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#1 ljf

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Posted 11 December 2013 - 10:44 AM

My doctor told me to eat more fiber and drink more water for my constipation.

Can you tell me if supplements are safe and effective ?

I am talking about Benefiber and products which contain psyllium.

( I read psyllium can be constipating for a person with parkinsons)

Is there a point where the bowel gives an indication that no more fiber is necessary?



#2 Kathrynne Holden, MS

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Posted 13 December 2013 - 06:15 PM

Yes, Benefiber is very good. Psyllium is very helpful for many folks with PD; but it MUST be taken with a full glass of water. If not, it can begin to soak up water from the intestines and cause an impaction.

 

Far better, and safer, though, is to get your fiber from foods  -- whole-grain breakfast cereal and toast, cooked dried beans, split peas, and lentils (such as baked beans, split pea soup, refried beans, black beans and rice); fresh vegetables, nuts, and fruits; figs, pears, raw nuts (walnuts, Brazil nuts, pecans, filberts, almonds); spinach and other greens, beets.

 

And it's definitely important to drink plenty of water, to keep the stool soft and bulky and assist the fiber in doing its work. Water, fruit juice, and even coffee and tea -- though these should not be the entire day's fluid intake -- all count toward fluids.

 

The bowel indicates sufficient fiber when you have a soft, formed stool -- ideally every day, but at least every 2-3 days. When constipation is no longer present, the bowel has sufficient fluids and fiber to perform its function.

 

Let me know if you have other questions.


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Kathrynne Holden, MS

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#3 ljf

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Posted 14 December 2013 - 03:21 PM

Thanks for the reply. I do have another question.

Is it true that I shoud look for only insoluable fiber because soluable 

will slow the intestine down? 



#4 Kathrynne Holden, MS

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Posted 16 December 2013 - 07:05 PM

It is true that soluble fiber tends to stay in the stomach longer. However, nearly all foods contain more insoluble fiber than soluble. Examples:

 

 

Food                                Soluble fiber (grams)            Insoluble fiber (grams)

Apple, 1 medium                     1                                             4

Pear, 1 medium                       2                                             4

 

Beans, 1/2 cup cooked:

Black beans                            2                                           5.5

Lentils                                     1                                             8

Northern beans                       5                                           5.5

 

Vegetables, 1/2 cup cooked:

Brussels sprouts                      3                                           4.5

Carrots                                    1                                            2.5

 

Grains, 1/2 cup cooked:

Oatmeal                                   1                                            2

Pearl barley                              2                                           5

Brown rice                               .5                                           4

 

 

So, in general, the insoluble fiber will usually more than balance the soluble fiber, as long as you're eating whole foods.

 

If you have other questions, don't hesitate to ask -- I will clarify whenever possible.


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#5 deborah

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Posted 21 December 2013 - 07:52 AM

Hope you are having an enjoyable holiday!!  

 

I have two (what to me are) big problems.  It is my understanding from what I have read on these posts that because I am not regular that the sinemet (I take 6 tabs of 25/100 a day- every 3 hours 6:00 am - 9:00 pm) sits in my intestines unabsorbed and lies there so that when my next dose hits the intestines it therefore cause a build up of levadopa in my body.  This could raise the possibility of dyskinesia. And what really scared me, thus leading to this post, is that this week  I started what I would call more like flapping on my lower PD left side which caused the top part of me to sway from one side to another.  It was much different than the usual tremoring and has happened twice this past week. 

 

