I went for a follow up with my MD today, first visit since being dx with LC. He was very compassionate & eager to listen. He even said you are way over my head with this.
I asked him to give me a script for the metanx, he read up on it for a minute and happily wrote it out. He also said he'd heard a lot of good things about my GI. Of course he had my results from the GI right in front of him. It was a good visit, I just wanted to touch base with him about what meds I can and can't take.
I took the script to the pharmacy and it is only going to be $17, I was thrilled. I also made sure it was not the generic.
Love,
Connie
follow up with my doctor
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follow up with my doctor
Live, Laugh & Love Much
You have a good reason to be. You obviously have a very understanding doctor, and your insurance is apparently a lot better than mine, because mine does not cover Metanx at all. My last refill was $199.26, for only 75 capsules. That's $79.70 per month.Connie wrote:I took the script to the pharmacy and it is only going to be $17, I was thrilled.
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.
Tex,
They had to order it and it won't be there until in the morning. That makes me anxious because my insurance is not that hot. It's through the state. I'll let you know when I pick it up. The first price they told me was $12 and I immediately said I don't want the generic. When she gave me the price for the other she did say that a lot of people did not like the generic. We'll see.......
Thanks,
Connie
They had to order it and it won't be there until in the morning. That makes me anxious because my insurance is not that hot. It's through the state. I'll let you know when I pick it up. The first price they told me was $12 and I immediately said I don't want the generic. When she gave me the price for the other she did say that a lot of people did not like the generic. We'll see.......
Thanks,
Connie
Live, Laugh & Love Much
I took 1 per day for about 4 and a half years, and then dropped to 1 every other day. If I actually had diabetes, and I were using Metanx to treat the peripheral neuropathy that is associated with diabetes, or if I had been diagnosed with endothelial dysfunction, I might take 2 per day for a while, until my blood levels of those 3 vitamins had a chance to increase, but I never used that dose.
Tex
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,
Great news! Great price! That is much cheaper than assembling the vitamin version. Following Tex's model I took about the 1 pill equivalent for about 4 or 6 months. ( I can't remember.) It kicked the brain fog to the curb in about 2 weeks. I reduced the dose at the 4 or 6 month mark when I started getting some edgyness. (I was around 51 at the time). There was discussion on the neuro talk forum that it could take 6 months to work but I think they may have more serious conditions.
Brandy
Great news! Great price! That is much cheaper than assembling the vitamin version. Following Tex's model I took about the 1 pill equivalent for about 4 or 6 months. ( I can't remember.) It kicked the brain fog to the curb in about 2 weeks. I reduced the dose at the 4 or 6 month mark when I started getting some edgyness. (I was around 51 at the time). There was discussion on the neuro talk forum that it could take 6 months to work but I think they may have more serious conditions.
Brandy
This interesting, Tex. I seem to be suffering from peripheral neuropathy. I do not have diabetes but have had a numb right foot and pain in my toes on that foot and the other occasionally. I have an appointment with a neurologist next month. Tell me more.tex wrote:I took 1 per day for about 4 and a half years, and then dropped to 1 every other day. If I actually had diabetes, and I were using Metanx to treat the peripheral neuropathy that is associated with diabetes, or if I had been diagnosed with endothelial dysfunction, I might take 2 per day for a while, until my blood levels of those 3 vitamins had a chance to increase, but I never used that dose.
Tex
Summer
Hi Summer,
It's kind of a long story, but here goes:
I first started noticing serious symptoms roughly 16 or 17 years ago. For a couple of years, I thought I was the unluckiest guy in the world because I kept having either relapses of the flu, or somewhat regular episodes of food poisoning. The sessions would begin with nausea and vomiting, immediately followed by uncontrollable diarrhea. but after a few days to a week of D, I would recover, and things would be fine for a while. When I was reacting, every bone in my body would ache, and so would every muscle (similar to the flu), and I would have either headaches or migraines.
