IBS or motility disorder

[Margot49]

I have not been well for about 5 years but over a year ago, started having major GI problems.  Lots of tests done.  GI doc here diagnosed IBS.  Every med he gave me I had problems with, either a reaction or feeling worse.  He referred me to a specialist in motility.  They did a test, said I had a motility problem (can't remember if it is fast or slow) and wanted me on Prozac and a BP med.  My Internist here said  no BP med as my BP is low as it is.  Went to Stanford for a second opinion. That GI doc said she didn't feel the motility issue was that bad (she trained under the first one) and prescribed Lactolace (? I don't recall), ginger and honey for nausea and acupuncture and a seizure medication.  My Internist or acupuncture did not like the idea of that or the possible side effects so I never took that.  The Lactolase seemed to bother me.  My GI here had finally done a breath test and I was treated twice with Xifaxan for SIBO. The first specialist said he would not have treated me for that.  GI doc at Stanford wanted to do a 24 hour bile test (like the PH test) they only do at Stanford. Husband refuses to take me back as it is a few hours away from us and he is tired of this.  It would have meant staying there or going two days in a row.  I seemed to be better for a while but about 2 weeks ago, started with the nausea and bloating again.  My GI doc here has pretty much given up on me but he did prescribe the Xifaxan again for possible SIBO, no breath test done now, right before Thanksgiving. I am on my third day of the Xifaxan.  I was horribly 2 days ago with nausea, a lot of pain, bloating and was in bed all day. Was going to go to Urgent Care  but they basically do nothing.  Not too bad yesterday but am getting sick again today.  I am basically trying the ginger and honey in water, Pepto Bismol, Gas X and Alprazolam.  
I don't know if I have SIBO, IBS or something else.  Is this going to be a live long problem?  If so, I can't tolerate this and can't find a doctor in our area that seems to know what they are doing.  
Do I eat? Don't I eat?  I just tried to eat some Gluten Free cereal with Lactaid milk.
Now what????   I just feel abandoned.

[Margot49]

This is great. Did a search and Dr Chutkan was actually on the Dr. Oz show.
Here are two links, the later is a 3 part video of him speaking with her.

http://www.doctoroz.com/videos/could-leaky-gut-be-troubling-you

http://www.doctoroz.com/episode/disease-your-doctor-cant-diagnose

If you click on her name above, it gives a link to her contact info also

[Margot49]

Hi Niko,

Not sure what the pills were, some Chinese herbal stuff in capsules.  Was afraid to try them as I seem to have so many problems with most anything!  I do use the crystallized ginger and honey for nausea and trying to cut down on the Pepto but had to use once yesterday and this morning.

I have another breath test for SIBO this Thursday as it was not done prior to the last course of Xifaxan in early Dec.  I ask so have that PH impedance study on the 29th (long story but if this doctor is not doing the test Stanfird wants done, I will file a formal complaint!). I am going to have a problem as I can't take the Pepto, Pepcid or ant anti acids 3-5 days before the test.  I have nothing else to control my nausea, stomach pain, etc!!!

Sometimes I feel like this Valley is a third world country.  Wish one of my doctors could do a referral but none of them are even receptive to alternative medicine.  I will try to do more looking around to see if I can find someone relatively close.
Thanks

[TheLightSeeker]

Margot,  your condition and your symptoms have taken the better of you.

It is not your fault that your reliance on the medical system has resulted in
the continued deterioration of your health, however, there's a time when one reaches a critical low level of physical, emotional and mental wellness,
where it may trigger an awakening, a revolt of sorts to take some drastic action in order to to turn things around, make serious changes and get off this dangerous medical merry-go-round.

I understood that you already had a breath test for SIBO and afterwards you were prescribed Xifaxan by your Gastro-Interologist for it.

May I ask what where the herbal pills & why were you afraid to take them,
since you have taken many prescription medications (most of them have not helped you and may have even caused worsening of your symptoms,
according to you)?

Margot, I'm just attempting to make some sense of things here, but I feel
It is becoming a true challenge for you and it's best if  your health matters are left with a competent Health Professional ,such as an ND or Functional Medicine doctor.
Central Valley is a large region and within this region there are at least 10 different Metropolitan areas. There must be a number of NDs within a close proximity to where you live.
You can do skype after the 1st consultation with most NDs,
if  driving/travelling is an issue.

Best wishes
Niko

[Margot49]

I am scheduled for the breath test this week.
I am scheduled for the 24-hr Esophageal impedance test on the 29th, that should measure the acid.  Doc told me I have to be off the Pepto and Pepcid for 3-5 days.  Didn't take any yesterday or this morning and am having stomach problems and nausea.  I have nothing else to take!  Don't know how I can do this.
I looked up ND doctors here and only acupuncture doctors come up and I already see two.  One, that I can barely understand gave me some herbal pills fir my stomach but I am afraid to take them.

[TheLightSeeker]

Margot, I do feel for you.

An ND is a Naturopathic Doctor, one who views the entire body as an integration of inter-dependent systems and organs, treating the person
as a whole and not  treating only certain parts, organs or just symptoms.
Using scientific and traditional methods they look at the root causes of disease processes and  implement various Natural therapies, to help the patient rebalance their health.

What I'm attempting to tell you is that most of your treatments are WRONG and by continuing with your existing treatments and medications you will probably continue getting worse! That is my opinion in a capsule.

Please consider to print my previous replies and find yourself a Naturopathic Doctor, show them your copies along with all of your medical history, tests and meds -you have to pay out of pocket, but they are worth every penny you spend, if they are reputable. And the cost is not
by any means extravagant.

Wishing you well and God Bess!
Niko

[Margot49]

I have read and read but just go in circles.  I have read some on leaky gut but will heck that one out

I am scheduled for the breath test on the 9th to check for SIBO.  I was treated months ago and was on Xifaxan again in late November.

