I’m in continental Ecuador now to do some medical checks. I saw my gastroenterologist yesterday and it was the first appointment since January when I was diagnosed with LC. I explained about my improvements on the GF, DF and SF diet and how my BMs are mostly normal although with occasional constipation. I mentioned that I’m still suffering from nausea, fatigue, brain fog, body aches and the worst of all, abdominal pain. I told him that on average I feel like a 7/10 these days whereas in January when I was really bad, a 9/10. I mentioned how much I had learned from this forum and he didn’t seem to be too offended that I probably know more than he does about treating the disease with diet!
My doctor now seems to be sure that I am celiac - he wrote it on my insurance form anyway. Thankfully (because I was dreading it) he doesn't want me to have either another endoscopy or colonoscopy but he does want me to try meds for the first time since I was diagnosed. Below what he’s given me for a prescription. I would love a second opinion as I’m pretty curious of his reasons for prescribing me these. Its pretty standard practice in Ecuador that medics give you the meds to get better but don't really explain how they relate to your symptoms. I tried to get a bit of an explanation but I am limited with my Spanish medical vocabulary abilities.
a) an oral magaldrate called “Riopan”
- I searched through the forums and found just one search item which mentioned it being used for lactose intolerance but I couldn’t find anything else.
b) Levosulpiride “Dislep”
- I couldn’t find any traces of this in a forum search. Here’s a link to the chemical compound: http://en.wikipedia.org/wiki/Levosulpiride
c) “Creon” Digestive Enzymes.
- I found quite a few posts about this and it seems like these meds have little chance of helping symptoms apart from when you are eating out and worried about cross contimination. I also noticed many U.S forum users had issues with the price which isn't so bad here (about 50 cents a tablet which I could cover 80% of with my insurance).
He said A and B would help with gastritis (which was found to be light chronic in January’s endoscopy) and C with gastritis and LC but I’m not sure about any of them to be honest. I'm also doing standard parasite testing and full blood work for thyroid issues which I'm happy with doing since two out of four of my siblings have thyroid problems and I've read about the increased likelihood of me also having issues because of LC prevalence.
Thanks for all your help as always!
James
Feedback appreciated on Doc's meds prescription
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JamesEcuador
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- Joined: Tue May 13, 2014 6:59 pm
Hi James,
Riopan is simply an antacid.
Levosulpiride Dislep appears to be quite effective in treating indigestion (dyspepsia) and reflux issues:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1936295/
A few members here swear by digestive enzymes, while others (including me) swear at them
. In some cases they might help digestion, because it is true that the production of digestive enzymes is compromised when MC is active, but the reason they are compromised is because of the inflammation. If the inflammation is controlled, then normal digestive enzyme production virtually always resumes. Thus digestive enzymes are just another class of items aimed at treating symptoms, rather than treating the cause of the symptoms.
Chances are, none of these will hurt your health, but they might not help much, either. Then again, they might.
I tried an expensive digestive enzyme mix back when I was recovering, and it promptly made me as sick as a dog. After I vomited up everything in my stomach, I had the dry heaves for the rest of the day. My stomach burned for over 3 days, and on the fourth day I finally got up the nerve to try a little solid food again. But I think that most people here who have tried digestive enzymes have had better luck. YMMV.
The thyroid workup is a very good idea, because constipation is a classic hypothyroid symptom, and constipation can definitely cause the symptoms that you listed in your post.
Tex
Riopan is simply an antacid.
Levosulpiride Dislep appears to be quite effective in treating indigestion (dyspepsia) and reflux issues:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1936295/
A few members here swear by digestive enzymes, while others (including me) swear at them
. In some cases they might help digestion, because it is true that the production of digestive enzymes is compromised when MC is active, but the reason they are compromised is because of the inflammation. If the inflammation is controlled, then normal digestive enzyme production virtually always resumes. Thus digestive enzymes are just another class of items aimed at treating symptoms, rather than treating the cause of the symptoms.Chances are, none of these will hurt your health, but they might not help much, either. Then again, they might.
I tried an expensive digestive enzyme mix back when I was recovering, and it promptly made me as sick as a dog. After I vomited up everything in my stomach, I had the dry heaves for the rest of the day. My stomach burned for over 3 days, and on the fourth day I finally got up the nerve to try a little solid food again. But I think that most people here who have tried digestive enzymes have had better luck. YMMV.The thyroid workup is a very good idea, because constipation is a classic hypothyroid symptom, and constipation can definitely cause the symptoms that you listed in your post.
