solution we found was Carnation Instant Breakfast. Two a day give you all the protein you need. Even before lyme my daughter did not like much dairy so I was surprised she would sip on the CIB drinks. Most days she could finish at least one!
I tried to supplement the rest with experimenting with the magic bullet. Much of her pain was from foods that were hard to digest. I learned about diets for gastroparesis and that helped.
I found that many health care professionals are not knowledgeable about stomach pain caused by eating. Luckily my daughter ended up being diagnosed with gastroparesis and is in a NIH study on that now. The Dr we saw Rx a drug not available in the US that is easy to get on the internet. I think it is mainly for nausea though. Taking pain meds before eating was helpful sometimes.
Good news! the symptoms have eased now after finishing 7 months IV ABX. Still have some stomach pain with eating, but no where as much. BTW, the worst stomach pain was actually while on IV abx. I think it was a herx! And we think it was from bart! Been off abx for bart for one month so far OK.
Good luck, Keep experimenting and listening to your "gut" instincts. Pun intended!
MommaK
Good luck!
Posts: 242 | From Mississippi | Registered: Oct 2006
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
I second Bea's Herbalist/nutritionist recommendation. She is very smart and extremely well versed in Lyme.
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hi everyone, I appreciate your time to answer my question.
Bea, it's good to hear from you. Where is this nutritionist and herbalist? I saw hemp protein powder, but bought the other 3....I never dreamed none of the 3 would be tolerable.
I have quercetin on hand.
Timaca, I don't think there have been any tests for enterovirus....but the other symptoms are viral in nature.
MammaK, I think CIB is a dairy product so that probably won't work here.
I'll have to look into a diet for gastritis.
Bart is still a major issue; mycoplasma was found with a PCR test on biopsy samples from the stomach and small intestine.
I wonder if H. pylori could still be a factor in this puzzle?? Is it difficult to eradicate with the standard Z-pack and flagyl?
H. pylori was diagnosed before Lyme. It was the first treatment; the massive herx confirmed my suspicions that this is Lyme.
...or reflux??
robi, thank you for the 'second' on the herbalist/nutritionist recommendation.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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Mom -- Tried to send you a pm but your mailbox is full.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hi Bea,
I have room for a message now.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
hshbmom~
Perhaps mycoplasma and H. pylori could be the cause of the food intolerances???? Those would be logical places to look, since a diagnosis has already occured for those pathogens.
Should you wish to investigate enterovirus....
There are blood testes (serum) that you can do for enterovirus. However, it is possible to test positive in the tissue for it and negative in the serum.
If a gastric biopsy has been done, then testing could be done on that tissue. Or you could run lab tests on the serum.
Dr. Chia is one expert on enterovirus. Google search him and enterovirus will give you some articles. He likes to use LabCorp for blood testing.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
I have been vomiting for nine weeks with repeat ER trips. Am under a gastroenterologist care with lots of testing. Zofran 8mg half an hour before I eat, has kept me from vomiting. I still don't tolerate food except a banana and one egg besides water and that is WITH Zofran. We are checking into multiple sensitivities to food and environment, as I am on toxic overload and reacting to everything from synthetics to plastics, odors, all foods, etc.
-------------------- Else Posts: 82 | From Florida | Registered: Aug 2007
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The G.I. panel from Diagnostechs is a very good test for food intolerances (the most common ones) and also for G.I. parasites. I think the test cost hubby $235 and insurance paid some on it.
The Diagnostechs lab uses both stool tests and saliva testing for parasites. In my opinion this test finds many parasites that are missed by Great Smokies (now Genova) or other labs.
Test also includes markers for candida.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Thanks so very much, Bea. You are a world of help and information. The GI panel will be on my TO-DO list and I will discuss it with my GI doc. You are so appreciated, thanks!
-------------------- Else Posts: 82 | From Florida | Registered: Aug 2007
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Bea, your box is full too.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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