After me having to call doctors here and Stanford (another long story) I am scheduled for the 24 hr PH impedance test on the 29th that the doctor at Stanford wanted done months ago!  Said it could only be done there, which is difficult former to do due to distance etc. they said if I could find some place here that could do it, fine.  Another long story and 10 phone calls and one hospital said they do it.  Then my GI doc, who is not at that hospital, all of a sudden says he can do it!!  I stressed to him it is the impedance test and he said he knew that.  So why didn't he say that months ago??  I discussed this with him.  He even knows the doctor I saw an Stanford but has never contacted her.  I am so mad!!  
Yes, I am sure I have a "reputation" at Gould now and no use trying to see another GI in that office.  We are short of specialists here and good doctors in general.  My old doctors back home were wonderful as I needed a few surgeries and they all actually talked to each other regarding my care.  This is a damn nightmare.

I was sick all day again today and have been taking one thing or another all day.

What is an ND?  Nutritionist?  Sorry, it is late and you may have mentioned that earlier.

Yes, all this Pepto is getting to me.  I have problems with meds as it is but it is about all I have that gives me any relief.  I started the Pepcid also and Gas-X today and my Xanax and the ginger and honey.  

Another long story but Stanford was having a hard time getting a copy of the motility study I had done by that other doctor in the Bay Area .  I requested they fax it, Stanford requested it twice, I got a copy from Gould, who never faxed it either and faxed it myself, 11 pages but Stanford couldn't find it!!  They called today and I think they finally found the one I sent.  I want that doctor to review it and get her opinion on the test results.  She actually did some training under the doctor that did it as my doctor here did, that's how he knows her.  
Really, this is a damn nightmare I just can't wake up from.
Go for acupuncture tomorrow.  It did help with the nausea some months ago but not so much now and I do have an excellent doctor for that.
Thanks again.  Wish I understood more of what you are trying to explain.

[TheLightSeeker]

Obviously if your doctors' careers depended on the results they produced,
and they way they treat you, they would be probably practicing  something else other than medicine! Lol!

The problem is that you have become too reliant on the conventional medical
system, suffering the consequences and without being able to break away.
You may have also been unofficially labelled as a "problematic" patient.
The suspicion you have about this, may hold some validity.

Please do not try to approach your doctor(s) with possibilities that are outside their "established" protocols and procedures.
When you're dealing with doctors who lack forward thinking, you're inviting controversy, which plays against you in the end.

Most serious chronic disease happens over time at sub-clinical levels, so conventional testing, which is designed mainly around statistical and mathematical models, totally ignores this, until it becomes a crisis,
too little too late for most sufferers!

Wishing you well.
Niko

[Margot49]

I tried to talk to my GI doc about this and he was not receptive.  In pain and nauseated this morning.  He just says if I am in pain, go to the ER.  I have run out of doctors.  Already taken 4 meds this morning before 9:00.  I had tried some time ago to talk to my Endo doc but she said there is not an adrenal problem.

[TheLightSeeker]

Hey Margo, sorry about your ongoing issues.

So, your high score indicated likely adrenal fatigue, which is consistent with your chronic stress from what you're going through and by now your adrenals must be totally out of balance.
On top of this your saliva test indicated that you have a Candida yeast infection, which if indeed present in your body has probably contributed to
Leaky Gut Syndrome (increased intestinal permeability)
Some conditions linked to LGS are:
Acne, Asthma, Arthritis, Autism, Autoimmune diseases, Cancer, Candidiasis, Celiac disease, Chronic Fatigue Syndrome, Crohn’s disease, Cystic Fibrosis, Dermatitis, Eczema, Fibromyalgia, Food Allergies, Hives, Inflammatory Bowel Disease, Irritable Bowel Syndrome, Multiple Chemical Sensitivities, Multiple Sclerosis, Malnutrition, Ulcerative Colitis and more!

There's an interesting article "Could Leaky Gut Be What’s Troubling You?"
By Robynne K. Chutkan, MD, FASGE Assistant Professor of Medicine, Georgetown University Hospital Founder and Medical Director, Digestive Center for Women.
I recommend you read it.

If you continue doing what your doing at present, unfortunately you will not get out of your downward spiral.
Continuous treatment with Pepto Bismol, is not only ludicrous, but is also contra-indicated as a long term treatment. I already mentioned this to you
in a previous reply.

Did you check and verify that you have high gastric acid levels-which would justify the anti-acids and PPI meds, you've been taking?
GERD symptoms are almost identical for high OR low gastric acid.
If low acid, those meds will only make your problems much worse.
You MUST rule this out!!!  We already "talked" about this too!

Sorry, I don't mean to sound like a broken record, but you must look into these suggestions seriously and seek a competent ND to help you.

I really hope that you will able to address the underlying issues in the New Year and start recovering, before your body suffers from some potentially irreversible damage that would lead to chronic and incurable conditions.

Many Blessings.
Niko

  

[Margot49]

Thank you.  I barely made it through Christmas. Was very sick yesterday with nausea, bloating, pain.  Took everything I have here.  Sick again this morning.  Not getting better.  My GI doc told me a week ago to take Pepto Bismol and Pepcid and I take Align.  No help.  I am sick!!

[Paderla Anitha, DNB]

Hi, I understand what you are going through and the specialists are differing in their opinions. But all of them agree that there is no major problem. What I suggest is to develop good lifestyle measures, they will definitely regulate the bowel, and your symptoms should get controlled. Start with small appetizing meals, like a fresh healthy soup and built up slowly and gradually, eat fresh and include steamed vegetables and fresh fruits regularly in your diet. Also, ensure to have organic yogurt with every meal. Hopefully this helps. Do take care.