Re: Two Years since last Botox shots
Carolyn, What vitamins and minerals do you take? Ann Doyle
Re: Two Years since last Botox shots
What wonderful news and inspiration that I may be on the right track. I started seeing a MD/ND last month and what you said is exactly what he told me about my nutrition. I have lost 9 pounds since I've been eating fewer carbs and only in the middle of the day. I eat high protein for breakfast and after 5pm. I'm eating all the veggies I want(lots of raw ones too), but fruits only in miday with food. I'm trying to avoid tomatoes, peppers, potatoes, red meat and several other foods...my favorites of course, because I have read many times they make fibromyaglia worse. I drink a protein mixture called Spiro-tein in Soy milk at night)It is loaded with vit/min/amino acids. I eat every kind of Soy food I can find, which is something I was already doing as a dairy & meat substitute. (My mom is a diabetic and has Hepatitis C and her MD told her there was nothing she could do the virus was so bad and the treatment like chemo for 6 months to a year would kill her because of her diabetes. We could see her going down fast. She is seeing this same MD/ND and her energy is much better and she looks better. She is on totally different things than what he gave me.)I am scheduled for an appt. with a pharmacists who has a Phd. in nutrition and specializes in juicing and another appointment for colonics to detox my body. I've been seeing a holistic Chiropractor since July. He did 4 adjustments in July and now I'll go 2 times a month and then later 1 time a month. Didn't mean to get so long winded, but you can't imagine how great it was to read your post. What works for one doesn't work for everyone.....but I feel like I'm doing the right thing for me and your message was what I needed to hear. I'm a holistic RN and I took the Botox a year with no positive results, had surgery with disappointing results and continue the Botox with some minimal results now. The spasms are going into my neck. The last Botox(70 around eyes and 30 in my neck) blurred my vision and wore off in 4 to 6 weeks. So I just decided to listen to my inner voice(also my sister and niece who were begging me and my Mom to see this MD/ND). Will keep everyone posted. It is not an overnight thing, but a process I think.
Re: Two Years since last Botox shots
Delaine, I enjoyed reading your suggestions too.
Re: Two Years since last Botox shots
Delaine, I did the colonics for a while, and felt great each time. But a word of caution. Colonics wash out the intestines up high, and you need to keep them spaced a while apart so you don't wash away all the good things along with the bad. I think the gal gave me acidophilus and some other mixture after each colonic. Just use good common sense. A dr. relative said the colonics were very dangerous for me as a diabetic..but they sure did make me feel great for a while after I had each one.
Evelyn
Re: Two Years since last Botox shots
Thanks for your input. I am going for just one session and then will do occasional detox and replenishing of flora on my own using a variety of things she recommends. She said nothing should be frequent and types of normal flora like acidophyllis should be alternated to prevent the body from becoming immune to them. Chlorophyll and coffee are recommended occasionally to detox the body, but she said coffee should be very infrequent.
Re: Two Years since last Botox shots
Sounds like you have a good handle on it. My brother's wife went to Mexico with her Dad who was very bad with diabetes, etc. They taught them to use coffee enamas for cleansing. She gave me a couple, and I said "That's enough." She is still taking them every day after several years. She is very dependent upon them. I wouldn't use something like that to such an extreme...couldn't be good for you.
Evelyn
--modified by Evelyn at Wed, Aug 08, 2001, 10:47:16
Re: Two Years since last Botox shots/colonics/coffee
Coffee enemas can be toxic if over used. The lady I've talked to that I will see at the end of the month says 2 times a week for 2 weeks at the most then stop. She says any kind of enema should be followed with replenishing normal flora(normal bacteria in the intestines) and the brands and types alternated to prevent building up immunity. Enemas on a regular basis are not good. Detox for chronic illnesses should be closely supervised and monitored by someone who knows what they are doing.
Re: Two Years since last Botox shots/delaine?
delaine, i have a craving for tomatoes. is fibromyalgia something like arthritis?
--modified by kathy at Thu, Aug 09, 2001, 15:18:04
Re: Two Years since last Botox shots/delaine?