At first this only happened about once every couple of months, but after about a year, I began getting sick more often. And then one day the watery D started and wouldn't stop. That's when I went to see my doctor, who immediately diagnosed me with colon cancer, and sent me to a gastroenterologist who agreed with that diagnosis. They were both wrong, fortunately, but for several months the GI doc ran me through just about every test and scan they had at the clinic before giving up on that diagnosis and informing me that there was nothing wrong with me.
Of course since he was expecting to find a tumor, he failed to take biopsy samples during both the initial sigmoidoscopy and the eventual colonoscopy exams. At the time, I didn't know any better either. By then, my arthritis symptoms were so bad that some of my fingers were growing crooked and twisted, with extremely painful, swollen joints, and my knees were so bad that I often had to use a cane just to get around. On the worst days, it took 2 canes.
I started keeping a food/reaction journal/diary, and after reading an article in the Wall Street Journal about the invention of the "Pill Camera" and how it was being used to help diagnose issues such as celiac disease, I began to search the Internet for information on food sensitivities. I couldn't find much really good information. When I looked at my food diary, I couldn't see any correlation between gluten and my reactions — anything and everything seemed to make me sick, at random.
But I decided to cut gluten out of my diet anyway (permanently, fortunately, otherwise I would have never made any progress), and I repeatedly did trials where I avoided certain foods for a couple of weeks or so and recorded the results. After a year and a half of that it finally dawned on me that if I was ever going to get out of that rut I was going to have to do something drastic, so I cut out every food that my testing had shown to be suspicious. Within 2 weeks I was in remission. I followed that very restrictive diet for a little over a year and a half, and then I was able to begin adding foods back into my diet.
Back then, I had never seen an internet discussion board dedicated to MC, and I had never heard of EnteroLab, so I was extremely lucky to find my way out of that desolate pit. I stumbled across the old MC discussion board that had been founded several years earlier by Sally Read, roughly 6 months after my remission, and when I started reading there I immediately realized that, "Hey, these people are all just like me". That was when I finally had a name to go with my disease.
Unfortunately, despite the fact that the most wonderful people in the world hung out on that site, some of the most irrational, inconsiderate, and aggravating people in the world also hung out there, and the discussion board eventually became dysfunctional, mostly because of lack of proper administration/moderation. That's when we started this board, so that we would have a place where we could continue to share experiences and compare notes.
Fast-forward a few years to July of 2009, when I had an apparent TIA-like event. My right arm and the right side of my face (right down to the right half of my tongue) became numb one morning. I took a couple of aspirin and drove 20 miles to the ER. They couldn't see any real evidence of stroke (no significant lost of strength or dexterity), but they couldn't rule it out either, so they called it a TIA. Several of my friends here insisted that I should see a neurologist to try to verify whether or not I actually had a mini-stroke, so a month later I saw a neurologist.
He immediately noticed my gait issues, and peripheral neuropathy (my knees and ankles had virtually no reflex response), and upon questioning, yes, I had noticed a few hand tremors occasionally in the past. So he promptly diagnosed me with Parkinson's disease, and sent me for all sorts of tests (including a brain MRI), the results of which were mostly inconclusive. I couldn't convince him that my neurological symptoms were due to years of untreated gluten sensitivity, because he had never heard of it.
He prescribed Azilect (rasagiline), which is an irreversible monoamine oxidase inhibitor, and which has a very dangerous side effect risk that he didn't warn me about, namely it interacts with many hundreds of other medications, but specifically it interacts with antihistamines, and the worst interaction apparently is associated with a certain antihistamine that I was using for pollen allergies. The interaction causes serious blood pressure spikes, and I had been taking the drug for about 6 months when I noticed what I was having major BP spikes. Unfortunately, stopping the use of the drug doesn't stop the reaction, because since the monoamine oxidase inhibitor effect is irreversible, the body has to use up the remaining supplies already in circulation, so the effect can last for months after the drug is withdrawn.
