Hi Friends,
I started taking ketotefen Monday evening. My pharmacist said to begin taking it in the evening the first couple of weeks until I am used to it (it causes drowsiness) and then begin to take it with meals. I've experienced no drowsiness at all and no side effects at all which is surprising as benedryl always made me feel out of bodyish. I know it is way too soon to tell but I have had a better than usual 5 days. I found this study that was really interesting. It speaks to MC, parasites and IBS.
http://www.pubmedcentral.nih.gov/articl ... id=1856149
My stool test came back negative for parasites and yeast so I am very happy. They only found DNA fragments of the parasites but no complete DNA. So, I still must be shedding the residual pieces.
I also did a serum allergy test and it came back that I was allergic to 33 foods. I am not sure of the accuracy of these tests but I do know that I did this for my dog and eliminated the allergic foods and he has improved. That said, the reactions are rated from 1 to 4 and all mine were 1 and 2. I am thinking most of these are due to my small intestine not being protected and will diminish as I heal.
I will keep you posted on how I do with the ketotifen.
Love,
Cristi
Ketotifen
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Cristi,
That sounds very interesting, and I'm looking forward to your followups on this topic. I hope it works as well as you are hoping.
That's a very, very interesting reference, also - thanks for posting that.
It's good to see that the stool test results were negative, also.
Thanks for the update.
Love,
Tex
That sounds very interesting, and I'm looking forward to your followups on this topic. I hope it works as well as you are hoping.
That's a very, very interesting reference, also - thanks for posting that.
It's good to see that the stool test results were negative, also.
Thanks for the update.
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Hi Pat,
I've been on two (1mg) capsules of ketotifen per day for around 6 weeks. I get too sleepy if I try to take the 3/day. That's the only side effect I have had with this medication. After about 3 weeks I noticed a tiny bit of improvement but nothing substantial, but I never had any markers for increased mast cells...just tried it because there is literature that suggests that they are involved in IBS. However I started some other meds that seem to be helping more, or the combination is helping more. These last three weeks I've been taking gastro-UCL from Apex Energetics (very soothing to my stomach and small intestine) and 1mg. naltrexone. I decided to take the naltrexone because I have a strong family history of auto-immune diseases...lupus,myasemia gravis, RA. Also, for the last 5 years I have never caught a cold or the flu despite the fact that my husband and son each get two or three colds a year and the flu once a year. I take care of them but never catch it. My naturopath thinks that this indicates an altered immune system. Also, I have been growing broccoli sprouts (very proud of this) and consuming a cup a day since it supposed to decrease inflammation. I also switched probiotics from pharmax to VSL#3.
I seem to be to be improving. Remember that I don't have D.. just IBS, cramping and motility problems. Eliminating fruits and FODMAPS helped but I still had problems. But these past three weeks my symptoms are less severe and if I do get cramps they seem to pass sooner than before. I still haven't tried fruit...don't plan to in the near future, but I am eating more raw food...spinach, sprouts,carrots jicama. I find I can eat rhubarb with no problems at all....it's a vegetable I think....but I can fool myself into thinking that I am eating fruit. I also have no problems with nuts and seeds.
My other breakthrough was my serum allergy food test. I was reacting to 33 foods. The one that was fooling me for a long time was vanilla. I never could figure out why I reacted to hemp sometimes and not others cause sometimes I would get vanilla flavored and sometimes not. I would think I was reacting to a flour in baking mixes when it was the vanilla. In hind sight it seems so obvious...but when 33 other foods besides gluten, dairy, soy, eggs and yeast are involved it gets confusing. I had hopes of eventually getting to eat out sometimes but I don't think that is ever going to be in the cards for me.
I think that the naltrexone is the reason besides the diet that is helping me most. I did have some problems with sleep the first week but am sleeping better now and feeling more well rested in the morning. I am also feeling less anxious. It feels strange to be taking medication without having a diagnosis. I am feeling better without knowing exactly what is going on. As you know I get nervous even taking vitamins, so this is strange for me.
It sounds like you have found a good allergist, Pat. When you've been on as long a road as we've been on, it's such a blessing to find a caring person who is willing to think outside of the box. Good luck.
