It will be hard for me to ask everything that is going through my mind, keep it short, and yet make sense.
In 2009 I had a few periods of loose stools but was not too concerned with it. I thought I just was eating too much fresh fruit from our fruit trees.
On Sept 15, 2009 I saw my Endocrinologist because I am taking Levothyroxine for hypothyroid and I thought my medication needed to be adjusted. After my TSH & T4 came back normal I asked, "If my tests are normal, why am I so hot, have lost 10 lbs, have diarrhea, and can't sleep". These are all signs of hyperthyroid not hypothyroid. She then ordered a 5-HIAA test along with other tests. The 5-HIAA I read on the internet was used to rule out the presence of carcinoid tumors in the intestines. After 4 weeks of waiting I was so relieved when all the tests came back negative or normal. I continued to have a little D on and off but still was not concerned.
On Jan 6, 2010 I had a tooth abscess and was treated with penicillin and the D became explosive. PCP referred me to GI for Sigmoid and Colonoscopy and was diagnosed with CC on Feb 12. I started Rx that evening. The first two weeks I was taking 6 Balsalazide 750MG capsules a day and then 9 a day after that. I have enough I believe to last through March 19. At that time I will have been on it a total of 5 weeks. I can have 11 refills of this RX. ( I hope to have the results of my tests from EnteroLab back by then). The RX container says “do not discontinue unless directed by your physician”. Why is this? Is this a medication that you have to wean yourself off from or can I just stop taking it?
I also have a month supply of Entocort here which I intended to start right away when I got it and then decided I would use all the Balsalazide first before starting the Entocort. After reading, and reading, and more hours of reading about Entocort and every thing else on PP, I don’t know what to do. I don’t know if I should try going without any RX, or if I should get another refill of 270 Balsalazide, or switch to the Entocort. If I switch to the Entocort it looks like I would be on it for some time and then cut down before going off completely.
My first two weeks were really rough because if you look back you will see I was not convinced that I needed to be completely GF in order to heal the gut and stop the D. When I finally made up my mind that that was the only way to go, I still had problems because it is a learning experience in the beginning and I had so much to learn. Like margarine, Soy milk, Pam spray, yogurt, eating fish coated with flour and grilled, split pea soup, raw celery, aspartame, and the list goes on. Now I am on a GF, DF, SF diet and feel I am doing well with it. Have not lost any more weight.
I had a big flare this past weekend I would say from the yogurt I had been eating that needed to get out of my system and also because of stress. My husband threw a 70th Birthday Party for me on Saturday. He invited 50 guests to our house. It was suppose to be a surprise party but he ended up telling me because he needed help getting tables, chairs, and serving tables set up for all the food he was having catered. Talk about major stress! He said later he would never do that again. But anyway, all I had to eat from the catered food were 4 cold plain shrimp and 4 frozen strawberries. I had eaten a lot of vegetables and rice before everyone came and after they left I ate foods I was used to. Not even a crumb or lick of birthday cake. I sent a lot of food home with my daughter and sister. Also froze food in small containers for DH.
Tuesday I only had 1 soft BM and Wednesday two. I have read where so many people have done it with diet alone that I wonder if I should try it. I also wonder if I am improving because I am learning what I can and can not eat and really sticking to it, or is it the Balsalazide. And if I quit the RX will my D get worse again. So many questions? I know it has to be my decision but I need help making a decision. I am almost leaning towards trying it without any Rx and a faithful GF, DF, SF diet. If D gets really bad again and I can’t get it under control with diet alone, then go on the Entocort? The cost of the Entocort RX was a lot but if I don’t use it that’s not the only money I have wasted.
I am supposed to make an appointment with the GI but don’t want to because I feel he doesn’t know anything about the treatment of CC. He was the one who told me diet had nothing to do with this.
I gave some of my back ground history so you can see I have not been suffering with D for a long time. I feel I was diagnosed quite quickly. That is another reason I believe I may be able to do it with diet alone. I will be waiting to hear your suggestions regarding dugs or not. Then I will be able to make a decision.