Since an intestinal bleeding disorder runs in my father's side of the family anyway, the combination was more than my body could handle, and about a week after I first noticed the BP spikes (I'm talking spikes in the vicinity of 200 mmHg), I woke up with massive colonic bleeding. I actually went to the ER the week before, but of course there was nothing they could do, so I had to let it run its course. Anyway, the net result was that they had to remove my colon in order to keep me from bleeding to death (because I was bleeding faster than they could replace the blood). So my advice to anyone taking an irreversible monoamine inhibitor is to be mighty careful about taking any of the drugs that they interact with (and as I recall, they are known to interact with about 600 drugs).
Oops, I got sidetracked, didn't I.
The good news is that the neurologist gave me samples of Metanx, and after taking it for a year or 2, my peripheral neuropathy symptoms improved significantly, and so did my balance. For a timeline reference, the first TIA-like event happened in July of 2009. In late January of 2010 I first noticed the BP spike issues, and on February 2, I had the emergency surgery that saved my life in exchange for my colon. When I had a second TIA-like event in May of that year, another neurologist checked me out while I was in the hospital, and agreed that since my lower limb reflexes were much improved, my gait and balance were much better, and I could feel a pin prick pretty much anywhere on my feet, I didn't have Parkinson's disease after all.
But get this — even though she didn't have the foggiest idea what had caused, or was causing my neurological issues, she refused to admit that they could be due to untreated gluten sensitivity (because she claimed she had never heard of it). And she was the head of the neurology department at a major teaching hospital. 
Dr. Mario Hadjivassiliou had published reams of data on the topic at least 8 years prior to this, but she had never heard of it (nor had the student who was with her at the time).
Gluten sensitivity as a neurological illness
These days, my left arm is approximately half-numb, virtually all of the time. I probably need to increase my dose of Metanx to address that, but one of the reasons why I lowered my dose was because I have an increasingly-bothersome breathing issue — I can't take a deep breath most of the time, suggesting CNS issues associated with diaphragm control. I need to see if I have a MTHFR gene mutation that's affecting methylation.
Sorry for the long post, but I hope that some of it addresses any questions that you might have in mind.
Tex
It's kind of a long story, but here goes:
I first started noticing serious symptoms roughly 16 or 17 years ago. For a couple of years, I thought I was the unluckiest guy in the world because I kept having either relapses of the flu, or somewhat regular episodes of food poisoning. The sessions would begin with nausea and vomiting, immediately followed by uncontrollable diarrhea. but after a few days to a week of D, I would recover, and things would be fine for a while. When I was reacting, every bone in my body would ache, and so would every muscle (similar to the flu), and I would have either headaches or migraines.
At first this only happened about once every couple of months, but after about a year, I began getting sick more often. And then one day the watery D started and wouldn't stop. That's when I went to see my doctor, who immediately diagnosed me with colon cancer, and sent me to a gastroenterologist who agreed with that diagnosis. They were both wrong, fortunately, but for several months the GI doc ran me through just about every test and scan they had at the clinic before giving up on that diagnosis and informing me that there was nothing wrong with me.
Of course since he was expecting to find a tumor, he failed to take biopsy samples during both the initial sigmoidoscopy and the eventual colonoscopy exams. At the time, I didn't know any better either. By then, my arthritis symptoms were so bad that some of my fingers were growing crooked and twisted, with extremely painful, swollen joints, and my knees were so bad that I often had to use a cane just to get around. On the worst days, it took 2 canes.
I started keeping a food/reaction journal/diary, and after reading an article in the Wall Street Journal about the invention of the "Pill Camera" and how it was being used to help diagnose issues such as celiac disease, I began to search the Internet for information on food sensitivities. I couldn't find much really good information. When I looked at my food diary, I couldn't see any correlation between gluten and my reactions — anything and everything seemed to make me sick, at random.
