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Medical Forum / Diseases and Disorders / Tinnitus / February 2005New to Meniere's and need resources, advice, etc.
Hi, My teenaged daughter was recently dxed with Meniere's Disease, though she's had the symptoms for years. I'm trying to find a support group so she and I can get some tips on coping with the vertigo, dizziness, etc. She also has a lot of problems with being exhausted most of the time, confusion, memory problems, etc. Maybe also with dealing with the dx. (It's a HUGE relief to have ppl believe that the vertigo isn't all psychological, which is what it was written off to for years, but knowing that this is a lifelong problem that will probably involve permanent hearing loss is a sad thing for us. I hope that she'll finally get some accommodations at school, where she's been struggling for years, but I'm not sure about that and I am sure the high school will fight before they do that. I'm not sure if it's worth the time and effort.) We also need to almost completely revise what we eat. She's a lacto vegetarian athlete (who doesn't like tofu except with soy sauce). I also need high protein. But I have ataxia, Tourette's, chronic fatigue, and some other problems so more than minimal cooking is out. Anything that requires much time, energy, or esp consistency or stamina is out for both of us. Any suggestions on groups, resources, cookbooks, living tips, study tips, etc.? Thanks very much for any help. "a_taxi_c@yahoo.com" <a_taxi_c@yahoo.com> wrote in part: >Any suggestions on groups, resources, cookbooks, living >tips, study tips, etc.? See my signature block below. It's a pretty informative group, but operates via email.  SignatureJim Chinnis / Warrenton, Virginia, USA Want to discuss Meniere's? See http://groups.yahoo.com/group/MenieresDG Another resource. http://eebee.net/TinnitusIsaPainintheNeck.shtml Elly's Tinnitus Resources http://eebee.net/ >Hi, > [quoted text clipped - 22 lines] > >Thanks very much for any help. > Hi, > [quoted text clipped - 3 lines] > She also has a lot of problems with being exhausted most of the time, > confusion, memory problems, etc. Maybe also with dealing with the dx. I don't know what kind of evaluation led to your daughter's diagnosis, but I can tell you that I had/have all the above for years, and that the cause turned out to be infectious disease, tick borne diseases in my case. Your daughter's illness sounds like my own, and I do not have Meniere's. > (It's a HUGE relief to have ppl believe that the vertigo isn't all > psychological, which is what it was written off to for years, but [quoted text clipped - 4 lines] > will fight before they do that. I'm not sure if it's worth the time and > effort.) The good news is that she may have a diagnosable and treatable illness, and that what you've listed are only symptoms. In my case, antibiotics gave me tremendous improvement. > We also need to almost completely revise what we eat. She's a lacto > vegetarian athlete (who doesn't like tofu except with soy sauce). I [quoted text clipped - 5 lines] > > Thanks very much for any help. Vegetarians tend toward very high glycemic and hyperinsulinemic eating patterns if not extremely careful about food choices and taking a lot of prep time. Grilled animal proteins, salads and veggies along with nuts make a very healthy and non labor intensive food plan. Susan Hi, Thanks for the replies. Susan, I wasn't sure what you meant in a few places. AFAIK Meniere's *is* a diagnosable and treatable illness. I'm not sure what other medical problems need to be ruled out or how to do that. Are you talking about Lyme's? She had a test for that a few years ago so I know it wasn't the problem in the beginning. (Also, she's been on antibiotics a few times since the sxes began but maybe she wasn't on them long enough to help the Meniere's-type problems.) But she may have acquired Lyme's since she was tested. It's is uncommon where we live but not completely out of the question. If you're talking about something else, can you please be more specific? Any other recommendations for conditions that should be ruled out and what kind of doctor she should see to do that? TIA. I know she needs to watch her protein intake and make sure it's adequate. AFAICS that's the problem with a low salt diet. (Otherwise, it would be fairly easy.) I don't know how to keep her protein levels adequate unless she starts eating a *lot* of tofu, which she hates. I don't know what you mean by "grilled animal proteins". Milk? Eggs? Eggs make her sick, though she seems relatively ok with them in small amounts. Milk and milk products (and eggs too) all seem to be fairly high in sodium. It's hard to keep around 1 gram of sodium/day if you need to get adequate protein from milk. I'm not sure it can be done. Thanks again, everyone. I appreciate the info. > Hi, > [quoted text clipped - 3 lines] > *is* a diagnosable and treatable illness. I'm not sure what other > medical problems need to be ruled out or how to do that. Thyroid and infectious diseases, such as tick borne ones, as in my case. > Are you talking about Lyme's? She had a test for that a few years ago > so I know it wasn't the problem in the beginning. Unfortunately, there are no clinically meaningful nor reliable blood tests for Lyme and the associated