Thanks so much for everyones support. I’ve done enough editing. It’s time to hit the send button.,
Need help making decision, Entocort or not?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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wonderwoman
- Rockhopper Penguin
- Posts: 574
- Joined: Wed Feb 17, 2010 8:59 pm
- Location: Sun City, AZ
Need help making decision, Entocort or not?
Charlotte
The food you eat can be either the safest and most powerful form of medicine, or the slowest form of poison. Ann Wigmore
The food you eat can be either the safest and most powerful form of medicine, or the slowest form of poison. Ann Wigmore
.
Hi Charlotte, getting your diagnosis within a month, that is really fast, wow!! Difficult question, what kind of medication to take and do it with or without medication in combination with diet. I have no experience with the other medication you are talking about. As far as I know works entocort the best with MC. I am one of the entocort users here. I use it because my GI prescribed it to me and it started working immediately. From day one, no D anymore. I am also on a diet, gf, sf, df, eg, yf (and a lot more I don't eat). My philosophy with the meds and diet is, the gut needs time to heal I hope to achieve that with my diet. What I understood from tex and others here, that takes a while. At least six months, sometimes up to a year. Especially if you have multiple intolerances and double MC genes (I am referring to the information on enterolab webpage) it takes longer. During the the time the gut is healing, I use the medication to suppresses the symptoms. That is the only thing entocort does, it does not cure anything. That is my strategy, based on my GI's advice, my own experience and most of all the information here. What makes it easier for me to use the medication is that I am only on the lowest dose.
How are doing at the moment on just diet alone, is it manageable? If not, you could just try and take one entocort a day and see if it makes a difference. It is just trying some things out and patience. It takes a while to find out what works best for you.
I hope others here will come up with better advice to help you with this, the only thing I have to offer is share my experiences with you.
Hi Charlotte, getting your diagnosis within a month, that is really fast, wow!! Difficult question, what kind of medication to take and do it with or without medication in combination with diet. I have no experience with the other medication you are talking about. As far as I know works entocort the best with MC. I am one of the entocort users here. I use it because my GI prescribed it to me and it started working immediately. From day one, no D anymore. I am also on a diet, gf, sf, df, eg, yf (and a lot more I don't eat). My philosophy with the meds and diet is, the gut needs time to heal I hope to achieve that with my diet. What I understood from tex and others here, that takes a while. At least six months, sometimes up to a year. Especially if you have multiple intolerances and double MC genes (I am referring to the information on enterolab webpage) it takes longer. During the the time the gut is healing, I use the medication to suppresses the symptoms. That is the only thing entocort does, it does not cure anything. That is my strategy, based on my GI's advice, my own experience and most of all the information here. What makes it easier for me to use the medication is that I am only on the lowest dose.
How are doing at the moment on just diet alone, is it manageable? If not, you could just try and take one entocort a day and see if it makes a difference. It is just trying some things out and patience. It takes a while to find out what works best for you.
I hope others here will come up with better advice to help you with this, the only thing I have to offer is share my experiences with you.
Balsalazide, (sold as the brand Colazal), is simply one of the many mesalamine-based medications, known as 5-aminosalicylic acid drugs, (5-ASA drugs, for brevity). Since this group of drugs is not known to significantly affect the adrenals, and they don't normally adversely affect the liver, I see no reason why they cannot be discontinued immediately, if needed, or if desired. IOW, the body does not develop a dependency on them, the way it does with the corticosteroids. That warning is presumably there on the label, simply as a matter of good policy, (to keep your physician informed of your treatment status).
It's a shame that your husband couldn't have arranged for some additional food that you could have eaten at the party, but in his defense, I have to say that very few family members truly understand this disease well enough to be able to do that, reliably. Good for you, for being able to decline the cake, and all the other treacherous goodies, because they would have surely made your reaction much worse.
