zella
Pearl Clutcher
Posts: 3,884
Jul 7, 2014 19:36:30 GMT
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Post by zella on Dec 24, 2016 20:29:04 GMT
Had a great day today. Both girls plus Cora and I all went Christmas shopping tonight. We were gone for 8 hours or so. Very tiring, but so good to feel NORMAL! I'm now in bed, about to go to sleep. DDs are wrapping presents. And Cora is still awake (and it's 2:40 a.m.). Very bad! I am so happy for you! This just got me out of my Christmas funk long enough to go wrap some presents. Thank you {hugs} And I'm so happy to hear that. I need to do some wrapping. Like most years, it's Christmas Eve and I haven't even started. Sigh!
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Post by birukitty on Dec 24, 2016 21:44:44 GMT
Pridemom did you read my post above? Not only did I have 20 treatments of ECT with extensive memory loss, but I also have MTHFR gene mutation with two markers. My Integrative Medicine doctor tested my blood for the MTHFR. Yes, as I mentioned in my post it is well worth getting blood tested for this. But I would caution you not to self treat your daughter by giving her folinic acid unless her blood has been tested and that's what the doctor has prescribed for her. Not everyone who has MTHFR gene mutation needs that. For myself my problem was I couldn't process B12 from ordinary sources or from even ordinary B12 supplements. I take a supplement called "Homocysteine Supreme" from Designs for Health. It is made a certain way that my body can process it. Because my body wasn't able to process B12 for years and I wasn't aware of it eventually it led to "treatment resistant depression". If it had gone on it would have led to dementia like it did with my grandmother. I am under the care of an Integrative Medicine doctor who discovered this problem and once I started taking the correct form of B12 my depression vanished and has never come back. I wouldn't consider doing this without a doctor's care. Even though he doesn't take insurance and he charges me $150.00 every visit I consider him worth every penny. He could have saved me 10 years worth of depression and my memory loss. Even though they are "supplements" or "vitamins" they can still do damage if taken incorrectly. In fact I remember the first supplement prescribed for me for the MTHFR. I took it while sitting at my desk at home and within 5 minutes slid off my chair and was on the floor. Luckily my adult DS was home so I called him and he rushed downstairs. (I have my scraproom in our finished basement.) He quickly called my doctor's office, handed me the phone and they asked to describe my symptoms. The remedy was something sweet-DS ran upstairs for orange juice. That particular version of the supplement had put me in a hypoglycemic state even though I've never had diabetes. I was the first patient in the office to have that sort of reaction. Within a few minutes I felt perfectly fine. I took the supplement back to the office and my doctor switched it to the current one I've been taking ever since. I just don't want anything bad to happen to your daughter.
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pridemom
Pearl Clutcher
Posts: 2,843
Jul 12, 2014 21:58:10 GMT
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Post by pridemom on Dec 25, 2016 4:04:16 GMT
Pridemom did you read my post above? Not only did I have 20 treatments of ECT with extensive memory loss, but I also have MTHFR gene mutation with two markers. My Integrative Medicine doctor tested my blood for the MTHFR. Yes, as I mentioned in my post it is well worth getting blood tested for this. But I would caution you not to self treat your daughter by giving her folinic acid unless her blood has been tested and that's what the doctor has prescribed for her. Not everyone who has MTHFR gene mutation needs that. For myself my problem was I couldn't process B12 from ordinary sources or from even ordinary B12 supplements. I take a supplement called "Homocysteine Supreme" from Designs for Health. It is made a certain way that my body can process it. Because my body wasn't able to process B12 for years and I wasn't aware of it eventually it led to "treatment resistant depression". If it had gone on it would have led to dementia like it did with my grandmother. I am under the care of an Integrative Medicine doctor who discovered this problem and once I started taking the correct form of B12 my depression vanished and has never come back. I wouldn't consider doing this without a doctor's care. Even though he doesn't take insurance and he charges me $150.00 every visit I consider him worth every penny. He could have saved me 10 years worth of depression and my memory loss. Even though they are "supplements" or "vitamins" they can still do damage if taken incorrectly. In fact I remember the first supplement prescribed for me for the MTHFR. I took it while sitting at my desk at home and within 5 minutes slid off my chair and was on the floor. Luckily my adult DS was home so I called him and he rushed downstairs. (I have my scraproom in our finished basement.) He quickly called my doctor's office, handed me the phone and they asked to describe my symptoms. The remedy was something sweet-DS ran upstairs for orange juice. That particular version of the supplement had put me in a hypoglycemic state even though I've never had diabetes. I was the first patient in the office to have that sort of reaction. Within a few minutes I felt perfectly fine. I took the supplement back to the office and my doctor switched it to the current one I've been taking ever since. I just don't want anything bad to happen to your daughter. Thanks. Our family doctor is not familiar with MTHFR, but I am going to talk to one of my friends that is a PA. Her clinic tests for it and she is up on treatment. I appreciate your concern and will consult further before she starts the supplement.