I was diagnosed with PD in 2010 but I have suffered with constipation for years now and didn't realize how important being regular is in relation to absorption of my Levadopa until I started reading the posts on this site.  In 1998 I joined a 12 step recovery program for compulsive over-eaters and started to eat very healthy which eliminated sugar, wheat and flour and limited oil intake to 4 Tbl a day.  I eat 3 fruits a day at least 3 cups of veggies a day (that include raw Kale and broccoli) and drink 6-8 glasses of water, and 2 servings of 1/2 c cooked Quiona or steel cut oats or raw flax seed or brown rice a day.  I can still go 3-4 days without movement and this has been going on since 1998.  I have been checked out by gastro doctor and get my colonoscopys on the regular basis and nothing has been found.  Before being diagnosed in 2010 the constipation and bloating really scared me and I went from driving my gasto dr. crazy trying to find out the reason to driving my gyno dr crazy (because of the bloating and cramping) thinking then that it must be that and then when my tremor started I was diagnosed with PD and I had the reason why.  All through all these years and to this day suffer from embarrassing uncontrollable gas.  I have since 1998 taken 4-8 stool softeners a day and this past fall decided that my fat intake is too low so I added from 1 to 2 tbls a day of flax seed oil and stopped with the stool softeners.  But I can still go for 3 days without a hint.  Always hard round ovals and I do not seem to be able to make my muscles work.  When I get really scared because of non-movement I drink a 1/2 bottle of magnesium citrate and that helps me have movement as described in the last sentence - it is never ever soft or loose.  I started reading NPF discussions and saw that they recommended Miralax at suggested dose 2x a day so I just bought a bottle and took my first dose last night.     

 

My other problem is food/meds.  I am 64 and last year had to start commuting to NYC because the firm I work for consolidated with the NYC branch and for insurance reasons I had to go with them.  My commute has gone from 15 min. to sometimes 1.5 hours each way.  So I have to take two meds at home, two on the train and 2 at work.  I am one of the  "lowly ones" and therefore I sit at my computer all day with too much work, not enough time in the day and stressed.  I forget to take my meds all of the time and don't realize until the Off symptoms start.  I also have a hard time following the 1 hour before/2 hour after regime.  So, except for the morning, I oftentimes take my meds along with food.  My phone alarm is set for taking meds but when the alarm sounds, I turn off the alarm because I am either on the office phone or one of my bosses is standing at my desk giving me orders. I then either forget to take my meds or can't remember if I did or did not.  I also suffer attention problems (self diagnosed) and from memory problems so I can go to reach for a pill, something pops into my head to do, turn to do that task and swear up and down that I have taken a pill and it is still there.  But if I don't lay out my meds I am sunk as to whether I have taken a pill or not.  That is another problem that has popped up lately is ability to focus - I have lately been having tremendous urges to jump from one task to another because I lose focus.  What ever pops up in front of me pulls me and I cannot focus.  I also can no longer spell - go figure - my spelling used to be great.  I think cognitive problems are from the 2 mg. Nupro patch I started taking almost a year ago.  

 

Sorry, for being so descriptive.  Oh, and wanted to add that I take lots of vitamins plus some joint stuff and MSM..  I was diagnosed years ago with osteoporosis in one hip and because of eating all of my veggies only have to take one Caltrate tab a day at night along with a D3 and the dr. had me on a schedule of one year on and one year off of my osteo meds.   

 

Also want to add that I always participated in exercise (some kind of group) and walking since 1998.  Since my trek to the City started the only exercise I get is walking the 68 steps out of the subway in the morning and walking between the subway to the train 2 times a day.  My building is right above the subway so no walking there.  My life has become commute, work, sleep.  I know I can press myself to do more.  But I don't want to - I've had enough.

 

Would appreciate any suggestions you might have on any of my above life story.  Thanks soooo much!



#6 Kathrynne Holden, MS

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Posted 21 December 2013 - 06:44 PM

You’ve done an excellent job of describing and outlining your concerns, and that helps a great deal. Constant hard stools, despite stool softeners and adequate water and a diet rich in high-fiber foods is very often due to slowed movement of the large intestine. The Miralax may very well help, as it is designed for constipation due to slowed intestinal movement, and it sounds as though that is the case for you.

You might also consider use of probiotics – yogurt or kefir (if milk protein is a concern with regard to levodopa, you can obtain water kefir, or make it with coconut milk) can help greatly to keep the colon healthy and balanced, and regulate bowel movements.