It certainly might, but you are correct that a prompt diagnosis usually means less damage that needs to heal. Individual responses are impossible to predict, though, and remember that we all respond somewhat differently. Why do you want to stop taking the Balsalazide? If it's not causing symptoms, I believe that if I were in your shoes, I would continue what you are doing for a few more weeks, and then start reducing the balsalazide dosage, to see if your symptoms return. You can safely stop taking it abruptly, if you prefer, but removing the "cushion" provided by the med, might be more likely to trigger a full relapse of symptoms, whereas if you taper the dose down slowly, your symptoms might be more likely to return more gradually, which might allow you to recognize that your GI tract is not yet ready to perform normally without the med, and you could then increase the dosage without having to suffer from a full relapse of symptoms. At least that sounds plausible - how it might work in the real world, remains to be seen.
The point is, if the Balsalazide seems to be working, that's a big plus in it's favor. Remember that Entocort is effective in about 65 to 75 % of cases. Of the remaining percentage, a few do not respond to budesonide, but most of the rest, respond adversely, usually with fairly significant neurological symptoms, (dizziness, headaches, balance issues, vision problems, etc.). IOW, sometimes a bird in the hand, is worth two in the bush.
That said, I have a hunch that you might be able to do OK by diet alone, right now, and if not, you will soon be able to do so, probably within a matter of a few weeks. It's foolhardy to try to predict a time frame, though, because we are all so different in our responses to the diet, and in our responses to medications, also - to say nothing of the various stumbling blocks that can sabotage the best-laid diet plans, not the least of which can be additional food sensitivities, that sometimes show up after we think we have it "all figured out".
Good luck with whatever you decide to do, and please keep us updated on your progress.
Tex
That's generally true, according to our experience, but be aware that many GI docs feel that they have to stick with the label recommendation of limiting the treatment duration to only 6 weeks, or so. (Long-term studies of budesonide use, shows that the product is safe for long-term use, but that language has never been added to the label, so presumably, the manufacturer has never applied for, or at least never received, permission from the FDA, to add that to the label. Using Entocort EC for MC is an off-label use, anyway, (there are no medications labeled for treating MC), so a physician is at liberty to prescribe it as he sees fit, in the interest of the welfare of the patient.Charlotte wrote:If I switch to the Entocort it looks like I would be on it for some time and then cut down before going off completely.
It's a shame that your husband couldn't have arranged for some additional food that you could have eaten at the party, but in his defense, I have to say that very few family members truly understand this disease well enough to be able to do that, reliably. Good for you, for being able to decline the cake, and all the other treacherous goodies, because they would have surely made your reaction much worse.
It's probably the combination of diet changes and the Balaslazide, because it usually takes longer than just a few weeks for the diet to bring remission, though some people respond much faster than others.Charlotte wrote:I have read where so many people have done it with diet alone that I wonder if I should try it. I also wonder if I am improving because I am learning what I can and can not eat and really sticking to it, or is it the Balsalazide.
Charlotte wrote:And if I quit the RX will my D get worse again.
It certainly might, but you are correct that a prompt diagnosis usually means less damage that needs to heal. Individual responses are impossible to predict, though, and remember that we all respond somewhat differently. Why do you want to stop taking the Balsalazide? If it's not causing symptoms, I believe that if I were in your shoes, I would continue what you are doing for a few more weeks, and then start reducing the balsalazide dosage, to see if your symptoms return. You can safely stop taking it abruptly, if you prefer, but removing the "cushion" provided by the med, might be more likely to trigger a full relapse of symptoms, whereas if you taper the dose down slowly, your symptoms might be more likely to return more gradually, which might allow you to recognize that your GI tract is not yet ready to perform normally without the med, and you could then increase the dosage without having to suffer from a full relapse of symptoms. At least that sounds plausible - how it might work in the real world, remains to be seen.
The point is, if the Balsalazide seems to be working, that's a big plus in it's favor. Remember that Entocort is effective in about 65 to 75 % of cases. Of the remaining percentage, a few do not respond to budesonide, but most of the rest, respond adversely, usually with fairly significant neurological symptoms, (dizziness, headaches, balance issues, vision problems, etc.). IOW, sometimes a bird in the hand, is worth two in the bush.