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Post by Drew on Dec 25, 2016 4:54:00 GMT
I also wanted to mention the VNS. My son has one for his seizures but it can be very effective for people with severe, drug resistant depression.
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mlana
Pearl Clutcher
Posts: 2,525
Jun 27, 2014 19:58:15 GMT
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Post by mlana on Dec 25, 2016 10:23:02 GMT
Pridemom did you read my post above? Not only did I have 20 treatments of ECT with extensive memory loss, but I also have MTHFR gene mutation with two markers. My Integrative Medicine doctor tested my blood for the MTHFR. Yes, as I mentioned in my post it is well worth getting blood tested for this. But I would caution you not to self treat your daughter by giving her folinic acid unless her blood has been tested and that's what the doctor has prescribed for her. Not everyone who has MTHFR gene mutation needs that. For myself my problem was I couldn't process B12 from ordinary sources or from even ordinary B12 supplements. I take a supplement called "Homocysteine Supreme" from Designs for Health. It is made a certain way that my body can process it. ... Even though they are "supplements" or "vitamins" they can still do damage if taken incorrectly. In fact I remember the first supplement prescribed for me for the MTHFR. I took it while sitting at my desk at home and within 5 minutes slid off my chair and was on the floor. Luckily my adult DS was home so I called him and he rushed downstairs. (I have my scraproom in our finished basement.) He quickly called my doctor's office, handed me the phone and they asked to describe my symptoms. The remedy was something sweet-DS ran upstairs for orange juice. That particular version of the supplement had put me in a hypoglycemic state even though I've never had diabetes. I was the first patient in the office to have that sort of reaction. Within a few minutes I felt perfectly fine. I took the supplement back to the office and my doctor switched it to the current one I've been taking ever since. I just don't want anything bad to happen to your daughter. My DH has Thalassemia, diabetes, high blood pressure, and Chronic Kidney disease. His homocysteine levels were out of whack for some time and may have contributed to his stroke. On the advice of his hematologist, DH takes over the counter supplements of folic acid, B12, and NAC. His nephrologist suggested he take amother B12 supplement called Nephrovite. It is made for CKD patients. DH stopped the original B12 supplement and took the new one that night. I heard a bump about 6 am the next morning. DH was on the floor in the bathroom; his blood sugar had dropped so low he was hypoglycemic. He's been diabetic for 16 and had never even come closer to having something like this happen. I got him some sugar water (no juice in the house) and it brought his sugar up enough he could safely eat some peanut butter. His nephrologist was flabbergasted that changing the supplement could cause such a thing, but that was the only thing that had changed in DH's routine. Of course DH stopped taking it and went back to the old supplement. We had planned to discuss it with his hematologist on the next visit, anyway, but I'll be very sure to discuss both the vitamin and the test with her. The clinical pharmist that oversees DH's meds has said on more than one occasion that he doesnt seem to be absorbing the B12 like he should. I think everyone had written it off as being a side effect of the Thaliassemia, but we may need to look deeper. Thank you so much for sharing this. Marcy
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Post by birukitty on Dec 25, 2016 21:11:02 GMT
Pridemom did you read my post above? Not only did I have 20 treatments of ECT with extensive memory loss, but I also have MTHFR gene mutation with two markers. My Integrative Medicine doctor tested my blood for the MTHFR. Yes, as I mentioned in my post it is well worth getting blood tested for this. But I would caution you not to self treat your daughter by giving her folinic acid unless her blood has been tested and that's what the doctor has prescribed for her. Not everyone who has MTHFR gene mutation needs that. For myself my problem was I couldn't process B12 from ordinary sources or from even ordinary B12 supplements. I take a supplement called "Homocysteine Supreme" from Designs for Health. It is made a certain way that my body can process