But I decided to cut gluten out of my diet anyway (permanently, fortunately, otherwise I would have never made any progress), and I repeatedly did trials where I avoided certain foods for a couple of weeks or so and recorded the results. After a year and a half of that
it finally dawned on me that if I was ever going to get out of that rut I was going to have to do something drastic, so I cut out every food that my testing had shown to be suspicious. Within 2 weeks I was in remission. I followed that very restrictive diet for a little over a year and a half, and then I was able to begin adding foods back into my diet.Back then, I had never seen an internet discussion board dedicated to MC, and I had never heard of EnteroLab, so I was extremely lucky to find my way out of that desolate pit. I stumbled across the old MC discussion board that had been founded several years earlier by Sally Read, roughly 6 months after my remission, and when I started reading there I immediately realized that, "Hey, these people are all just like me".
That was when I finally had a name to go with my disease.Unfortunately, despite the fact that the most wonderful people in the world hung out on that site, some of the most irrational, inconsiderate, and aggravating people in the world also hung out there, and the discussion board eventually became dysfunctional, mostly because of lack of proper administration/moderation. That's when we started this board, so that we would have a place where we could continue to share experiences and compare notes.
Fast-forward a few years to July of 2009, when I had an apparent TIA-like event. My right arm and the right side of my face (right down to the right half of my tongue) became numb one morning. I took a couple of aspirin and drove 20 miles to the ER. They couldn't see any real evidence of stroke (no significant lost of strength or dexterity), but they couldn't rule it out either, so they called it a TIA. Several of my friends here insisted that I should see a neurologist to try to verify whether or not I actually had a mini-stroke, so a month later I saw a neurologist.
He immediately noticed my gait issues, and peripheral neuropathy (my knees and ankles had virtually no reflex response), and upon questioning, yes, I had noticed a few hand tremors occasionally in the past. So he promptly diagnosed me with Parkinson's disease, and sent me for all sorts of tests (including a brain MRI), the results of which were mostly inconclusive. I couldn't convince him that my neurological symptoms were due to years of untreated gluten sensitivity, because he had never heard of it.
He prescribed Azilect (rasagiline), which is an irreversible monoamine oxidase inhibitor, and which has a very dangerous side effect risk that he didn't warn me about, namely it interacts with many hundreds of other medications, but specifically it interacts with antihistamines, and the worst interaction apparently is associated with a certain antihistamine that I was using for pollen allergies. The interaction causes serious blood pressure spikes, and I had been taking the drug for about 6 months when I noticed what I was having major BP spikes. Unfortunately, stopping the use of the drug doesn't stop the reaction, because since the monoamine oxidase inhibitor effect is irreversible, the body has to use up the remaining supplies already in circulation, so the effect can last for months after the drug is withdrawn.
Since an intestinal bleeding disorder runs in my father's side of the family anyway, the combination was more than my body could handle, and about a week after I first noticed the BP spikes (I'm talking spikes in the vicinity of 200 mmHg), I woke up with massive colonic bleeding. I actually went to the ER the week before, but of course there was nothing they could do, so I had to let it run its course. Anyway, the net result was that they had to remove my colon in order to keep me from bleeding to death (because I was bleeding faster than they could replace the blood). So my advice to anyone taking an irreversible monoamine inhibitor is to be mighty careful about taking any of the drugs that they interact with (and as I recall, they are known to interact with about 600 drugs).
Oops, I got sidetracked, didn't I.
The good news is that the neurologist gave me samples of Metanx, and after taking it for a year or 2, my peripheral neuropathy symptoms improved significantly, and so did my balance. For a timeline reference, the first TIA-like event happened in July of 2009. In late January of 2010 I first noticed the BP spike issues, and on February 2, I had the emergency surgery that saved my life in exchange for my colon. When I had a second TIA-like event in May of that year, another neurologist checked me out while I was in the hospital, and agreed that since my lower limb reflexes were much improved, my gait and balance were much better, and I could feel a pin prick pretty much anywhere on my feet, I didn't have Parkinson's disease after all.But get this — even though she didn't have the foggiest idea what had caused, or was causing my neurological issues, she refused to admit that they could be due to untreated gluten sensitivity (because she claimed she had never heard of it).
