I was diagnosed with MS in June 2000. I was out of work for three months when I was first diagnose because of the double vision and gait problems - just to name a few. I take Avenox. However, with my faith in God, I sought alternative methods as well. I have been doing well every since 2002 because of the use of alternative medicines. My neurolgoist confirms this as well.
However, my continuing problem has been with lower back problems and painful knees. I tried conventional med in the past - like Vioxx, Aleve, etc. Nothing help. I just dealt the with pain, the pain got better after I followed the book Toxic Relief as well as my other symptoms. To make a long story short. I have dealt with the pain for over 5 years now, and I have found releif with Zyflamend by New Chapter. It a Cox-2 inhibition supplement. My naturopathic doctor told me about it, and I have been spreading the new every since. She said that she first heard about it at a conference. A woman was raving abouit it. The lady testified that she had been in a wheel chair and she couldn't walk, but after taking it she no longer needed the wheel chair. She said she wasn't sure if she had MS or not could have been arthritis, but all I can say its it worked for me.
We know that with MS we suffer with inflammation. I rather take this natural herb than pain medicine. You can look it up on the internet. It also has other good benefits like reducing cancer cells in the prostate because of it's antioxidant properties. I know all of our bodies are different, but I just want to pass this on in hopes it can help someone else.
I've read most of your postings and I'm curious about the toxic cleansing. Are you still doing that? I'm wanting to do whatever I can to BEAT MS. I am not in a lot of pain at this time just dizzy, uneasy on my feet (especially when I'm tired) and a few of the other aggrivating symptoms, tingling in legs and arms, cold spots then hot flashes and sweating, twitching in left leg, etc. etc........ I was just going to check out more information about Toxic Relief when I read your post about Zyflamend. Are you still doing the toxic cleansing? I'm interested in both of them if you could give me some more information I would appreciate it. Thanks!
Alle, I would also like to add that I've been taking Sam-e by Nature Made, it is for joint pain and I feel like it has helped me tremendously with my aches and pains. BUT I am always interested in what works for other people.
I was told about zyflamend about two years ago and I just recently ran across it again I think I'm going to go and try it. I'm not sure what your symptoms are however I have difficulty seeing and I have extreme numbness in my hands and arms, sometimes my torso and legs. I am also very clumsy. I wonder if it will help. Wish me luck!
Last edited by hekeen; 01-05-2010 at 06:18 PM.
Reason: put name without thinking
You responded to a post which is 5 years old...just wanted you to know not to expect to hear from this poster...
As for the use of Zyflamend, its been taken off the market more times then I can count- if its back on the market, thats news to me.....please be careful- much like some of the super juices and miracle drinks found everywhere, the herbs in this product and NOT tested, NOT FDA approved and certainly not recommended for MS...in fact, stimulating the immune system (as this is known to do) can throw your body into complete MS relapse....
This isnt a cure, nor is it truly safe...and, if it were recommended by the MS society, it woudnt be on late night tv...
be safe, talk to your doctor before starting something like this....you should really talk to your doctor about all supplements and herbs before starting anything new...especially if you are taking any prescriptions along with it. Herbs can alter the affects of how prescription drugs work on you...
thank you for your concern and I appreciate the information. I am not on any prescription medications. I have been doing this herbal thing about three years, and I am doing much better. However I still have a lot of pain and weakness and heaviness in my legs so my doctor asked me to try zyflamend. I got some a couple of nights ago, and I guess I will see how it works I will try to keep you posted. The biggest issue I have right now is extreme numbness in my arms and hands. It sometimes travels through my torso. This is a challenge due to the fact that I am married and I have four children. And I miss feeling their hugs. Please excuse my errors in typing. I use a typing program, because I cannot feel my keyboard.
I am open to any suggestions that you may have in order to combat my numbness and fatigue and persistent pain and weakness.
Hi Hekeen. My first suggestion is to find a doctor who doesnt prescribe herbs. If you have MS, then its a progressive disease which will only get worse- there are FDA approved drugs which are supposed to help prevent that from happening...Copaxone, Rebif, Avonex and Betaseron...also Tysabri are all approved for MS.