That said, I have a hunch that you might be able to do OK by diet alone, right now, and if not, you will soon be able to do so, probably within a matter of a few weeks. It's foolhardy to try to predict a time frame, though, because we are all so different in our responses to the diet, and in our responses to medications, also - to say nothing of the various stumbling blocks that can sabotage the best-laid diet plans, not the least of which can be additional food sensitivities, that sometimes show up after we think we have it "all figured out".
Good luck with whatever you decide to do, and please keep us updated on your progress.
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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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
i have quite a few people (people who have been fairly healthy majority of their lives) ask me "cant you just take medication and the symptoms go away?"
they struggle to understand the concept of diet and ingredients for management and the day to day variances with symptoms (TK, the keeper, new partner is one of these)
I reply that yes there are medicaitons out there that would stop the symptoms, and there are different regimes of these meds, all of them have ramifications if taken long term, and i see the meds as a band aid solution, not a long term healthy lifestyle management solution.
yes i take the loperamide if i have to on days the digestion is not happy and i have important meetings.
I think the decision comes down to what works for you, for quality of life, what your body can handle, what you can afford
there is no right way or wrong way, there is what works for you....
they struggle to understand the concept of diet and ingredients for management and the day to day variances with symptoms (TK, the keeper, new partner is one of these)
I reply that yes there are medicaitons out there that would stop the symptoms, and there are different regimes of these meds, all of them have ramifications if taken long term, and i see the meds as a band aid solution, not a long term healthy lifestyle management solution.
yes i take the loperamide if i have to on days the digestion is not happy and i have important meetings.
I think the decision comes down to what works for you, for quality of life, what your body can handle, what you can afford
there is no right way or wrong way, there is what works for you....
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
This is for your doctor.......
I really like to raise that flag.Diet has everything to do with it. I know from experience.
I have been going with just diet to treat my LC because of Tex, Dr. Polly and other PP. It has been kind of slow but it sure has made all the difference in the world. I eat a pretty plain limited diet.
I saw my GI today and she thinks I am doing great. Sometimes yes and sometimes no. I told her about the PP who had a funeral for her food with gluten (before my time). I also talked about the Kubler-Ross stuff and said I don't think I'll ever get to the acceptance stage.
Now back to read the responses to you in this thread.........
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
BTW, I had an unknown abscess under a tooth that had already had a root canal. I sure wish I had kept a log of the timing of everything.
I did have pretty immediate success from just going gluten free until soy raised its ugly head.
Enterolab info will be helpful to you.
I did have pretty immediate success from just going gluten free until soy raised its ugly head.
Enterolab info will be helpful to you.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Gabes, IMO, that's some of the best advice that I've seen in a long time. Like love and war, anything is fair, when dealing with MC. If it brings relief from the symptoms, it's a good treatment.Gabes wrote:there is no right way or wrong way, there is what works for you....
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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wonderwoman
- Rockhopper Penguin
- Posts: 574
- Joined: Wed Feb 17, 2010 8:59 pm
- Location: Sun City, AZ
Thanks to everyone for their input. I took the advise of Tex and called in a refill for 270 Balsalazide today and will pick up Monday. Another thing I have done starting today is cut down from 9 capsules a day to 8 a day. Will do that for a week or so and then try 7 and then 6 etc. That amount should last about 6 weeks for a total of about three months of GF, DF, SF diet and RX. Will see how things are going at that time.
Can't say I have had any reaction to eating at IHOP on Wednesday. Had a beautiful BM this morning. Almost picture perfect. Almost wanted to call to DH and say "Come look what I made"!
I have been asked to take care of my 4 young grandkids 3/22-3/25, ages 4 to 10 years, so daughter can go out of town with husband on business. Don't know how the stress will affect me. The father was DX with Celiac in November so they do have GF foods in the house and know the program. I know that stress affected me the weekend of my birthday party. I'm sure I will have a setback.