And she was the head of the neurology department at a major teaching hospital. Dr. Mario Hadjivassiliou had published reams of data on the topic at least 8 years prior to this, but she had never heard of it (nor had the student who was with her at the time).Gluten sensitivity as a neurological illness
These days, my left arm is approximately half-numb, virtually all of the time. I probably need to increase my dose of Metanx to address that, but one of the reasons why I lowered my dose was because I have an increasingly-bothersome breathing issue — I can't take a deep breath most of the time, suggesting CNS issues associated with diaphragm control. I need to see if I have a MTHFR gene mutation that's affecting methylation.
Sorry for the long post, but I hope that some of it addresses any questions that you might have in mind.
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.
WoW! You've been through the wringer and back, Tex. I can't imagine that and having been misdiagnosed more than once and having horrendous outcomes to medication. You are a marvel!
Just reading about Metanx, a medical food. I had Googled natural remedies for peripheral neuropathy and it mentioned taiking B-100 B-complex daily (don't take more than 200mg B-6 as it can cause symptoms of neuropathy). Take 100mg alpha-lipoic acid daily. Also said acupuncture is good for PN pain and reflexology is good for leg, feet and toes PN pain.
I've got an appointment with a neurologist next month, I shall go with that information and see if they think it is bunk and want to give me pharmaceuticals or says it is sound.
Thanks again,
Summer
Just reading about Metanx, a medical food. I had Googled natural remedies for peripheral neuropathy and it mentioned taiking B-100 B-complex daily (don't take more than 200mg B-6 as it can cause symptoms of neuropathy). Take 100mg alpha-lipoic acid daily. Also said acupuncture is good for PN pain and reflexology is good for leg, feet and toes PN pain.
I've got an appointment with a neurologist next month, I shall go with that information and see if they think it is bunk and want to give me pharmaceuticals or says it is sound.
Thanks again,
Summer
Summer wrote:Thank you for your tome (and time), Tex. J/K
But it appears that you might be missing the point on the Metanx vitamin combination. Metanx is a balanced combination of the optimum amounts of the active forms of vitamins B-12, B-9, and B-6, and it constitutes an effective treatment for peripheral neuropathy and endothelial dysfunction. It is not just another arbitrary combination of vitamins.
Some people can't properly convert the inactive forms of some of those vitamins into the active forms, meaning that the vitamins that they are taking (or getting in their food) are not providing the benefits that they should. For anyone who has compromised digestion (which is all of us, by virtue of the MC), the active forms of these vitamins are always more beneficial than the inactive forms, and taking large amounts of the inactive forms of B-9 and B-6 can lead to trouble. Also, it can be risky to take the active forms of these 3 vitamins in an incorrect balance — they have to be taken in a reasonably well-balanced combination, in order to avoid problems in the long-term. IOW, Metanx is a unique formulation . . . that's why it's available by prescription only.
Your neurologist will surely be familiar with it, so hopefully she/he will be able to provide some beneficial insight for your particular situation. Good luck at the appointment.
You're very welcome,
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.
-
brookevale
- Adélie Penguin
- Posts: 75
- Joined: Mon Mar 03, 2014 8:15 am
- Location: United States
Tex,
Have you ever been on a fluroquinolone like Cipro, Levaquin, or Avelox? That is what caused my neuropathy. I have the MTHFR mutation and it appears folks with this mutation get hit hardest with the fluoroquinolone toxicity symptoms. There is some good information at: www.myquinstory.info. The resources document section is awesome. The Flox Report is fascinating.
Have you ever been on a fluroquinolone like Cipro, Levaquin, or Avelox? That is what caused my neuropathy. I have the MTHFR mutation and it appears folks with this mutation get hit hardest with the fluoroquinolone toxicity symptoms. There is some good information at: www.myquinstory.info. The resources document section is awesome. The Flox Report is fascinating.
Strongly believe I have a form of MC that began to flare December 27, 2013.
44 year old married mom to three sons ages 26, 17, and 2, a 21 year old stepdaughter, and 18 year old stepson. I also have a beautiful granddaughter who is one.
44 year old married mom to three sons ages 26, 17, and 2, a 21 year old stepdaughter, and 18 year old stepson. I also have a beautiful granddaughter who is one.