Im sorry you have numbness and pain...There are also drugs which will help with symtomatic control, as well as for the fatigue...
I also use a program to type, I use DragonNaturally Speaking- I think its the greatest. I managed to do my entire MBA with this program! Not sure what you are using, but if you dont love it, check this one out.
Do you have a neurologist? I find it hard to believe a MS specalist or even a Neurologist would prescribe what you are taking...if you dont have one, you should definately be seeing one...what you are describing cannot end up well without medical intervention.
I started down this journey of herbal supplements due to having adverse reactions to many of the medications they use for multiple sclerosis. First I was on Avonex which kept me bedridden for half the week every week. I had a three year old at the time and that was not going to work. Then for my exacerbations they put me on solumedrol which caused me to have a spike in my blood sugar up over 400 a collapsed lung and heart attack at the age of 25. Next I was on copaxone, and you know, that's side effect they talk about or warn about that is very rare. Well, I was one of the lucky ones it caused me to have a reaction similar to an anaphylactic reaction. I don't like to be in the cardiac unit it is not one of my favorite places to be due to the fact that they put a great big huge gigantic needle full of adrenaline on the wall(in my opinion to taunt me) ready to be plunged into my chest.
I have talked to my neurologist, and he thinks that I should file for Social Security benefits. I am not ready to give up! As a matter of fact, I am going through school working on my bachelors degree planning on getting my masters degree and I'm going to take it all the way into my Ph.D.. I am a therapist in Colorado, and I have too much going for me to just throw in the towel.
Since I have been doing this herbally I have been able to hike all over Yellowstone national Park, all over Mesa Verde, and have no time in a wheelchair and very little even on a cane. I'm a true believer that God put everything on this planet that I will ever need to use and I don't think that I need to use man-made products I do not even take Tylenol. So needless to say since I've started taking this approach I'm doing much much more better.
And actually my last neurologist that I went to is the one that suggested that I try zyflamend. I only wish I had tried it sooner.
By the way I to use Dragon naturally speaking, and it is a pain in my side! I have a difficult time getting it to type what I say, but I do have a slight speech impediment. Any suggestions?
My husband is laughing at me hysterically because every time I tried it breathes "Orsini paying" or say anything my Dragon tries to say something totally different. As you have just seen. That is what I mean by a pain in my side!
Hi Heather. My first shot of Copaxone led me to a anaphylactic shock as well. I wound up in an ambulance 1/2 hour after I did the shot and almost died. It was very scary, and after 6 weeks, my doctor switched me to Rebif..that wasnt easy to get used to. I hated it.Like everyone else knows, it got easier to tolerate and when the side effects stopped and I learned that it was working (no new lesions for the past 4 years and not one new symtom), i was glad I started the Interferon.
Im not surprised that the Avonex , which is the same drug as Rebif, left you bed bound for a few days...but let me ask, how long were you on it? The first 5-6 months on any drug will definately give you side effects which I admit, are pretty horrible. As time goes on, the side effects wear off and it gets easier and easier to handle the injections...
As for your theory that God made everything we need on this earth; you are certainly respected for your opinion, but I could never agree. Before modern medicine started, the average age to live was less then 40 years. NOW, due to modern medicine, the average life span is over 80 years of age, and its all due to modern science and the drugs and testing that are available, created by those men which God put on this earth. With that being said, diseases such as MS have been studied for years without any cure; however knowing what stops progression in the brain/ spine, has led us to drugs which can help us. If your beliefs stop you from pursing this line of thought, I honestly do respect you. However, it limits your options.