However, let me also ask whether your gastroenterologist has ruled out small intestinal bowel overgrowth (SIBO). Your bloating, cramping, gas, and constipation could be signs of SIBO, a condition in which dangerous bacteria are able to grow in the small intestine. A healthy intestine does not contain unfriendly bacteria, because its normal movement prevents bacteria from attaching to the walls of the intestine. Of concern, a study found that SIBO was far more common among subjects with PD than control subjects. This may be because PD can affect the autonomic nervous system, which guides movement of the gastrointestinal tract.

SIBO causes a condition called “malabsorption syndrome (MAS)". The attached bacteria compete with the human host for nutrients. The bacteria may inflame and damage the walls of the small intestine, so that nutrients cannot cross the walls and enter the bloodstream. They also produce gas and abdominal distention. The damage may cause carbohydrate and protein malabsorption as well as malabsorption of vitamin B12 and fat-soluble vitamins A, D, and E. Common signs of SIBO include constipation, bloating, cramping, and flatulence.

Your doctor can test for SIBO using a test called the “hydrogen breath test.” If SIBO has not been ruled out, I would definitely ask that this be done.    Print out the following and take it to your doctor:

Mov Disord. 2011 Apr;26(5):889-92. doi: 10.1002/mds.23566. Epub 2011 Feb 1.

Prevalence of small intestinal bacterial overgrowth in Parkinson's disease.

Gabrielli M, Bonazzi P, Scarpellini E, Bendia E, Lauritano EC, Fasano A, Ceravolo MG, Capecci M, Rita Bentivoglio A, Provinciali L, Tonali PA, Gasbarrini A.

Internal Medicine Department, Catholic University of Sacred Heart, Rome, Italy.
mauriziogabrielli@gmail.com.

BACKGROUND: Parkinson's disease (PD) is associated with gastrointestinal motility abnormalities that could favor the occurrence of small intestinal bacterial
overgrowth. The aim of the study was to assess the prevalence of small intestinal
bacterial overgrowth in PD patients.
METHODS: Consecutive PD patients were enrolled. The controls were subjects without PD. All patients and controls underwent the glucose breath test to assess small intestinal bacterial overgrowth.
RESULTS: Forty-eight PD patients and 36 controls were enrolled. The prevalence of small intestinal bacterial overgrowth was significantly higher in PD patients than in controls (54.17% vs 8.33%; P < .0001; OR, 2.24; 95% CI, 3.50-48.24). Multivariate analysis showed Hoehn and Yahr stage (OR, 3.07; 95% CI, 1.14-8.27) and Unified PD Rating score (OR, 1.12; 95% CI, 1.02-1.23) were significantly associated with small intestinal bacterial overgrowth in PD patients.
CONCLUSIONS: Small intestinal bacterial overgrowth is highly prevalent in PD. Gastrointestinal motility abnormalities might explain this association.
PMID: 21520278  [PubMed - in process]


                
With regard to your second problem, I can certainly see and sympathize with your concerns. Three hours of commuting time daily, by itself, would make it very difficult to time meals and medications, as well as get regular exercise. The constant interruptions at work are an additional distraction. I cannot change these factors, but I will comment as able:

- There are pill timers that both contain the day’s supply of pills and have an alarm that goes off when the pill is due. You probably have a water bottle at your desk and with you on the commuter train; place the pill timer next to this. When the alarm goes off, your water will be handy so that you can take the pill on time.

- You must discuss your situation with your boss; let him/her know that timing of your meds is vital in order for you to do your work. So if he/she is talking to you when your timer alarm goes off, you will need time to stop and take the pill. If the alarm goes off while you’re on the phone, then when the call is over, you’ll be able to check your pill timer container and tell whether or not you took the pill.

I hope this is useful, but if not, write back and let me know; I will help as much as I can. Also, if you are taking any other meds besides Sinemet and Neupro, that would be helpful.