it. ... Even though they are "supplements" or "vitamins" they can still do damage if taken incorrectly. In fact I remember the first supplement prescribed for me for the MTHFR. I took it while sitting at my desk at home and within 5 minutes slid off my chair and was on the floor. Luckily my adult DS was home so I called him and he rushed downstairs. (I have my scraproom in our finished basement.) He quickly called my doctor's office, handed me the phone and they asked to describe my symptoms. The remedy was something sweet-DS ran upstairs for orange juice. That particular version of the supplement had put me in a hypoglycemic state even though I've never had diabetes. I was the first patient in the office to have that sort of reaction. Within a few minutes I felt perfectly fine. I took the supplement back to the office and my doctor switched it to the current one I've been taking ever since. I just don't want anything bad to happen to your daughter. My DH has Thalassemia, diabetes, high blood pressure, and Chronic Kidney disease. His homocysteine levels were out of whack for some time and may have contributed to his stroke. On the advice of his hematologist, DH takes over the counter supplements of folic acid, B12, and NAC. His nephrologist suggested he take amother B12 supplement called Nephrovite. It is made for CKD patients. DH stopped the original B12 supplement and took the new one that night. I heard a bump about 6 am the next morning. DH was on the floor in the bathroom; his blood sugar had dropped so low he was hypoglycemic. He's been diabetic for 16 and had never even come closer to having something like this happen. I got him some sugar water (no juice in the house) and it brought his sugar up enough he could safely eat some peanut butter. His nephrologist was flabbergasted that changing the supplement could cause such a thing, but that was the only thing that had changed in DH's routine. Of course DH stopped taking it and went back to the old supplement. We had planned to discuss it with his hematologist on the next visit, anyway, but I'll be very sure to discuss both the vitamin and the test with her. The clinical pharmist that oversees DH's meds has said on more than one occasion that he doesnt seem to be absorbing the B12 like he should. I think everyone had written it off as being a side effect of the Thaliassemia, but we may need to look deeper. Thank you so much for sharing this. Marcy Marcy, you are very welcome. I share my medical experiences so that I can possibly help others. Be prepared though-many traditional doctors don't know about or can't test for MTHFR. That's why it took me so long to get diagnosed. But it is more prevalent than you would think in our society. And if you have it like I did (which must have been very bad-enough to have caused treatment resistant depression for 10 years), your blood work for regular B12 can still look normal. That's what's so frustrating. But a simple blood test for the MTHFR gene can detect it. If you can find one in your area I would suggest looking for an Integrative Medicine Doctor. Mine is a board certified in internal medicine. His card says the offer the best of conventional treatments with natural approaches and alternative strategies. Now that doesn't mean anything really far fetched. Far from it. You know how you go to a traditional doctor for a problem? He/She looks at the one problem and usually prescribes a drug to treat that one problem. The way my Integrative Medicine doctor works is that he sees the body as a whole, and he works equally with you as the patient. First you meet with him in his office for about 45 minutes. He goes over your whole history and any complaints you may have. Then he does complete (really complete) blood work on you. Then you meet again to go over the blood work and both of you work out a plan to best treat you based on the blood work, and what problems you are having. This involves traditional prescriptions and vitamins and supplements. My doctor locally is so much in demand (people come from 60 miles away to see him) that he doesn't need to take insurance so he doesn't. I pay him at cost out of my own pocket because he is worth it. He also communicates with me by email which is very handy. No other doctor does that. I hope you can find a doctor who can test your husband. Don't give up until you do. Remember, "the squeaky wheel gets the grease". Just keep on searching. There will be one out there. Please PM me if you need more advice.