I started my BS a few months before my dx....I actually had to learn to cope with knowing I had MS, learn to deal with injections, etc while finishing my BS. I also went on to do my MBA. I was 30 years old at the time. I started my PhD just a few months ago - I work 50+ hours a week, have 3 kids and a husband. All Im trying to say is that anything is possible, however I do believe that the Rebif I take, is what keeps me going. It keeps my energy up, it keeps me from having to deal with side effects of MS, and prevents new symtoms from starting. Because I ignored the warning signs for the year prior to my testing, I do have permenent nerve damage in my hands and fingers. I have no use of my left hand at all. I use Dragon Naturally to do all my communicating. And, trust me, with college, there is a ton of it. Suggestions? Keep using it and invest in a good headset. the one which comes with it is weak. Investing in a good one, makes your voice recognition clearer and more precise. The longer you use voice recognition the more it picks up your speech patterns. Also, the fact that you have a impediment shouldnt matter. Once you correct things which it did wrong, it shouldnt continue to make the same mistake. Thats built into the program. SO, once you correct something, it should be ok the next time.
You said you are a counselor. But you also said you are finishing your Bachelors. What type of couselor doesnt need at least a Masters degree? In my state its mandatory. The reason I ask is if you deal with other professionals in your line of work, you should talk to them about this entire subject. Make an appointment with a counselor who deals with chronic illnesses- try to talk thru some of your thoughts on meds and look for outside suggestions. If you had any form of MS other then Relapsing/ Remitting, there wouldnt be drugs available; therefore, others are suffering with MS symtoms and not taking drugs as well. They cope by treating the symtoms....but it doesnt sound like youre willing to do that either. So, you are turning to something which in all actuality, could be making your problem worse..
Now, my final thoughts on your post are; The herbs arent making any difference. Youve been able to hike and get out of a wheelchair because its the natural progression of MS to have good weeks and bad weeks. HERBS are not approved to make a differnce to MS patients. That does not mean that your mindset isnt making a difference. If you truly believe in taking herbs and its helping you to believe that you feel better, then by all means, take the herbs. But if you start having the side effects that most people had from taking Zyflamend, then i suggest you stop. Mind over matter is 99% of this disease when it comes to pain and having good days vs bad days. However, I still think that if you could make up your mind to stay on a drug which is proven to work for MS patients, you would have better success.
You and I come from different sets of belief patterns, however youre obviously an intelligent person. You really have to weigh your options here. You state that a concern is to be able to finish school and take care of your kids; but the only way youll be able to do that without being disabled, is to take care of you! You said that you didnt have time for being bed bound from the drugs, but everyone who takes them knows this is only temporary, and the side effects do go away and stop entirely. You also state that you dont believe in drugs, but you are taking extreme chances taking something which not only isnt FDA approved, but has a history of actually causing problems in patients with auto-immune diseases. Unfortunately there isnt much more I can offer you. You contradict what most of us feel strongly about is our only option. BUT I DO RESPECT that you have different beliefs. That being said, I wish you TONS of positive energy, continued ability to hike and do the things you love, and I pray for you that your disease wont put you into relapse mode anytime soon and youll have the time to accomplish your goals.
Hi Nikki, I guess what it boils down to is that I'm afraid to try any more new drugs. Due to the fact that I have had so many adverse reactions. And I do not have the money to supply them. I have four children and a husband and a promising career. I am doing very well on my herbs, and I'm afraid to deviate from them.
I am an addiction counselor in the state of Colorado. I am working on my bachelors degree and I plan on taking it to the full extent. Just out of curiosity, what do you do for a living and what state do you currently live in?
I've always been curious about the side effects of Refib and to what extent they cause you to lose function. I have a neighbor who takes Rebif and I know that she is doing no better than I, as a matter of fact, she seems to have more bad days than I do. I guess what I'm looking for is a guarantee, and I know that there is no such thing. My husband also has a cousin who uses herbs and she has multiple sclerosis and she does very well. My husband also has an uncle and a stepmother who died from MS, needless to say he is pretty afraid of what might happen.
Nikki, you have to admit that this is all pretty scary, the uncertainty of not knowing what might happen. Not knowing from day to day whether or not you're going to be stuck in a Bed or wheelchair or on a cane. So I guess you can't really blame me for wanting to do things naturally. I'm not going to apologize for having a different belief system than you and I do respect yours as well. However I guess information is power. So the more information I have the more I have to base my opinion off of. I appreciate your help and your concern and please do keep in touch. I enjoy talking with you.