diseases. That's why it's a clinical diagnosis. For example, the FDA approved Lyme test kit tests for an antigen expressed by only a fraction of the hundreds of borrelia strains in the U.S. In many cases, folks with clear clinical disease never test positive for Lyme, HGE, HME, babesiosis, bartonella and the other common TBDs. I didn't test positive for HGE and HME til after I'd had 4 mos. of high dose oral antibiotics. There is no way to rule out Lyme and the other diseases with lab tests. In my experienced and well researched lay opinion, a person that ill and suffering should test for all things, and do an empirical trial of antibiotics if nothing is found. That's how my own child was cured of illness (including dizziness, hyperacusis and tinnitus) after 3 1/2 years of illness. It's the course my infectious diseases doc recommends. (Also, she's been on > antibiotics a few times since the sxes began but maybe she wasn't on > them long enough to help the Meniere's-type problems.) But she may have > acquired Lyme's since she was tested. I was on antibiotics often during my early years of acute illness, mostly because I had constant ear, sinus and other URIs. I was never on them long enough, or a high enough dose to get benefits, though. It wasn't until I took doxycycline, 400mg per day (double the normal adult dose) that I got significant changes. In fact, initially, I had a bacterial die off reaction that made my T so loud that it brought me to this newsgroup, along with recurrence and increasing severity of my other symptoms, which later subsided as I continued treatment. Doxy has a very good CNS penetration. I was able to enter rehab after 8 years of debilitating fatigue, etc., 4 months after starting (and staying on) doxy. It's is uncommon where we live > but not completely out of the question. If you're talking about > something else, can you please be more specific? Any other > recommendations for conditions that should be ruled out and what kind > of doctor she should see to do that? TIA. It's not uncommon anywhere. Doctors in certain regions are told it's uncommon, so they don't think of it nor diagnose it. It's not even diagnosed in most cases here in NY where it's highly endemic. Doctors and the public are trained to look for the wrong signs and symptoms (the least frequent manifestations) and to rely on clinically unreliable tests. Unfortunately, it's hard to tell you who to see about this. Most academic docs are blowing it off, and many of the supposed Lyme Literate docs are overdiagnosing it. There's a lot of bad medicine in both camps. The best I can suggest is to find your local support group and get a few doctor recommendations and find the one who trie to help while minimizing aggressive treatment. This requires educating yourself (though be wary of the online "support" groups and their denizens) via good scientific literature. That's how I found and decided upon the most appropriate treatments and clinicians for my child and I. I have a wonderful infectious diseases doc, but most of them are useless for TBDs. Where are you located? > I know she needs to watch her protein intake and make sure it's > adequate. AFAICS that's the problem with a low salt diet. (Otherwise, > it would be fairly easy.) I don't know how to keep her protein levels > adequate unless she starts eating a *lot* of tofu, which she hates. I > don't know what you mean by "grilled animal proteins". Milk? Eggs? I mean fish, chicken, beef, etc. A vegetarian diet, especially one low on soy, is insufficient in terms of protein, and promotes inflammation due to high blood glucose and insulin levels. This causes symptom flares and worsening global health. > > Eggs make her sick, though she seems relatively ok with them in small > amounts. How about high quality protein shakes, made with frozen fruit, some nut oils and yogurt, for example? The only thing a chemotherapy patient I know could get down and keep down. > Milk and milk products (and eggs too) all seem to be fairly high in > sodium. It's hard to keep around 1 gram of sodium/day if you need to > get adequate protein from milk. I'm not sure it can be done. > Thanks again, everyone. I appreciate the info. Is low sodium helping her improve? My dizziness and fatigue never improved on that restriction. Only antibiotics and a lower carb diet have. My energy was vastly improved, and once I went low carb, my remaining T (after antibiotics) became a very soft, ignorable hiss. I no longer have vertigo. YMMV. Susan >>I'm not sure what other >> medical problems need to be ruled out or how to do that. >Thyroid and infectious diseases, such as tick borne ones, as in my >case. we're still checking thyroid. i'm asking for another test when she sees one of her docs this Thursday. he was going to ask for another this fall but i forgot to remind him. she has been checked for that a few times. she was low once and had been on thyroid meds but she has tachycardia and the cardiologist thought the thyroid meds might be contributing so all the docs agreed to try things without them. her first two tests were within the normal limits. the first was at the low end but the second was fairly close to the mean. the MD was going to test again bc he still suspects hashimoto's or something similar. but that's a possible dx, not a probable or presumed