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Post by birukitty on Dec 25, 2016 21:15:19 GMT
Pridesmom and Marcy-Just remembered-there is some information on MTHFR on this website www.stopthethyroidmadness.com My sister who has it actually told me to go get tested for it, but I read about it on this website once I was diagnosed. I also have hypothyroid which this website deals with, but they do a great job explaining MTHFR.
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zella
Pearl Clutcher
Posts: 3,884
Jul 7, 2014 19:36:30 GMT
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Post by zella on Dec 26, 2016 0:49:12 GMT
Thank you for all that info. I will be reading up on it. My daughter recently had genetic testing done, and it ruled out the MTHFR, but I haven't had it ruled out.
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zella
Pearl Clutcher
Posts: 3,884
Jul 7, 2014 19:36:30 GMT
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Post by zella on Dec 26, 2016 1:01:29 GMT
birukitty, it's entirely possible I asked this question before. I did do a search on the board and couldn't find anything, though. Thank you for sharing your story. I keep meaning to get tested for the MTHFR gene but forget. I will write it in my planner. @megmc: I have the therapy lights but I am terrible about using them. I don't know why. I literally don't think about them. My mind is like a sieve. If it isn't written down, I won't remember it.
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Post by birukitty on Dec 28, 2016 1:50:25 GMT
No worries Zella. Whoever asked the question before, I'm more than happy to answer it again. If I can help anyone now and in the future I will repeat my experience as long as it takes.
I do wish for you to feel better as soon as possible. I know what you are going through. And how difficult it can be to remember those things that can/might make you feel better, but to simply forget them the very next minute because simply existing is so difficult.
If you need someone to chat too, someone to remind you-please feel free to PM me at any time. (And whoever else is struggling with this vicious disease we call depression). I've been there. I know what you are going through. Sending big HUGS your way!
BY the way if you are talking about the blue light that helps seasonal disorder I have one of those too. It's all about keeping a routine. For me my day starts with making coffee, then bringing it down to my desk where my desktop computer is. I get online and spend about 2 hours here. This is where my blue light is and since it's right there next to my computer I turn it on. You are supposed to use it first thing in the morning. I use mine through the winter because I hate winters. Mine is on a timer and goes for 45 minutes then turns itself off. I've had it for years. My Integrative doctor suggested it.
Take care and write if you want someone to talk to who's been there.
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Post by SockMonkey on Dec 31, 2016 20:26:38 GMT
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Post by teddyw on Dec 31, 2016 21:02:33 GMT
My older dd's therapist suggested that my younger dad be tested for low b12 & folic acid as a cause of her depression/anxiety. Her pediatrician was happy to oblige us as he would like her to be off antidepressants too. Both were normal. B12 was high. It's an easy fix if that's someone's issue.
Also saw that genetic test can also be linked to migraines & autism. Makes you wonder why it isn't more mainstream.
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Deleted
Posts: 0
Aug 18, 2025 21:44:49 GMT
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Post by Deleted on Dec 31, 2016 21:12:31 GMT
I'm so grateful for everyone who has shared their experiences. I've struggled with anxiety most of my life and depression for years; this year has been the worst. I'm grateful to have some options I didn't know about that I can now look into. Thank you all. I second this. I've suffered from depression my entire life but this year has been the worst and my meds don't feel like they're working. I've been afraid to call my doctor thinking there was no help left for me. I feel better knowing there are other treatment options out there.
