This is topic Drinking Budesonide for Eosinophilic esophagisitis - Is this steroid absorbed? in forum Medical Questions at LymeNet Flash.


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Posted by bcerq (Member # 24043) on :
 
I have chronic lyme along with Eosinophilic

esophagitis. My gastro doc has prescribed

drinking (inhaled steroid) benosnide .5 mg four

times a day with 10 packets of splenda..

I just went for my second endoscopy and

after two months of drinking these steroids I

still have the Eosinphilic esphagitis.

My gatro doctor insists that buedesonide is not

absorbed into the body and will not negatively

affect my lyme.

Is this true? He said it should not affect my

lyme in any way!!??


My ID doctor is telling me that this is absorbed

and will not remove me from IV antibiotics until

I am not longer taking bedesonide.

I don't know which way to turn?

Is anyone aware of a gastro doctor that is

familiar with Eosinphilic esphagitis, and lyme

in morris county, nj??


Would appreciate any help or recommendations!!

Thank you!!
 
Posted by Lymetoo (Member # 743) on :
 
Just guessing, but I would say it IS absorbed. For once, an ID doctor knows something.

I sure hope you can find a good LLMD and a good GI doctor!!

Splenda? That's almost as bad as the steroid!
 
Posted by Keebler (Member # 12673) on :
 
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Yes, indeed, it will be absorbed. Even taking antibiotics, I would NOT take the steroids.

AVOID splenda.. That's really bad stuff for us.

I'll be back later but you can bet that I'll have LOTS of other suggestions that are far safer.
-
 
Posted by Keebler (Member # 12673) on :
 
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Steroids can stay in the body for up to six months after the last dose, too.

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/100984?#000000

Topic: what do STEROIDS actually do to those with lyme?


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=123939;p=0

Topic: Minor surgery and steriods - complications from steroids that were not supposed to be administered.
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Posted by Keebler (Member # 12673) on :
 
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Are you Gluten-Free? Dairy-Free? GMO-free? Why that matters for the entire GI system:


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=029690;p=0

Excitotoxins; MSG; Aspartame; & "Natural" Flavors;

GMO foods that destroy the GI Tract; Gluten; Dairy.


http://www.womentowomen.com/healthyweight/splenda.aspx

Sugar substitutes and the potential danger of Splenda

- by Marcelle Pick, OB/GYN NP
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Posted by Keebler (Member # 12673) on :
 
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From good sources, STEVIA (from a plant) is safe. Not all brands are pure, though, even if they say they are. It can be a bit of work figuring out which are okay. Here's a start:


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=118716;p=0

Topic: Suggestions for hot breakfast cereal?

STEVIA link here
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Posted by Keebler (Member # 12673) on :
 
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HAVE YOU BEEN TESTED FOR H. PYLORI ?

------------

I may be able to think of some things to help the Eosinophilic esophagitis. I'll list a few that come to mind but am really toast right now (guess that would be gluten-free toast, eh).

SLIPPERY ELM, MARSHMALLOW ROOT, DGL (find it with a search of Licorice)

Diet -- I mentioned some things above. I assume you are also avoided all carbonated beverages, even if just fizzy water. Carbonation is dangerous.

I also assume you avoid coffee and alcohol.

Your LLMD and a LL ND would make the best duo to offer you safe choices:


http://flash.lymenet.org/ubb/ultimatebb.php/topic/2/13964

How to find an ILADS-educated LL:

N.D. (Naturopathic Doctor);

L.Ac. (Acupuncturist);

D.Ay. (Doctor of Ayurvedic Medicine);

D.O.M. (Doctor of Oriental Medicine);

Integrative / Holistic M.D., etc. (Be aware that those in this category can have various levels of formal herbal &/or nutritional education, perhaps even just a short course. Do ask first.)

Links to many articles and books by holistic-minded LL doctors of various degrees . . . .
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Posted by bcerq (Member # 24043) on :
 
Appreciate everyone's feedback..Since

Eosinphilic esphagitis is usually allergy

related.. I went to see an allergist at

Mount Sinai, NY that my ID recommended last week.


She looked at all of the meds and complications

that i have due to lyme and said that should

could not help me.. She wanted me to come back

and see another doctor..


Once you say you have lyme.. No one wants to

treat you!! Lyme needs more money for research

so these doctor's can be educated. It's so

frustrating!!
 
Posted by bcerq (Member # 24043) on :
 
Thanks Keebler!!.. Appreciate the information

you provided!!
 
Posted by Keebler (Member # 12673) on :
 
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I know they say EE is usually allergy related but I think they are missing some of the pieces. Still the immune system can go bonkers with lyme.

It sounds like you don't have a LLMD right now but an ID doctor that seems to be a bit wiser than most.

This can be lyme related, of course, for many reasons (one being lyme clobbers immune functions) . . . still, there may be other puzzle pieces to look at today.

Have they done celiac tests? Biopsies and genetic blood work (other tests can fail but the genetic blood test is better)?

The first two questions are whether you are gluten-free and diary-free?