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Kathrynne Holden, MS

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#7 deborah

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Posted 23 December 2013 - 01:07 PM

Thank you for your fast response!!!!   I will print this out and show it to my gastro Dr. and see if that is what is wrong with me.  As soon as I am off the puter I am going to go to my health food store to find out about the Kefir.  I have read up now and am very interested in this.  I always have one cup of yogurt a day and one cup of milk so I will replace the milk with the Kefir.  I



#8 Kathrynne Holden, MS

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Posted 23 December 2013 - 06:51 PM

Deborah, I very much hope your doctor will be able to explore further into the cause of your constipation. PD causes many, many unusual GI problems, due to its effect on peristalsis. Slowed peristalsis can affect the esophagus (swallowing problems), the stomach (gastroparesis), the small intestine (SIBO), and the colon (constipation); yet doctors are not always aware of this. This is why I post journal references to print out and show the doctor.

 

Regarding the milk/yogurt, some people are acutely sensitive to milk proteins, so much so that some find their levodopa does not kick in for hours, or even until the next day. Probably this is because milk is particularly rich in the aminos that compete with levodopa for absorption in the small intestine. If you think this might be the case, I recommend you choose water kefir or one made with coconut milk, and eliminate all milk products for a month or two. Note whether there is any difference in levodopa uptake, "on time," or PD symptoms. If there is no difference, then milk protein is probably not an issue for you. But if you find improvement in any of these factors, then you might be among those sensitive to milk protein. It's worth a trial.

 

Please write back and let us know how you are doing.


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#9 Island Woman

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Posted 23 December 2013 - 08:26 PM

Hi Kathrynne, since August on the advice of my dr. I've gone gluten free and have seen major bowel correction. I've found it very easy to adjust to since major grocery products are now addressing gluten free. Intestional gas and blotting have disappeared. Just a suggestion that has worked for me.

Patricia

#10 Kathrynne Holden, MS

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Posted 25 December 2013 - 09:17 AM

Patricia, thank you, that's an excellent suggestion, and a good reminder to ask one's physician about the possibility of gluten intolerance, celiac disease, and wheat allergies. Thankfully, as you mention, there are an abundance of both products and recipes available today that make gluten avoidance much easier than it used to be.


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#11 deborah

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Posted 01 January 2014 - 04:36 PM

Deborah, I very much hope your doctor will be able to explore further into the cause of your constipation. PD causes many, many unusual GI problems, due to its effect on peristalsis. Slowed peristalsis can affect the esophagus (swallowing problems), the stomach (gastroparesis), the small intestine (SIBO), and the colon (constipation); yet doctors are not always aware of this. This is why I post journal references to print out and show the doctor.

 

Regarding the milk/yogurt, some people are acutely sensitive to milk proteins, so much so that some find their levodopa does not kick in for hours, or even until the next day. Probably this is because milk is particularly rich in the aminos that compete with levodopa for absorption in the small intestine. If you think this might be the case, I recommend you choose water kefir or one made with coconut milk, and eliminate all milk products for a month or two. Note whether there is any difference in levodopa uptake, "on time," or PD symptoms. If there is no difference, then milk protein is probably not an issue for you. But if you find improvement in any of these factors, then you might be among those sensitive to milk protein. It's worth a trial.

 

Please write back and let us know how you are doing.

Hi Kathrynne,  

 

Happy New Year to you and all!  I ran out and got the Kefir Grade A Plain Low Fat Pasteurized Cultured Milk with 10 live & Active Cultures, Lactose Free, Probiotics, Gluten Free.  Every morning I drink 1/2 cup Kefir and 1/2 cup of milk.  This is going to make you laugh but it is true - my whole life re my digestion problem has changed for the first time since 1998!!!!  I hope you can tell me how this happened but for the first time I have results right away with soft stools that are not oval balls.  I don't know why this has made such a difference and now I do not have to exert loads of energy for this to come about.  Matter of fact today I decided to cut it to 3/4 skim milk and 1/4 Kefir because it is a little too soft.  I am very pleased with the results.  I stopped taking the Miralax 2 days after starting the Kefir.  I still do the flax seed oil - one T. a day and either every morning or every other day I have been eating 1/4 c of ground flax seed.  Since I have the PD I guess I should try to find the water kefir.  My Health Food Store only carries what I am using.  I read up on Kefir and I think that my Osteo dr. will love that I drink this because of the calcium.  If the Kefir solves my problem so well what does this mean?  Do you think I still need to get checked out at the drs?  Does the water Kefir have lots of calcium as well?  Of course, I don't want to get my hopes up, but time will tell.  Just a note in re to the Wheat, gluten, flour problem.  From 1998 until 2011,  I ate no refined sugar, wheat or flour in any type or form.  In 2011, I broke my abstinence in OA and only rarely will ingest the wheat and flour.  