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 James,
Re fatigue: Make sure you also have your Doctor check your iron levels. Make sure to look at your ferritin scores. Low iron is less common in men for obvious reasons but since I've been on the forum I think there have been a couple of men that have had to take iron supplements in a maintenance dose. Do not supplement without test scores as it can be dangerous.
Re: brain fog: this was truly on of my worst MC symptoms. I struggled with doing math equations on my job (for months) and proposals on my job. The over the counter vitamin version of Metanx really helped me here. Here is a thread in which it is discussed. http://www.perskyfarms.com/phpBB2/viewtopic.php?t=18500 Tex had talked about it for peripheral neuropathy and "aging" of the mind.
I was truly suffering and wasn't getting anywhere with the Doctors. They laughed at me and chalked it up to menopause. If you google Metanx and brain fog you will get discussion on some other forums---I can't remember which ones I looked at. Anyways, I thought what do I have to lose so I tried the over the counter version. At the end of 3 weeks I had TRULY DRAMATIC results. My mind "cleared" and was back to normal. I lowered my dose after several more weeks and now take a very low maintenance dose. I think my body wasn't "uploading B vitamins" and thus my brain suffered. If you search Metanx on this forum you will get more detail info in threads.
Not sure about your other questions.
Brandy
Re fatigue: Make sure you also have your Doctor check your iron levels. Make sure to look at your ferritin scores. Low iron is less common in men for obvious reasons but since I've been on the forum I think there have been a couple of men that have had to take iron supplements in a maintenance dose. Do not supplement without test scores as it can be dangerous.
Re: brain fog: this was truly on of my worst MC symptoms. I struggled with doing math equations on my job (for months) and proposals on my job. The over the counter vitamin version of Metanx really helped me here. Here is a thread in which it is discussed. http://www.perskyfarms.com/phpBB2/viewtopic.php?t=18500 Tex had talked about it for peripheral neuropathy and "aging" of the mind.
I was truly suffering and wasn't getting anywhere with the Doctors. They laughed at me and chalked it up to menopause. If you google Metanx and brain fog you will get discussion on some other forums---I can't remember which ones I looked at. Anyways, I thought what do I have to lose so I tried the over the counter version. At the end of 3 weeks I had TRULY DRAMATIC results. My mind "cleared" and was back to normal. I lowered my dose after several more weeks and now take a very low maintenance dose. I think my body wasn't "uploading B vitamins" and thus my brain suffered. If you search Metanx on this forum you will get more detail info in threads.
Not sure about your other questions.
Brandy
James,
Regarding the Metanx that Brandy mentioned. It's a combination of the active forms of vitamins B-12, B-9, and B-6. Some of us have problems converting the inactive forms into the active forms of these vitamins so that they can be utilized by the body, especially anyone who happens to have a the MTHFR gene mutation, because that mutation interferes with methylation (conversion of folic acid into the active form, methylfolate) for example.
In the U. S., Metanx is available by prescription only, because it's used to treat the peripheral neuropathy caused by diabetes. As some of us have discovered, it also treats the brain fog and peripheral neuropathy caused by gluten sensitivity (but of course the doctors here don't realize that gluten can cause peripheral neuropathy
) My previous GP used Metanx himself, to prevent cognitive decline as he aged, so he didn't hesitate to write a prescription. For all I know, it might be available over-the-counter in Equador.
Tex
Regarding the Metanx that Brandy mentioned. It's a combination of the active forms of vitamins B-12, B-9, and B-6. Some of us have problems converting the inactive forms into the active forms of these vitamins so that they can be utilized by the body, especially anyone who happens to have a the MTHFR gene mutation, because that mutation interferes with methylation (conversion of folic acid into the active form, methylfolate) for example.
In the U. S., Metanx is available by prescription only, because it's used to treat the peripheral neuropathy caused by diabetes. As some of us have discovered, it also treats the brain fog and peripheral neuropathy caused by gluten sensitivity (but of course the doctors here don't realize that gluten can cause peripheral neuropathy
) My previous GP used Metanx himself, to prevent cognitive decline as he aged, so he didn't hesitate to write a prescription. For all I know, it might be available over-the-counter in Equador.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 Connie,
I'm not sure if Brandy actually found an OTC version, but I've never seen one that was actually equivalent. There's supposedly an OTC version offered, but the report I read noted that it did not contain the active forms of all of the vitamins, and as far as I'm concerned, that makes it virtually worthless, because the main benefit of Metanx is that it offers the active form of all 3 vitamins, in the correct proportions. If they are out of balance, or any of them are in the inactive form, that can cause problems.