Can't say I have had any reaction to eating at IHOP on Wednesday. Had a beautiful BM this morning. Almost picture perfect. Almost wanted to call to DH and say "Come look what I made"!
I have been asked to take care of my 4 young grandkids 3/22-3/25, ages 4 to 10 years, so daughter can go out of town with husband on business. Don't know how the stress will affect me. The father was DX with Celiac in November so they do have GF foods in the house and know the program. I know that stress affected me the weekend of my birthday party. I'm sure I will have a setback.
Charlotte
The food you eat can be either the safest and most powerful form of medicine, or the slowest form of poison. Ann Wigmore
The food you eat can be either the safest and most powerful form of medicine, or the slowest form of poison. Ann Wigmore
Charlotte, I know how stressful and tiring it can be to babysit grandkids......... Will your DH be with you? It makes a huge difference to have someone else there. Also, many of us have experienced the fatigue that often accompanies this nasty illness, and that adds to the stress level. Hopefully it will go smoothly.
I suspect that it's probably too late to back out now, but perhaps if you explained your health issues to your daughter and your need to minimize stress for the time it takes to heal, you could set the stage for less babysitting until you are ready. There is nothing wrong in being a bit "selfish" right now.
Rosie
I suspect that it's probably too late to back out now, but perhaps if you explained your health issues to your daughter and your need to minimize stress for the time it takes to heal, you could set the stage for less babysitting until you are ready. There is nothing wrong in being a bit "selfish" right now.
Rosie
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
Charlotte,
I am one of those here who have successfully treated my LC/CC w/o drugs. I would be happy to send you my protocol, but have also posted it here on PP.
I just added some information on bacteria on this thread: http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10895
The use of HRT, antibiotics, pain meds, etc. are linked to MC constantly. I believe they are being unfairly blamed. Why would we need them if we felt well in the first place?
I agree w/Rosie on the babysitting gig. Take care of YOU for awhile. Can only imagine it's long been your turn.
Connie
I am one of those here who have successfully treated my LC/CC w/o drugs. I would be happy to send you my protocol, but have also posted it here on PP.
I just added some information on bacteria on this thread: http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10895
The use of HRT, antibiotics, pain meds, etc. are linked to MC constantly. I believe they are being unfairly blamed. Why would we need them if we felt well in the first place?
I agree w/Rosie on the babysitting gig. Take care of YOU for awhile. Can only imagine it's long been your turn.
Connie
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
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wonderwoman
- Rockhopper Penguin
- Posts: 574
- Joined: Wed Feb 17, 2010 8:59 pm
- Location: Sun City, AZ
Doing well again today with diet and almost normal BM.
My daughter lives 65 miles from me through heavy traffic. I have not been there since November when I went over to help her with a quilting project. The next time I saw them was when they were here for my birthday last weekend. I hardly got to enjoy the children then because there were 50 guests here for the party. Earlier this week my daughter called and asked me to care for the children this coming week and I said I couldn't because of so many things on my calendar that week. I said the next week would be better. I only said that because I knew that her husband already had his plane tickets. She said that wouldn't help her because she needed someone this week. Then she called back and said his conference with the client was moved to the following week. I hesitated before answering, what could I say. The children are very good. They are home schooled and very well mannered. She is going to arrange for the 4 & 10 year old to sleep at a friends house one night and the girls 7 & 8 another night. It will all work out and I know I will probably have a set back but will manage.
NO! DH will not go along. I know better than to even ask. I know the answer.
My daughter lives 65 miles from me through heavy traffic. I have not been there since November when I went over to help her with a quilting project. The next time I saw them was when they were here for my birthday last weekend. I hardly got to enjoy the children then because there were 50 guests here for the party. Earlier this week my daughter called and asked me to care for the children this coming week and I said I couldn't because of so many things on my calendar that week. I said the next week would be better. I only said that because I knew that her husband already had his plane tickets. She said that wouldn't help her because she needed someone this week. Then she called back and said his conference with the client was moved to the following week. I hesitated before answering, what could I say. The children are very good. They are home schooled and very well mannered. She is going to arrange for the 4 & 10 year old to sleep at a friends house one night and the girls 7 & 8 another night. It will all work out and I know I will probably have a set back but will manage.