No FMS is not arthritis which affects the joints. It affects the muscles and is a strange syndrome of no known cause and no known cure which affects more women than men....more men seem to be getting it or being diagnosed more often. Sounds familar, and as weird as BEB. FMS used to be called fibrocytis...inflammation of muscles, but was mostly ignored and people were told it was psychosomatic or just stress or lack of exercise. Finally in 1990 it was officially recognized as "real" and put under the studies and docs who treated arthritis. There are support groups all over the country and BB's much like BEB/Dystonias. Now it is believed to be a brain disorder which affects the muscles of the body. There are theories that the muscles which are suppose to be repaired from the damage of the days activities when you go into a deep level of sleep doesn't happen for some reason with FMS. Studies have shown that level of sleep is disrupted by waking up frequently during the night or never going into that deep stage where the hormones and chemicals are made to do the repairs. So we stay sore, our muscles are tight, feel over worked and never rested. I feel like I have sprained muscles or a catch in my muscles. It moves around, but most people have one area that is the worst, frequently it is the neck and shoulders. It is exhausting to do anything that you have to hold the arms out or up for any period of time....changing light bulbs, driving without the arms propped up, etc. I think the FMS and the BEB are related and when the cure is found for one we will know the answer to both. Stress and fatigue make both worse and can be the straw that breaks the camels back. Often it follows a traumatic physical or emotional event. Not enough exercise makes it worse and too much exercise makes it worse. Certain foods seem to make it worse...shade plants and potatoes...white or sweet, sugar, beef and pork. Like BEB the symptoms are up and down and often for no known reason and what helps one person may not help another. Many people are very disabled by it. Mine became a problem on a daily basis in 1992, but with light execise and taking really good care of myself I could do my job of teaching in Cardiac Rehab. I couldn't do bedside nursing and I had to stop doing massage. When the BEB hit me hard in Jan. 99, I knew I was in big trouble and by May I couldn't do my job. Looking back I know I had symptoms of FMS off and on since 1969 and BEB during 1998 and I had been sensitive to perfumes, dyes, gasoline, cleaning solutions and sunlight most of my life and it just got worse as I got older. That is far more info than you wanted. Sorry.
Re: Two Years since last Botox shots/delaine?
on the contrary, thank you very much. i just tried to get back into my exercises, carried some heavy groceries. etc. and i either pulled a muscle in my lower back or pinched a nerve and am very sore. i am celebrexed to the max, using a heating pad, using flexall, and am moving very slowly. it's slowly getting better. also the weather here is extremely humid which i know aggravates arthritis . does it also do that to Fms? i love all the foods that you just said made it worse, except i don't usually eat alot of sugar. i am very grateful for this info. i don't know if i just overdid the exercise thing or what.
--modified by kathy at Fri, Aug 10, 2001, 10:21:19
Re:sugar is sugar is sugar/good fat/cholesterol
I avoid white sugar and use honey, but it is still sugar, as are fruits, carrots, carbs, starches, grains, bread, flour, they all turn to sugar in the body. If a diabetic gets a low blood sugar they eat candy or orange juice to bring it up quickly. Fruits and juices and sugar producing foods are ok if taken with other foods like protein and veggies that are not sweet and in small amounts. Frequent small feedings are best and not just one type of food at a time. Soy products have a lot of protein and good cholesterol. Good cholesterols are the wagons that carry out the bad cholesterol from your body. Other good cholesterol or good fats are Olive oil, Flaxseed, avacado, nuts and fish oils. The Stress Response produces bad cholesterol from the liver. Having some time in your day to elicit the Relaxation Response(quiet time, soft music, relaxation breathing, prayer, meditation, watching things in nature, imagining watching things in nature...like water, birds, beautiful outdoor scenes) is an antidote for the damaging effects of chronic stress. Sometimes it is not just what we are eating, but what is eating you. Some form of exercise is also a piece of the puzzle that has to there with a positive attitude with healthy nutrition.
Re: Re:sugar is sugar is sugar/good fat/cholesterol
thanks delaine. i know avocados ,nuts and olive oil are good fat and try to eat them frequently. i just got some ultraslimfast with soy protein and lactose free, as i am sure that the peanut butter toast every day for breakfast is a little much. i think i have some soy allergies tho, so have to go slowly. my back is finally much better. arthrits runs in my family but i'd like to know more about this fibromyalgia. do you now a support group website for it?
Re: Re:sugar is sugar is sugar/good fat/cholesterol
I'm curious about advocado being `good fat'? A nutrionalist told my husband that the fruit had 30 grams of fat and was not to be eaten with cholesterol problems.June in Toronto
Re: Re:fats can be good fat/cholesterol
That use to be the thinking. If you just look at the fat grams and are just counting fat grams. Research is showing that there is more to the puzzle than counting fat grams. Plant fats aren't like saturated animal fats and dairy fats. Our body needs fat to do a lot of essential functions, but plant fats are healthier and actually help rid the body of the bad fats. Fiber should be eaten with any fat to get it out of the body and plants have more fiber than animal protein/fat.So the Key is moderation with any food, eating foods together, eating healthier fats, exercise and stress management/relaxation time. If that doesn't lower it then medication. I'd try the niacin first with Vit. E. and then go to the more costly cholesterol lowering meds which can have costly side effects as well. Drug companies really smooze with free samples as well as wine and dine the docs to use their drugs, so you will have to find a very open minded doc to try the niacin and you may have to tell them about the vit E with each dose...not every one even knows that. Disease not health is the driving force behind most drug companies. If we found a cure for arthritis, heart disease and cancer the drug companies would lose their bread and butter. Even though genetics play a hugh role...an over all healthier lifestyle of improved nurtrition, exercise and stress management can go a long way in prevention.