Love,
Cristi
I've been on two (1mg) capsules of ketotifen per day for around 6 weeks. I get too sleepy if I try to take the 3/day. That's the only side effect I have had with this medication. After about 3 weeks I noticed a tiny bit of improvement but nothing substantial, but I never had any markers for increased mast cells...just tried it because there is literature that suggests that they are involved in IBS. However I started some other meds that seem to be helping more, or the combination is helping more. These last three weeks I've been taking gastro-UCL from Apex Energetics (very soothing to my stomach and small intestine) and 1mg. naltrexone. I decided to take the naltrexone because I have a strong family history of auto-immune diseases...lupus,myasemia gravis, RA. Also, for the last 5 years I have never caught a cold or the flu despite the fact that my husband and son each get two or three colds a year and the flu once a year. I take care of them but never catch it. My naturopath thinks that this indicates an altered immune system. Also, I have been growing broccoli sprouts (very proud of this) and consuming a cup a day since it supposed to decrease inflammation. I also switched probiotics from pharmax to VSL#3.
I seem to be to be improving. Remember that I don't have D.. just IBS, cramping and motility problems. Eliminating fruits and FODMAPS helped but I still had problems. But these past three weeks my symptoms are less severe and if I do get cramps they seem to pass sooner than before. I still haven't tried fruit...don't plan to in the near future, but I am eating more raw food...spinach, sprouts,carrots jicama. I find I can eat rhubarb with no problems at all....it's a vegetable I think....but I can fool myself into thinking that I am eating fruit. I also have no problems with nuts and seeds.
My other breakthrough was my serum allergy food test. I was reacting to 33 foods. The one that was fooling me for a long time was vanilla. I never could figure out why I reacted to hemp sometimes and not others cause sometimes I would get vanilla flavored and sometimes not. I would think I was reacting to a flour in baking mixes when it was the vanilla. In hind sight it seems so obvious...but when 33 other foods besides gluten, dairy, soy, eggs and yeast are involved it gets confusing. I had hopes of eventually getting to eat out sometimes but I don't think that is ever going to be in the cards for me.
I think that the naltrexone is the reason besides the diet that is helping me most. I did have some problems with sleep the first week but am sleeping better now and feeling more well rested in the morning. I am also feeling less anxious. It feels strange to be taking medication without having a diagnosis. I am feeling better without knowing exactly what is going on. As you know I get nervous even taking vitamins, so this is strange for me.
It sounds like you have found a good allergist, Pat. When you've been on as long a road as we've been on, it's such a blessing to find a caring person who is willing to think outside of the box. Good luck.
Love,
Cristi
Cristi,
Everything you mentioned is interesting, but I'm especially interested in a couple of the things you discussed. How did you determine your dose of naltrexone? I note that some sources say that low dose naltrexone should be at the rate of 10 % of a "normal" dose, while others suggest 3 mg per day for MS, for example. Did you determine your ultra-low dose by someone's recommendation, flip a coin, or was that your doctor's recommendation?
I assume that the "hemp" you are referring to is hempmilk. I've only used the vanilla version, but it causes bloating every time, for me. Other than a mild headache, or sort of a general "cruddy" feeling, I have no other symptoms, (no D, or body aches, for example). Were your symptoms more severe than that? IOW, do you think there would be any point in me trying the "regular" flavor? It's not available locally, so I have to order it, which makes it a little expensive, unless I order a case at a time. Otherwise I would just pick up a quart, and try it.
Thanks for all the valuable insight - it's good to see that you're having good results.
Love,
Tex
Everything you mentioned is interesting, but I'm especially interested in a couple of the things you discussed. How did you determine your dose of naltrexone? I note that some sources say that low dose naltrexone should be at the rate of 10 % of a "normal" dose, while others suggest 3 mg per day for MS, for example. Did you determine your ultra-low dose by someone's recommendation, flip a coin, or was that your doctor's recommendation?
I assume that the "hemp" you are referring to is hempmilk. I've only used the vanilla version, but it causes bloating every time, for me. Other than a mild headache, or sort of a general "cruddy" feeling, I have no other symptoms, (no D, or body aches, for example). Were your symptoms more severe than that? IOW, do you think there would be any point in me trying the "regular" flavor? It's not available locally, so I have to order it, which makes it a little expensive, unless I order a case at a time. Otherwise I would just pick up a quart, and try it.