one at this point. >I was able to enter rehab after 8 >years of debilitating fatigue, etc., 4 months after starting (and >staying on) doxy. congratulations. i'm glad that the treatment was so successful. I said Lyme's was uncommon here based on the maps I've seen. I was comparing it to high incidence areas like the NE part of the USA. But I knew a woman who got Lymes while she was living in a part of Alaska that may have an even lower incidence of Lymes than this area. (she lived most of her life there so almost certainly got it there.) So I know you can't rule it out just based on where you live. (I was only saying it's much less likely that my daughter has it than if she were living somewhere like you are where the incidence is, realtively, high.) I do'nt theinnk my daughte'rs been tested for any other TBD. I'll ask the doc on thursday, though i'll probably need to tell him exactly what tests to order. any recommendations or links to recommnedations would be greatly appreciated. i'll ask around about groups in this area and doctors. thanks for the suggestion. anything else she should check out besides TBDs? i'd appreciate any tips. >I mean fish, chicken, beef, etc. A vegetarian diet, especially one low >on soy, is insufficient in terms of protein, and promotes inflammation >due to high blood glucose and insulin levels. This causes symptom >flares and worsening global health. > That's not going to happen. You may as well recommend cannibalism as a cure. I've contacted a nutritionist who says she can design low-prep, high-protein meals. Which is good bc we've always kept 100 grams of protein a day before the Meniere's dx. She needs that. She's only been on a low sodium (i.e., about 1.1 gram/day, though we're shooting for 1.0) diet a few days. It's not helping her yet but I think it's only fair to at least give it a week or two. ;) After all, your recommendation takes months. ;) Seriously, does anyone know how long it should take before we see improvement on a low-sodium diet if it's going to work? I don't want to give up too soon but I don't want to be on the diet (bc it is so restrictive, esp for vegetarians) for months and months if it's supposed to work after a few weeks. >How about high quality protein shakes, made with frozen fruit, some nut >oils and yogurt, for example? The only thing a chemotherapy patient I >know could get down and keep down. Any specific recommendations for nut oils? The ones I've seen are very high sodium, at least for someone on a low-sodium diet. Most yogurt is too, though there are a few that are OK (not good, esp in terms of the ratio of protein/sodium). I don't think you'd ever get nearly enough protein on them. She needs something like 1 gram of protein for each 2 mgs of sodium for her protein sources. (I think that's right. She can probably use about 200 or 250 of her sodium mgs on protein and she needs *at least* 100 grams of protein a day.) I don't think the shake described above would come close. I am looking a smoothies made with low-sodium soy milk. That comes much closer but I don't think it's realistic to think that she'll be able to get most of her protein from shakes for the rest of her life. ;) Seems a bit restrictive in terms of diet. Thanks again (to everyone) for any tips or info. > we're still checking thyroid. i'm asking for another test when she sees > one of her docs this Thursday. he was going to ask for another this [quoted text clipped - 6 lines] > test again bc he still suspects hashimoto's or something similar. but > that's a possible dx, not a probable or presumed one at this point. I wonder if her doc is checking her free T3 (active hormone) or just her TSH and/or T4? In my case, my TSH was always normal, my T4 was high end of normal, but I didn't convert it to usable T3, so I was hypothyroid. TSH is a garbage test, so if she's having complete panels, that's best. > congratulations. i'm glad that the treatment was so successful. Thank you. It came after 8 years of severe debilitating fatigue and related symptoms. It's not all gone, and my cognitive problems persist, but I was able to enter physical rehab after my first 4 mos. of high dose oral doxy. > I said Lyme's was uncommon here based on the maps I've seen. I was > comparing it to high incidence areas like the NE part of the USA. But I [quoted text clipped - 8 lines] > exactly what tests to order. any recommendations or links to > recommnedations would be greatly appreciated. I understand your point about TBD distribution. The problem is that TBDs are vastly underreported even in areas like mine, where they're known to be very common. In areas like yours, docs don't diagnose, much less report what they never suspect, so the underreporting is likely to be even worse. > i'll ask around about groups in this area and doctors. thanks for the > suggestion. I hope you can find someone thoughtful and eager to help. A good clinician. > anything else she should check out besides TBDs? i'd appreciate any > tips. I think everyone with such symptoms should have a thorough infectious diseases evaluation at least once. Toxoplasmosis, exposure to stachybotros fungus, thyroid, TBDs, all are capable of causing the same constellation of symptoms. > That's not going to happen. You may as well recommend cannibalism as a > cure. I've contacted a nutritionist