--modified by Delaine Inman at Sun, Aug 12, 2001, 23:14:38
Re: Re:sugar is sugar is sugar/good fat/cholesterol
june, avocadoes, olive oil, and nuts are monounsaturated fats as opposed to polyunsaturated fat like margarine. does this mean when i have my avocado half with a little salad dressing in its hollow, it should be accompanied by some whole grain crackers, delaine? that's usually how i eat it.
--modified by kathy at Tue, Aug 14, 2001, 08:03:50
fat/cholesterol with fiber
Yes, any kind of fiber helps rid the body of fat and improves digestion.
Re: Re:sugar is sugar is sugar/good fat/cholesterol
Try Fibromyalgia on any search engine and you will find all kinds of ino,and support groups. Every thing needs to be eaten in moderation, even good fats, but Saturated fat is the worst kind and is usually animal fat or by products. HDL is healthy cholesterol and LDL is lousy cholesterol. Good fats help lower the bad cholesterol as I said before, because it is the wagon that carries out the bad cholesterol from your body. Exercise helps lower cholesterol. There are drugs that lower the cholesterol, but one of the safest and cheapest is Niacin. It has a side effect of causing flushing and hot flashes or in high does rash and itching. If it is taken with Vit. E that will prevent those symptoms.
--modified by Delaine Inman at Sun, Aug 12, 2001, 23:15:44
Re: Re:sugar is sugar is sugar/good fat/cholesterol
gosh does niacin ever do that! is a b vitamin complex just as effective if it contains niacin? i at last check had low cholesterol. i am asking for someone else.
Re: Re:sugar is sugar is sugar/good fat/cholesterol
Most niacin in vit problem is in too low amounts to do more than give you the B vit benefits.
Re: Re:sugar is sugar is sugar/good fat/cholesterol
thanks for answering both questions.
Re: Two Years since last Botox shots/delaine?
Delaine,
Your info on FMS is very interesting to me. I've often wonderedif I might have it, because I get big sore knots in my muscles sometimes. The massage lady thinks it's more apt to be from my diabetes, but my sister and cousin have FMS. So do two of the ladies in our church. Anyway, this is all very informative. I hope things get better for you.
Evelyn, where it's finally hot, hot, hot for Washington.
Re: Two Years since last Botox shots
I have been taking glyconutritional supplements since March and so far have not seen any improvement at all. I had heard of people getting much better by taking these particular products and was very hopeful that this was the answer so I'm trying not to get discouraged. But over $100/month with no noticable benefit can be discouraging. I respond ok to botox but not well enough to drive alot, read more than childrens books and certainly not enough to continue working as a CPA. My kids are only 3 and 6 and at least I can care for them. I have not modified my diet at all. I have considered seeing the person Delaine sees when I go to Nashville over Thanksgiving. I am pretty underweight (5'3" and 95 lbs) but my young children are very active. I enjoy exercise but it makes my spasms in my eyes and jaw so much worse that it just isn't worth the pain. I do yoga a few times a week and listen to relaxation music with my headphones at night. Could you email me and let me know exactly what you take so I can compare? ksaffell@aol.com Thanks.
Re: Two Years since last Botox shots
Kelly I have tried a multitude of the $100/a month miracle supplements and none of them helped so after 3-4 months I stopped. What I'm taking now is a local health food store for $17 for a large can. I don't know about the glyconutrients and hope Carolyn posts more info. MY email is rustyfox@charter.net. Dr. Hunter said my body was getting way too many carbs and not nearly enough protein at night to repair my muscles and for my brains neuro-transmitters to work properly. It mades sense to me. My favorite foods were anything with pasta, rice, and potatoes.
Re: Two Years since last Botox shots
Please tell us what glyconutrient supplement you take? The Spiro-tein I take is only 17.00 for a large can and I take a scoop at night as I mentioned earlier. I know what glycogen is and does, but not sure what glyconutrients are as a supplement.
Re: Two Years ...
Carolyn:Welcome to you! It's nice to hear that someone has found something that is of help to them. I am forwarding a copy of your posting to the BEBRF for their evaluation. They are always looking for answers to the disorder BEB. Judy Blackman
blkmn36@earthlink.net
Re: Two Years ...