NO! DH will not go along. I know better than to even ask. I know the answer.
Charlotte
The food you eat can be either the safest and most powerful form of medicine, or the slowest form of poison. Ann Wigmore
The food you eat can be either the safest and most powerful form of medicine, or the slowest form of poison. Ann Wigmore
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wonderwoman
- Rockhopper Penguin
- Posts: 574
- Joined: Wed Feb 17, 2010 8:59 pm
- Location: Sun City, AZ
Have not written for a while but have been reading posts every day.
I expected to hear from Enterolab today but haven’t. I called them and they said next week. The wait is so hard.
I am so pleased to announce that I have had one almost normal BM each day for the past three days and for the week before that it was two a day. Last Friday I reduced my Balsalazide RX from 9 a day to 8. I plan to stay on 8 for this next week and then reduce it to 7 a day.
Last night I went to a St Patrick’s Day party and took a piece of GF chocolate cake that my daughter made from scratch for my birthday. I did break down and have two pieces of cream filled chocolates and have not had any reaction yet.
The good news is I don’t have to go to my daughters house next week to take care of my 4 grandchildren. My daughter was not able to use her frequent flier miles for a seat on her husbands flight and a ticket is $800. which she didn’t want to spend. So she is staying home. I am relieved as I know the stress would get to me and I would relapse. It is much easier to stick to my food plan at home.
I am so fortunate to have grocery stores close to me that have a large selection of GF foods. The items are very well labeled. I purchased a GF Brownie mix and made it tonight after taking the pork chops out of the oven.
After dinner DH and I went to the Mall and walked around. I wanted something sweet to eat so bad. Went into a chocolate store and walked back out. Husband stopped and got a Dairy Queen on the way home. I began feeling very sorry for myself and thought when I get home I’ll have an old frozen banana. Then I remembered I had chocolate sorbet in the freezer. When we got home I had some sorbet with a fresh brownie and I was happy again. I will have to check the freezer case to see what other deserts I can have. I do have a sweet tooth.
Thanks for all the support on this web site.
I am so pleased to announce that I have had one almost normal BM each day for the past three days and for the week before that it was two a day. Last Friday I reduced my Balsalazide RX from 9 a day to 8. I plan to stay on 8 for this next week and then reduce it to 7 a day.
Last night I went to a St Patrick’s Day party and took a piece of GF chocolate cake that my daughter made from scratch for my birthday. I did break down and have two pieces of cream filled chocolates and have not had any reaction yet.
The good news is I don’t have to go to my daughters house next week to take care of my 4 grandchildren. My daughter was not able to use her frequent flier miles for a seat on her husbands flight and a ticket is $800. which she didn’t want to spend. So she is staying home. I am relieved as I know the stress would get to me and I would relapse. It is much easier to stick to my food plan at home.
I am so fortunate to have grocery stores close to me that have a large selection of GF foods. The items are very well labeled. I purchased a GF Brownie mix and made it tonight after taking the pork chops out of the oven.
After dinner DH and I went to the Mall and walked around. I wanted something sweet to eat so bad. Went into a chocolate store and walked back out. Husband stopped and got a Dairy Queen on the way home. I began feeling very sorry for myself and thought when I get home I’ll have an old frozen banana. Then I remembered I had chocolate sorbet in the freezer. When we got home I had some sorbet with a fresh brownie and I was happy again. I will have to check the freezer case to see what other deserts I can have. I do have a sweet tooth.
Thanks for all the support on this web site.
Charlotte
The food you eat can be either the safest and most powerful form of medicine, or the slowest form of poison. Ann Wigmore
The food you eat can be either the safest and most powerful form of medicine, or the slowest form of poison. Ann Wigmore