That said, the information on how to "make up" an OTC version, that's listed in a post in this thread, is probably what she was referring to:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=18500
Note that the Foltanx that was mentioned by Jean is a generic version that appears to contain the same active ingredients as Metanx, but apparently (as is the case with many generic versions) one or more of the inactive ingredient in the pills appear to have caused problems for her.
Tex
I'm not sure if Brandy actually found an OTC version, but I've never seen one that was actually equivalent. There's supposedly an OTC version offered, but the report I read noted that it did not contain the active forms of all of the vitamins, and as far as I'm concerned, that makes it virtually worthless, because the main benefit of Metanx is that it offers the active form of all 3 vitamins, in the correct proportions. If they are out of balance, or any of them are in the inactive form, that can cause problems.
That said, the information on how to "make up" an OTC version, that's listed in a post in this thread, is probably what she was referring to:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=18500
Note that the Foltanx that was mentioned by Jean is a generic version that appears to contain the same active ingredients as Metanx, but apparently (as is the case with many generic versions) one or more of the inactive ingredient in the pills appear to have caused problems for her.
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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JamesEcuador
- Adélie Penguin
- Posts: 54
- Joined: Tue May 13, 2014 6:59 pm
Hi Connie and James,
I had a member private message me to ask specifically what I had taken in the past and it has been two years so I thought I'd pull up the old data and hopefully Tex can help out too if anyone has any questions. Brain fog is common with MC and most folks seem to get better on their own but my symptoms were severe and kept getting worse. My symptoms when I started this trial was 12 months of brain fog that was not getting better, i.e. was getting worse, 6 months problems doing math equations, problems typing (transposed letters on the keyboard when I type), several days of tingling in right arm to fingers--this only happened several days, ataxia, and short term memory loss. ( I wasn't aware of the memory loss at this at the time but the boyfriend told me about this.)
I think this is the infamous thread that convinced me to try the over the counter vitamin equivalent of Metanx:
http://www.perskyfarms.com/phpBB2/viewt ... ght=metanx
This is the thread that talks about the beginning of my trial.
http://www.perskyfarms.com/phpBB2/viewt ... ght=metanx
I took everything at once in the a.m. It was a pile up of pills....like 8 or 10 pills over the counter to meet the 1 pill of Metanx.
This is a quote I pulled from a thread dated August 2012. THIS IS WHAT I STARTED TAKING WHICH WAS A CLOSE EQUIVALENT TO THE 1 PILL OF METANX.
These are some other threads. I think one discusses where a cut back a bit on the vitamins.
http://www.perskyfarms.com/phpBB2/viewt ... ght=metanx
http://www.perskyfarms.com/phpBB2/viewt ... sc&start=0
This thread from Tex gives some other over the counter options to buy the separate vitamins to make the equivalent of 1 Metanx pill.
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=18500
The three vitamins work in sync with each other so it is important to get the amounts as close to the Metanx proportions/equivalents as possible. I bought everything from Vitamin Shoppe but there are other options on line. The P5P is tougher to find. If you can't find anything else go with the Solgar.
TWO Year update: I now take 400 mcg of Solgar metafolin, 500 mcg methylcobalimin B12 and 50 mg of P5P every other day. (NOTE: THIS IS NOT IN THE RIGHT PROPORTION BUT IT SEEMS TO WORK OKAY FOR ME.) On the other day I take 1 Bcomplex "50" to get the other B's.
When I don't take anything for 3-4 days I start having memory issues. These low doses seem to work okay for now but I suspect when I'm in my 70's-80's I'll be back up to the Metanx levels (I'm 53 now). Another benefit is the P5P(B6) seems to control histamine issues. B6 is a precursor for DAO. I find if I don't take the P5P for 4 days I start having histamine issues (the runny nose thing). When I take the P5P every other day I have no histamine issues.
This gets confusing hopefully Tex can help me out if there are more questions.
Brandy
I had a member private message me to ask specifically what I had taken in the past and it has been two years so I thought I'd pull up the old data and hopefully Tex can help out too if anyone has any questions. Brain fog is common with MC and most folks seem to get better on their own but my symptoms were severe and kept getting worse. My symptoms when I started this trial was 12 months of brain fog that was not getting better, i.e. was getting worse, 6 months problems doing math equations, problems typing (transposed letters on the keyboard when I type), several days of tingling in right arm to fingers--this only happened several days, ataxia, and short term memory loss. ( I wasn't aware of the memory loss at this at the time but the boyfriend told me about this.)
I think this is the infamous thread that convinced me to try the over the counter vitamin equivalent of Metanx:
http://www.perskyfarms.com/phpBB2/viewt ... ght=metanx
This is the thread that talks about the beginning of my trial.
http://www.perskyfarms.com/phpBB2/viewt ... ght=metanx
I took everything at once in the a.m. It was a pile up of pills....like 8 or 10 pills over the counter to meet the 1 pill of Metanx.