And off all GMO foods (see the film "GMO ROULETTE" and that explains why this is so important. See what GMOs can do to the inside of the whole GI tract).

From a quick search, one note of hope:

http://www.celiaccentral.org/personal-stories/matthews-story/

Matthew's Story - from Celiac Central

but it found over 50 eosinophils per HPF in my mid and distal esophagus. I was diagnosed with eosinophilic esophagitis and it was thought I may have celiac. . . .

. . . With the findings of the EGD, the gluten intolerance and the genetic positive gene (DQ8), my doctor diagnosed me recently with celiac disease, as well as the eosinophilic esophagitis. I have been off gluten for the past 3 weeks again, and have been feeling great for about a week. . . . .

As of now, gluten has been the main culprit to my problems (other than chocolate, which is causing some of the eosinophilic esophagitis). . . .
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Posted by bcerq (Member # 24043) on :
 
Keebler, I am not sure if I have been tested for

the H. PYLORI..

It's scary how much the symptoms match what I

have been experiencing.. Is that done by the

endoscopy biopsy or bloodwork??
 
Posted by Keebler (Member # 12673) on :
 
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I'm not sure about H. Pylori testing.

I have to stop now but, please, try to turn the fear into a sense of nurturing. Yes, it's complicated and scary. Still, try to relax and focus on what can help for now.

If we know that you are or are not GF or diary free, though, that could save time in the replies. Not judging but also just wondering where to look. If you've got those bases covered, we can move on to the next square.

If you are GF, there are many places gluten hids and maybe some is sneaking in by mistake.

I hope others will have some good ideas. Take care.
-
 
Posted by Keebler (Member # 12673) on :
 
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Anti-inflammatories --- of the antioxidant kind (not Rx because many, including NSAIDS, can cause GI & esophagus ulcers. Aspririn can, too).

Acetaminophen can cause more inflamation as it blocks glutathione from ALL cells and makes the liver more stressed. A stressed liver will surely affect the esophagus, too.


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=030792;p=0

LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.


http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/115258?

ASTAXANTHIN - to help calm inflammation


http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/119968

Medical Mushrooms - for immune support


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=031228;p=0

STINGING NETTLE - Links set

The herb, STINGING NETTLE may serve to compensate for the reaction by calming the the cytokine storm that is often part of a herx reaction.

Best if you can find a LL ND to guide adjunct methods, of course.
-
 
Posted by Lymetoo (Member # 743) on :
 
quote:
Originally posted by bcerq:

the H. PYLORI..

It's scary how much the symptoms match what I

have been experiencing.. Is that done by the

endoscopy biopsy or bloodwork??

-
Pretty sure it is by endoscopic biopsy, but it can be missed.
 
Posted by Razzle (Member # 30398) on :
 
EE may have an autoimmune component as well, depending on the patient.

H. Pylori can mimic the symptoms, or should I say, EE can mimic the symptoms of H. Pylori, so H. Pylori is a good one to rule out.

A breath test for H. Pylori is most accurate (blood tests look for antibodies, and once positive, will always be positive and so a current infection cannot be detected this way).

Biopsy can miss H. Pylori.

Budesonide is about 10-20% absorbed. My DH was on this for his EE/EG but he used xylitol instead of Splenda.

Agree that Splenda is bad - the packets are mostly maltodextrin, which is guaranteed to cause Candida.

Candida in the esophagus can also cause eosinophilic inflammation, so that would be something else to rule out...

Anyway, perhaps Singulair or Ketotifen may be alternatives to try for the EE?

Also, I agree with the others recommending a GMO-free, Gluten-free diet. Research suggests that GMO foods are more likely to cause or worsen allergies to those foods.

Research also suggests some common foods that seem to be involved with aggravating EE. Wheat/Gluten, Dairy, Soy, Corn, and many others seem to come up frequently as potential culprits.

Might ask Children's Hospital of Philadelphia's Eosinophil clinic who they recommend for adult EE patients... http://www.chop.edu/service/center-for-pediatric-eosinophilic-disorders/

Just because a person with EE does not test positive on allergy tests for any foods, does not mean foods are not involved with their EE. Many times, an elimination diet will reveal at least some potential aggravating foods.

For more info on Eosinophilic GI Disorders, see http://www.apfed.org/
 
Posted by n.northernlights (Member # 17934) on :
 
I thought they diagnose H.pylory by breath test, a rapid type test in the doctor�s office.
All Germans are routinely tested for H.pylori I think.

I know from the celiac forums that ee is somewhat related to celiac, but it is more allergy related. Usually the treatment is to avoid the particular offending foodstuff. I have seen postings by parents who had to remove a long list of food items for their child.

It is hard to comment if you do not mention what foods you totally avoid already.

I have had something close to ee because of my gluten intolerance and milk allergy, but no diagnosis
 
Posted by Judie (Member # 38323) on :
 
I had h. pylori last year.

I had both a stool test a blood test during the same week.

Stool test was negative, but the blood test had high titers and I was DEFINITELY positive.

I know someone where it took 20 years to get a proper diagnosis for H. Pylori. She said the best way is through a breath test.
 


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