Thanks for all the valuable insight - it's good to see that you're having good results.
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi Tex,
The reaction I got from the vanilla and the chocolate flavor hempseed milk was just a sicky feeling primarily in my lower gut. It was not the same as gluten or soy which is D. Dairy makes my hands tender....I can tell when I get a little in my medication. The reaction I got from the vanilla hempmilk was similar to other things I learned I was reacting to thru the blood test like pumpkin and yellow squash. I don't have any reaction to the original flavor except "yum" :)
My naturopath and I decided on the dosage for the naltrexone. The usual is 3 to 4.5mg. I am usually very reactive to medications and also have problems sleeping so we decided to start smaller for the first month. My symptoms have not completely disappeared but are noticeably better so I expect we will increase the dose next month.
The surprising effect for me was the decrease in anxiety as I was so used to it I wasn't even aware of it until I was feeling better. This may be because of it's effect on the thyroid. If you remember at the beginning of me getting sick I had taken a thyroid test ....an iodine uptake test I think...where I showed early or borderline Graves disease. I took a tiny dose for it but my thyroid then went way too far in the other direction...so I ended up stopping that medication. Anyway, when taking naltrexone when your thyroid is off they suggest starting out with a smaller dose as you may have to adjust your thyroid meds or completely eliminate them. It was kind of the same feeling as when I took thyroid meds for hyperthyoidism.....which slowed things down for me including feeling less anxious. Don't know if that is what is happening now or not, but it has a similar feel.
They have been conducting a study in Canada for the last 3 years using LDN to treat IBS patients. I don't know when they will publish the results.
Have a good day, Tex.
Love, Cristi
P.S. Why do I always have a quick edit at the end of my posts?
The reaction I got from the vanilla and the chocolate flavor hempseed milk was just a sicky feeling primarily in my lower gut. It was not the same as gluten or soy which is D. Dairy makes my hands tender....I can tell when I get a little in my medication. The reaction I got from the vanilla hempmilk was similar to other things I learned I was reacting to thru the blood test like pumpkin and yellow squash. I don't have any reaction to the original flavor except "yum" :)
My naturopath and I decided on the dosage for the naltrexone. The usual is 3 to 4.5mg. I am usually very reactive to medications and also have problems sleeping so we decided to start smaller for the first month. My symptoms have not completely disappeared but are noticeably better so I expect we will increase the dose next month.
The surprising effect for me was the decrease in anxiety as I was so used to it I wasn't even aware of it until I was feeling better. This may be because of it's effect on the thyroid. If you remember at the beginning of me getting sick I had taken a thyroid test ....an iodine uptake test I think...where I showed early or borderline Graves disease. I took a tiny dose for it but my thyroid then went way too far in the other direction...so I ended up stopping that medication. Anyway, when taking naltrexone when your thyroid is off they suggest starting out with a smaller dose as you may have to adjust your thyroid meds or completely eliminate them. It was kind of the same feeling as when I took thyroid meds for hyperthyoidism.....which slowed things down for me including feeling less anxious. Don't know if that is what is happening now or not, but it has a similar feel.
They have been conducting a study in Canada for the last 3 years using LDN to treat IBS patients. I don't know when they will publish the results.
Have a good day, Tex.
Love, Cristi
P.S. Why do I always have a quick edit at the end of my posts?
Thanks for the information - all of that certainly makes sense.
Regarding the "Quick Edit" feature: if you click inside that little circle, the system will open a small window, over your post, where you can edit the text of your post, without all of the "bells and whistles" that are available for the regular "Edit" window. When you finish, you click on the little "Edit Post" box, just below the window, to submit your changes. It used to be faster than using the regular edit option. Unfortunately, due to a security upgrade that was made after that "Quick Edit" feature was added to the board, the system now requires that we resubmit it, one more time, before it will actually be entered, so there is no longer any advantage in using it. I suppose I should take the time, one of these days, to track down that code, and remove it, since it's no longer useful.
I hope you're having a good day, too.