 

I just wanted to let you know that I have solved another problem that was bothering me with a simple solution.  People have kept telling me to use a weekly pill container and my response was that it is not going to help because I take so many pills in one day.  Well I take 7 pd pills a day and there are 7 little boxes so I tried that.  I still mess up my meds because of turning off my alarm and moving on to something else but at least I know which ones I have forgotten to take and I am no longer taking double.  The pill box helps me a lot to remember.  I am so happy that I followed these simple suggestions instead of blowing them off as silly and unimportant!!!

 

My last problem is that I have to take my meds every 3 hours and of course the suggestion is 1 hour before I eat or 2 hours after I eat.  Now that is hard when I take pills every 3 hours.  It is all well and good when I stay on schedule which is 

 

6:00 am - 

  • 1 - sinemet (I take generic)
  • 2 mg Nuepro patch

7:00 am

Breakfast 

  • One a day vitamin
  • 1 tab 500 mg pure MSM
  • 1 tab of Osteobiflex
  • 1 tab L-Tyrosine
  • 1 or 2 Tbls. Flax seed oil

9:00 am - 1 sinemet

12:00 pm - 1 sinemet

12:30-1:00 - Lunch

3:00 - 1 sinemet

6:00 - 1 sinemet

7:00 

Dinner

  • 1 - tab Azilect
  • 1 tab pure MSM
  • 1 tab osteobiflex
  • 1 tab  2,000 iu D3
  • 1 tab 600 Caltrate with D
  • 1 tab 1000 mcg B12

9:00 - 1 sinemet

 

Just to explain why I take all of that (I swear I am only a mild hypochondriac):  I was diagnosed through blood work with low D3 and B12 a couple of years ago so the dr. has me on those to maintain. I take the MSM and OsteoBiflex for self diagnosed arthritis in my knees.  When I don't take them I have terrible pain in both knees when going down stairs.  I cut back to once a day in the summer time because the pain starts/stops with the cold weather.  I take the L-tyrosine 500 mg because I read about it somewhere.  And, of course, the D, Caltrate and 1 a day is from my Osteoprosis dr.  I usually take Vit C 2x a day but have stopped now because I am going to take part in a trial  in NYC that is testing the supplement NAC and they asked me to stop taking that for the trial that I will start in January.  

 

I eat 4 oz of protein (consisting of any of these: egg, meat, poultry, beans, dairy) 3 times a day + the 3/4 c skim milk and 1/4 Kefir.  

Sometimes I am taking my sinemet right along with my food on off-schedule days.  Although I can't tell the difference with or without food I feel maybe I wouldn't have to take so much sinemet if I could cut out some of the protein. I also eat 6 cups various vegs a day and 3 fruits plus 1 cup grain spread over the 3 meals.  I know that protein is in everything we eat.  

 

 Is all of the protein the same in terms of brain blocking?  Is any protein better than others that I would be able to focus on.  What do you think about all of this?  

 

I can't begin to tell you what a difference your prior suggestion has made in my life and I thank you so much!!!!!  This is a wonderful place to come.  I didn't even have any idea why it was important that I not be constipated like I was until the Pharmacist on this NPF site told me that it was!!!!  Thank you for any help you can give me/us with PD on this subject.  Please don't forget to tell me why you think the kefir works so well for me!!!  Thank you and the best to you!!!!



#12 Kathrynne Holden, MS

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Posted 03 January 2014 - 06:44 PM

Deborah, I’m delighted that the kefir is helping you. The reason why kefir (and other fermented foods) is helping you is because it restores the balance of “friendly” microorganisms that are supposed to inhabit the colon. The colon is normally home to billions of important probiotic bacteria which help to produce soft, formed stools. There are many possible ways to reduce these friendly bacteria – antibiotics, insufficient prebiotic foods (foods that the probiotic bacteria feed on), poor diet, etc. Kefir helps to rebuild the balance. Yogurt is good; however, kefir has a much greater variety of the useful bacteria, plus various yeasts that work in conjunction with them.