who says she can design low-prep, > high-protein meals. Which is good bc we've always kept 100 grams of > protein a day before the Meniere's dx. She needs that. The problem I see is that she needs quality protein, she has some signs of thyroid dysregulation, and soy is a known goitrogen. It's strongly advised against by many experts for anyone with thyroid abnormality, and the processed soy foods may be associated with other health problems (unlike natural whole and/or fermented soy). She's only been > on a low sodium (i.e., about 1.1 gram/day, though we're shooting for > 1.0) diet a few days. It's not helping her yet but I think it's only > fair to at least give it a week or two. ;) I agree it's wise to give it a trial. I hope it helps. I think anything low risk that has potential to help is worth trying. After all, your > recommendation takes months. ;) Which recommendation takes months? Getting diagnosed? Took me years. I don't think I've made a recommendation, other than getting educated about likely causes of her symptoms and pursuing every possible avenue, not relying on doctors to do it for you. That's what worked when my child was horribly ill at age 8. Took us 3 1/2 years to "get lucky." My child has been symptom free for 7 years now. I had to read the whole damned Merck manual and most of Medline to figure out what to pursue, and to help me evaluate whether what docs proposed was actually good for her, but it was worth it. Very stressful years, but worth it. Seriously, does anyone know how long > it should take before we see improvement on a low-sodium diet if it's > going to work? I don't want to give up too soon but I don't want to be > on the diet (bc it is so restrictive, esp for vegetarians) for months > and months if it's supposed to work after a few weeks. I've never known anyone who's improved on it, so I can't help you there. > Any specific recommendations for nut oils? The ones I've seen are very > high sodium, at least for someone on a low-sodium diet. I don't watch for sodium, so I don't know. But very healthy sources of fats are nuts like walnuts and macadamias. Most yogurt is > too, though there are a few that are OK (not good, esp in terms of the > ratio of protein/sodium). I don't think you'd ever get nearly enough > protein on them. When I say yogurt, I mean naturally fermented plain, unflavored yogurt. It's also very easy to make at home. You can't get enough protein from it alone, but it helps to make a frozen fruit and protein powder shake very palatable, which is how I recommended it. She needs something like 1 gram of protein for each 2 > mgs of sodium for her protein sources. (I think that's right. She can > probably use about 200 or 250 of her sodium mgs on protein and she > needs *at least* 100 grams of protein a day.) I don't understand this, but I'm sure there's some rationale for it that I'm unfamiliar with. I don't think the shake > described above would come close. Actually, it's the only thing that helps most bodybuilders come close to protein requirements without overeating. I'm talking about high quality whey peptide protein powder (you decide how much to use per shake). The brand I used was Designer Protein, unflavored. Check it out. It's high quality protein, and much higher than soy, which anyone with a hint of thyroid trouble wants to minimize in most cases. I don't know about the sodium content, though. > I am looking a smoothies made with > low-sodium soy milk. That comes much closer but I don't think it's [quoted text clipped - 3 lines] > > Thanks again (to everyone) for any tips or info. It does sound as if her diet is awfully restrictive, but perhaps that will improve over time? As for smoothies, the healthiest ones are those you make on your own, using a pure, highly bioavailable protein powder. Best of luck. Susan > high.) I do'nt theinnk my daughte'rs been tested for any other TBD. > I'll ask the doc on thursday, though i'll probably need to tell him > exactly what tests to order. any recommendations or links to > recommnedations would be greatly appreciated. I'm sorry, but I completely ignored this in my last reply. I guess at first, I'd use my commercial lab through my health insurance, before resorting to any of the specialty labs for tick borne diseases, some of which are using non-standard and unvalidated tests. One lab lab that my inf. diseases doc thinks highly of is MDL, or Medical Diagnostics Labs, in NJ. You can get a mailer to send blood overnight if need be. But first, I'd ask for a Lyme western blot, both IgG and IgM, but the doctor MUST write on the lab slip to report *ALL BANDS*, not just CDC specific ones. Some are very specific for exposure to B.b. I'd also ask for HGE and HME antibody testing. That's the simplest stuff to do first, in terms of TBDs. Elevated white blood count can indicate infection, too. Susan these are also symptoms of hypothyroidism. I have that and recently got ringing in my ears. Check out this page : http://thyroid.about.com/cs/basics_starthere/a/symptoms.htm An Endocrinologist is best to diagnose this than you family doctor. Hope this helps. At least there's a cure. Athena vertigo, dizziness, etc. > She also has a lot of problems with being exhausted most of the time, > confusion, memory problems, etc. |
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