Love,
Tex
Regarding the "Quick Edit" feature: if you click inside that little circle, the system will open a small window, over your post, where you can edit the text of your post, without all of the "bells and whistles" that are available for the regular "Edit" window. When you finish, you click on the little "Edit Post" box, just below the window, to submit your changes. It used to be faster than using the regular edit option. Unfortunately, due to a security upgrade that was made after that "Quick Edit" feature was added to the board, the system now requires that we resubmit it, one more time, before it will actually be entered, so there is no longer any advantage in using it. I suppose I should take the time, one of these days, to track down that code, and remove it, since it's no longer useful.
I hope you're having a good day, too.
Love,
Tex
Hi Christi,
I am so glad you are finding things to help you. Is Naltrexone over the counter? Are you receiving allergy shots for the 33 things you are allergic to? or just avoiding them.
I do better if I completely avoid sugar of any kind. No Normans yet.
My sinuses are better with the Singulair. Just waiting for July 8. Allergist doesn't want me to change anything else in the mean time.
I tried plain hemp milk and I ended up pouring it down the drain. I'm sorry but that was yucky!
How do you grow broccoli sprouts - kinda like alfalfa sprouts? I've grown them before. Where do you get the seeds?
Pat
I am so glad you are finding things to help you. Is Naltrexone over the counter? Are you receiving allergy shots for the 33 things you are allergic to? or just avoiding them.
I do better if I completely avoid sugar of any kind. No Normans yet.
My sinuses are better with the Singulair. Just waiting for July 8. Allergist doesn't want me to change anything else in the mean time. I tried plain hemp milk and I ended up pouring it down the drain. I'm sorry but that was yucky!
How do you grow broccoli sprouts - kinda like alfalfa sprouts? I've grown them before. Where do you get the seeds?
Pat
Hi Pat,
Thanks. I am doing better, but I don't want to overstate it...I still have room for lots of improvement. Low dose naltrexone was prescribed by my naturopath and was filled by a compounding pharmacist. I know it's way more complicated than this, but what my naturopath said was that there are two sides to the immune system (Th1 and Th2) and for some people they are not balanced and one becomes dominate or overactive. LDN is supposed balance the immune system.
The broccoli sprouts look like alfalfa but smell strongly of broccoli and have a stronger flavor than alfalfa. It took me a few times eating them before I developed a taste for them...but now I really enjoy them. I got my seeds and a plastic growing container at www. spoutamo.com
Sorry you don't like the hempmilk. I don't drink it straight...I pour it over buckwheat cereal......use it in my muffin recipe and have made wonderful ice cream.
I haven't thought about seeing an allergist to take shots for the allergies. The reaction to the foods were all 1and 2's out of a possible level 4 reaction. I guess I will continue to eliminate everything until hopefully I heal and have no symptoms. I haven't developed a plan for after that. I have read about a food allergy treatment called naet I think. I don't remember what it stands for but it involved putting drops of the offending food under your tongue in increasing amounts. A friend of mine did this with her son and it was successful.
I'll keep my fingers crossed for you July 8th.
Love,
Cristi
Thanks. I am doing better, but I don't want to overstate it...I still have room for lots of improvement. Low dose naltrexone was prescribed by my naturopath and was filled by a compounding pharmacist. I know it's way more complicated than this, but what my naturopath said was that there are two sides to the immune system (Th1 and Th2) and for some people they are not balanced and one becomes dominate or overactive. LDN is supposed balance the immune system.
The broccoli sprouts look like alfalfa but smell strongly of broccoli and have a stronger flavor than alfalfa. It took me a few times eating them before I developed a taste for them...but now I really enjoy them. I got my seeds and a plastic growing container at www. spoutamo.com
Sorry you don't like the hempmilk. I don't drink it straight...I pour it over buckwheat cereal......use it in my muffin recipe and have made wonderful ice cream.
I haven't thought about seeing an allergist to take shots for the allergies. The reaction to the foods were all 1and 2's out of a possible level 4 reaction. I guess I will continue to eliminate everything until hopefully I heal and have no symptoms. I haven't developed a plan for after that. I have read about a food allergy treatment called naet I think. I don't remember what it stands for but it involved putting drops of the offending food under your tongue in increasing amounts. A friend of mine did this with her son and it was successful.
I'll keep my fingers crossed for you July 8th.
Love,
Cristi