Judy, I think this is excellent idea and I'm printing out the letter from Carolyn Cook and some of the replies and taking them to my dr. when I go in for botox injections on Sept. 10. This will be my 3rd set of injections and so far I'm just about normal. I'm not without some side effects but no spasms and I can do just about anything I was able to do before blepharospasm invaded my life. I'm interested in knowing what others do for relief and I'm thinking I may need some of the iformation in the future and my dr. may want me to try some of these things. penny in oklahoma city
Re: Two Years since last Botox shots
Carolyn,
I am really happy about your success with this.
For approximately a year before I developed BEB, I was on a low carbohydrate and low sugar diet. I concentrated and ate more protein and moderate amount of fresh vegetables and smaller amount of fresh fruits as they are high in sugar content. I was taking nutritional supplements to make up for any loss of vitamins or minerals along with Borage oil and fish oils and flax seed oils. I had slowly lost around 15 pounds and was exercising and feeling great. I no longer had any indigestion problems and was sleeping well. The sad thing is that this is when my blepharospasm started. I was actually feeling healthier than I had in years when the first symptoms of BEB started. It is a very individualized thing and I'm not trying to downplay your success with what you have done. It has worked for you and glad that you are sharing your experiences.
Could you be more specific about what you do take in the form of glyconutrients and what herbs you took for "cleansing or purifying" the system? I believe that others have asked you that as well. It would be very helpful to people if you just posted it on the bulletin board for all to see.Did you have a dry eye problem when your BEB started? Possibly some of the supplements or diet changes helped with this condition and was also a help with your lessening of symptoms. Please share on the bb, if you will, more specifics about what you did take and what you are presently taking. Thanks,
Shirley in AR.
Re: Two Years since last Botox shots/ carolyn
i agree with shirley. i would like to see the names of some of these supplements you are taking posted on this board also. boy, this nutritional , supplements and other alternative is getting pretty complex, and at least confusing for me. are the glycol ones the ones that are supposed to boost your digestive system because of an enzyme?
Re: No BB response from Carolyn/Glyconutrients
Caroly emailed me and I looked up the websites she mentioned. I can't speak for her as to why she did not post them except the website is the type that is not encouraged as not to promote certain multimarket or claims of cures which have not been proven by research. It was one I had been told about by someone as soon as I posted in May of 1999. The products are not cheap. "Glyconutrients are not vit/min. They are a certain type of carb needed by the body....and aid cell to cell communication." quote from her email. You can email her if you are more curious, as I was and make up your own mind. Keep in mind what works for one may not work for everyone. In the beginning, I spent a lot of money on supplements and potions that others claimed were magic for them and haven't found the magic yet, so I am very careful about what I do if I can't find credible holistic research or doctors I trust to back it up.
Re: No BB response from Carolyn/Glyconutrients
you're learning so much , pretty soon you'll be a holistic doctor or our advisor on this yet. i too am skeptical altho curious about all of these things. i recently tried someing with one of these things in it and broke out in hives and am trying to determine if it was an allergic reaction. people can also have these reactions to some of these nutrients, can't they?
Re: No BB response from Carolyn/Glyconutrients
I'm a certified holistic RN, have a masters in wellness counseling, and worked under Herbert Bensen's Mind/Body Institue in his Cardiac Rehab program, but like everyone I don't always do what I know to do, because it isn't easy going against the tide or in a different direction than most of the world goes as far as eating. I had kind of let myself get distracted the past year and hadn't been eating as healthy as I knew was good for me. Many people do have food allergies. Any time I've tried any supplement with Blue Green Algae my sinsuses get worse. So what is good for one is not good for all. For some peanuts will kill them, so we do have to be careful and know all the ingredients to what we take in supplements and "magic potions".
Re: No BB response from Carolyn/Glyconutrients
thanks delaine!! no wonder you are so knowledgeble on all these subjects. my back is better , but the tension always seems to settle first in my neck and shoulders so i'll look up some of these things about fms.
Re: Two Years since last Botox shots
Carolyn:
Enjoyed reading your message re not having Botodx for 2 years. Can you tell us more about what herbs you take and what glyconutrients does for you. I would love to learn more about he detoxifying program. I have BEB for 3 years and the botox does not seem to last more than 6 weeks. This can become very frustrating and also discouraging. Any info you can pass on would be helpful. My e-mail address is:esoulia@enter.net. Thanks a million for your help and/or suggestions.
Re: Two Years since last Botox shots
You are so fortunate. Thank you for sharing your info, diet, etc. It's amazing what helps some & not others. One bleph patient said a baked potato regularly helped her. I just take vitamins my GP recommends & try to eat healthy. Joann in hot & dry western Ark.
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