This is a quote I pulled from a thread dated August 2012. THIS IS WHAT I STARTED TAKING WHICH WAS A CLOSE EQUIVALENT TO THE 1 PILL OF METANX.
Around August I added 2000 mcg daily of Methylcobalimin (absorbable B12) Jarrow brand, 50 mg every other day of P5P Pyridoxal 5 Phosphate (absorbable B6)Solgar brand, and 2400 mcg daily of metafolin (absorbable folate)Solgar brand. Within 2 weeks I'd had dramatic results. The brain fog that I'd had round the clock for 12 months was significantly better and the ataxia was improved and my mind was clearer. Three months out I'm finally having energy to go out and do evening activities. I still get fatigue here and there but overall the vitamins were a huge benefit.
These are some other threads. I think one discusses where a cut back a bit on the vitamins.
http://www.perskyfarms.com/phpBB2/viewt ... ght=metanx
http://www.perskyfarms.com/phpBB2/viewt ... sc&start=0
This thread from Tex gives some other over the counter options to buy the separate vitamins to make the equivalent of 1 Metanx pill.
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=18500
The three vitamins work in sync with each other so it is important to get the amounts as close to the Metanx proportions/equivalents as possible. I bought everything from Vitamin Shoppe but there are other options on line. The P5P is tougher to find. If you can't find anything else go with the Solgar.
TWO Year update: I now take 400 mcg of Solgar metafolin, 500 mcg methylcobalimin B12 and 50 mg of P5P every other day. (NOTE: THIS IS NOT IN THE RIGHT PROPORTION BUT IT SEEMS TO WORK OKAY FOR ME.) On the other day I take 1 Bcomplex "50" to get the other B's.
When I don't take anything for 3-4 days I start having memory issues. These low doses seem to work okay for now but I suspect when I'm in my 70's-80's I'll be back up to the Metanx levels (I'm 53 now). Another benefit is the P5P(B6) seems to control histamine issues. B6 is a precursor for DAO. I find if I don't take the P5P for 4 days I start having histamine issues (the runny nose thing). When I take the P5P every other day I have no histamine issues.
This gets confusing hopefully Tex can help me out if there are more questions.
Brandy
Brandy,
You did a good job. I can't think of anything to add, except:
with that. I have a hunch that vitamin D plays a big role in this also, because it pretty much controls the throttle on the immune system, but now that I've been taking Metanx for over 5 years, and I finally have managed to push my vitamin D level back up to close to the top of the "normal" range, even though we're in the middle of ragweed pollen season, and the pollen level is currently high, I have no significant symptoms. In the past, ragweed ate my lunch, and I had to take an antihistamine daily, in order to be able to see what I was doing, and prevent having to wipe my nose constantly.
Could pollen allergies be symptoms of vitamin insufficiencies? I note that when my vitamin D level was in the 40–60 ng/ml range for a couple of years, my allergies were not as bad as they had been previously, but still bad enough to prompt me to take an antihistamine on days when the level was high. Giant ragweeds started blooming about mid-August here, but I haven't felt the need to take an antihistamine since my battle with chiggers during the early summer. I hardly know how to take this. I hope it doesn't put Allegra and Kleenex in a business slump.
Tex
You did a good job. I can't think of anything to add, except:
Another benefit is the P5P(B6) seems to control histamine issues. B6 is a precursor for DAO. I find if I don't take the P5P for 4 days I start having histamine issues (the runny nose thing). When I take the P5P every other day I have no histamine issues.
with that. I have a hunch that vitamin D plays a big role in this also, because it pretty much controls the throttle on the immune system, but now that I've been taking Metanx for over 5 years, and I finally have managed to push my vitamin D level back up to close to the top of the "normal" range, even though we're in the middle of ragweed pollen season, and the pollen level is currently high, I have no significant symptoms. In the past, ragweed ate my lunch, and I had to take an antihistamine daily, in order to be able to see what I was doing, and prevent having to wipe my nose constantly.Could pollen allergies be symptoms of vitamin insufficiencies? I note that when my vitamin D level was in the 40–60 ng/ml range for a couple of years, my allergies were not as bad as they had been previously, but still bad enough to prompt me to take an antihistamine on days when the level was high. Giant ragweeds started blooming about mid-August here, but I haven't felt the need to take an antihistamine since my battle with chiggers during the early summer. I hardly know how to take this. I hope it doesn't put Allegra and Kleenex in a business slump.
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.