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pridemom
Pearl Clutcher
Posts: 2,843
Jul 12, 2014 21:58:10 GMT
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Post by pridemom on Dec 31, 2016 22:30:36 GMT
Pridemom did you read my post above? Not only did I have 20 treatments of ECT with extensive memory loss, but I also have MTHFR gene mutation with two markers. My Integrative Medicine doctor tested my blood for the MTHFR. Yes, as I mentioned in my post it is well worth getting blood tested for this. But I would caution you not to self treat your daughter by giving her folinic acid unless her blood has been tested and that's what the doctor has prescribed for her. Not everyone who has MTHFR gene mutation needs that. For myself my problem was I couldn't process B12 from ordinary sources or from even ordinary B12 supplements. I take a supplement called "Homocysteine Supreme" from Designs for Health. It is made a certain way that my body can process it. Because my body wasn't able to process B12 for years and I wasn't aware of it eventually it led to "treatment resistant depression". If it had gone on it would have led to dementia like it did with my grandmother. I am under the care of an Integrative Medicine doctor who discovered this problem and once I started taking the correct form of B12 my depression vanished and has never come back. I wouldn't consider doing this without a doctor's care. Even though he doesn't take insurance and he charges me $150.00 every visit I consider him worth every penny. He could have saved me 10 years worth of depression and my memory loss. Even though they are "supplements" or "vitamins" they can still do damage if taken incorrectly. In fact I remember the first supplement prescribed for me for the MTHFR. I took it while sitting at my desk at home and within 5 minutes slid off my chair and was on the floor. Luckily my adult DS was home so I called him and he rushed downstairs. (I have my scraproom in our finished basement.) He quickly called my doctor's office, handed me the phone and they asked to describe my symptoms. The remedy was something sweet-DS ran upstairs for orange juice. That particular version of the supplement had put me in a hypoglycemic state even though I've never had diabetes. I was the first patient in the office to have that sort of reaction. Within a few minutes I felt perfectly fine. I took the supplement back to the office and my doctor switched it to the current one I've been taking ever since. I just don't want anything bad to happen to your daughter. DH talked to our family doctor at DD's appointment yesterday. Our youngest's TSH still is not under control. He said to go ahead and start the coenzyme folinic acid. He said it won't hurt her to try it. My PA friend said the same. Middle DD already takes a RX version with her medication that impedes folate metabolization.
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Post by Belia on Jan 1, 2017 3:54:47 GMT
I've been reading a lot of interviews with Carrie Fisher since she passed away and she had great experiences with ECT.
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Post by birukitty on Jan 1, 2017 22:42:57 GMT
From my side of the ECT experience (those patients who have had ECT and have lost a great part of their memories as side effects) I've heard bad things regarding the Kitty Dukakis books. How she led many patients to the procedure by her glowing reports of it. With anything you have to do your research beforehand and that is almost impossible to do when you are so sick (literally so ill that making deductions and thinking clearly are impossible). I'm not blaming Kitty Dukakis. I'm simply saying that not everyone has the same experience. In my mind and heart it is well, not cool being the antiquated word, to write a book such as this giving such a glowing report to a procedure that is fraught with extremely irreversible side effects for most people. I would say from my research 75% of patients who receive ECT have lasting problems with memory loss, while 25% don't have any side effects. It is an outdated, extremely dangerous procedure in my opinion. As I mentioned the doctors gloss over the possible dangers before the procedure. I was told I may have problems with my short term memories (just a bit) but that they'd all return and that I'd have no problems with my long term memories. This was from a board certified psychiatrist, one of the best in my state and the best mental hospital near Baltimore, Shepard Pratt where I received the procedures as an out patient. That hospital is well known. If I hadn't put my foot down and made them stop at 20 they would have kept going. While it has helped some patients (and I'm very glad for those it has helped) I just don't think it is worth the risk. Our memories are precious. Once they are gone, they are gone. If the genetic mutation of MTHFR is as common as is being written and is as easy to be diagnosed as a simple blood test, I would caution those suffering with long years of depression to start there first. If your traditional doctor has no experience with this seek out an Integrative Medicine doctor even it you do need to pay out of pocket to see him. It's worth it to save your memories. Remember to look for one that is a board certified internist first.
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