If you no longer experience the bloating, cramping, gas and constipation; and if the constipation is no longer causing dyskinesia, then I would put off consulting your doctor for the time being. If the kefir continues to keep you regular and feeling good, then it may well be that your problem is solved.

Regarding water kefir, it will not have the calcium you need, unfortunately. I recommend it for those whose protein sensitivity is such that milk protein severely limits their levodopa uptake. That may not be an issue for you. If in future you find that you are experiencing more “off time” or the levodopa doesn’t seem to kick in as it used to, then I would omit milk and dairy products for several weeks, and keep a journal regarding the results. If you then find that the levodopa kicks in sooner, lasts longer, and your PD symptoms are better controlled, then it’s likely that the milk protein has become problematic, and it would be better to choose water kefir. You would probably need to increase your calcium supplement to make up the difference.

It’s very good to hear that the pill box is helping somewhat. It’s only human to forget pills sometimes but as you say, you can now tell whether you took the pill or not, so that you’re not accidentally taking double the amount.

Regarding timing of Sinemet and meals, if you sometimes take Sinemet with your meal, and can’t tell any difference in levodopa uptake, then you are most likely not among the protein-sensitive. Also, most people don’t need to take Sinemet an hour before meals; usually 30 minutes is enough time for the Sinemet to enter the small intestine for absorption.

Your eating plan sounds excellent to me – plenty of vegetables and fruits, whole grains, and sufficient protein to meet your needs. Many folks want to cut out protein, but this is very dangerous – you require about ½ gram protein per pound of body weight per day, to restore and repair cells, hair, skin and nails, and muscles (including the heart). You’re dividing this amount about equally among morning, midday, and evening meals, I could not possibly improve on your regimen.

It’s true that not all protein is quite the same – animal proteins have no fiber, and often block levodopa much more so than plant proteins such as legumes. But animal proteins provide iron and zinc in much more available forms than plant proteins; and plant foods have no B12. You might vary these proteins – plant proteins for breakfast and midday meals, and animal protein in the evening meal, and note whether that makes a difference.

Your list of supplements seems very reasonable to me; you are clearly very well educated with regard to nutrient needs and need for supplements to combat osteoporosis and arthritis. I congratulate you on your foresight and diligence, and on seeking information to help fight PD, this is 90% of the battle. If you have other questions, or if I didn’t explain a point sufficiently, don’t hesitate to let me know, I will help as much as I can.


Best regards,

Kathrynne Holden, MS

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#13 deborah

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Posted 09 February 2014 - 06:43 AM

Hi Kathrynne, 

 

Happy New Year!  Just wanted to update you that I'm still drinking the Kefir and it is still working.  I was buying it from my health food store but he stopped selling it because it had a short shelf life and I tried it at another store but I don't think it had enough cultures in it and I tried a different brand at another store and it is much better.  Of course when I was going through this period I had to start taking Miralax again and it helped but once I found the brand I stopped taking the Miralax and the kefir is working on its own again!!! For the first time in 15 years I am back to it being normal looking and everything.  Yeah!!  I do have to see my gastro dr. in June for a 5 year test and will take him the information on SIBO you posted above.  You don't know how much I appreciate your help and guidance and the big difference it has made in my life!!!  I also enjoy reading all your posts on the newest happenings in PD research, etc.  Thank you so mucy!!!



#14 Kathrynne Holden, MS

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Posted 10 February 2014 - 06:20 PM

Deborah, I'm so happy to know that you've experienced benefits from kefir -- that makes my day. Heck, it makes my whole year! :)

 

You likely don't have the time, but if you do, you can make your own kefir, and it's a lot less expensive. If so, here is an email forum for making different kinds of kefir:   https://groups.yahoo...fir_making/info

 

Hope you'll let us know how your visit with your gastroenterologist goes!


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