Thank you once again for your concern,
hi Heather. Please dont get me wrong! I totally respect that you choose to do herbs; however with what I do know about MS, and what I have learned about the disease modifying drugs- I am a huge proponent of not ending up with disability issues, and the only way to know that is to take the drugs which have been developed to prevent them.
in the days of your cousin and husband's step mother, before ten years ago- everyone eventually wound up disabled. No one dies from MS. Its impossible. However, complications from MS can cause systems to shut down and weaken, thus eventually disabling the ability to live like we would hope.
You asked about the side effects of Rebif. All Interferons have the same side effects....in the first few months, you can flu like symtoms. You get nauseasa, hot flashes, cold sweats- basically you feel like you have the flu. It starts 2 hours after you do your shot and lasts about 6-8 hours. It only happens on shot days (3 times a week) and doesnt keep you down for long. If you time it right, and take something to help you sleep thru it- you actually only feel lousy for a few hours. This lasts about 4-5 months. For the record, I have now met 3 people who did not experience any side effects with the drug and tolerated it well. Copaxone is not an interferon and works differently- however I, like you, was allergic to it and stopped breathing! I have been on Rebif now for 4+ years and honestly, dont have a single side effect, and havent for over 4 years. I travel with it, take it on airplanes and in cars- its mind over matter to me. Do it and get on with life.
You asked where I live. I live in NJ; halfway between NYC and Philadelphia. I dont like to talk about what I do - because it might violate rules here, but suffice to say, Im working with patients who are facing end of life- and that keeps me grounded. At the end of a long day, when I get home and think about all the people who Ive seen that day who are running out of time, it makes me grounded and grateful to have MS. And, no, Im not a doctor or nurse.
You also said that you have 4 kids. I have 3 and a husband who is currently laid off and unemployable. Rebif has a guaranteed program where for the first year, you never pay more then 50$ per month for the drugs....Avonex, Betaseron and Copaxone have similar programs. I have now paid only 50$ per month for my Rebif for over 4 years.....
You asked if I worry about being stuck in a wheelchair. Ill be honest, about once a year I have a "pity party" for me, worrying about the "what ifs", but then I kick myself and get over it....no, on 99.9 % of the days- I do not worry about it, simply because I am doing EVERYTHING that can be done to prevent it. Im on Rebif. The strongest drug out there, to prevent relapses and new lesions- AND its working. I go for MRIs every 6 months and nothing new delevoped in over 4 years. I get blood work done every 6 months and my blood work is stable....so, no, most of the time, I dont think about worst case scenarios and I inject my drugs and am grateful that they exist!
Ive had MS longer then you, have gotten pretty educated on DMDs and options and this is MY choice....You are certainly entitled to yours. I respect it and hope that you will continue to do as well as you are for a very long time. Besides, if during your next MRI things have changed, it wont be too late, you can always try DMDs and see how you do. For most of us, disease modifying drugs are what keeps us going....for some of us, they go against our beliefs. Each one of our diseases is going to progress in a different way, so that too, is a roll of the dice. Heather, I wish you only the best.
I tried to post to your last response. However for some reason it did not take. I want you to know that I'm a very open minded person in that it takes a lot to offend me. I do respect your opinion, and I realize that you respect mine as well. I am sure that being in your line of work you hate to see people suffer. I think I have a pretty good idea of what it is that you do. It seems that you and I have a lot more in common than just our MS. My husband is unemployed as well. He has been laid off. Unfortunately I do not have health insurance because nobody will cover me. That kind of stinks! Therefore I am unable to get my regular MRI's and blood work. So to be perfectly honest, I have no idea where my MS sits. I was told by my neurologist that 1% of us with multiple sclerosis will die from multiple sclerosis. That is in response to your comment about my husband stepmother. I did most of the time when people have negative attitude toward the disease that is what it will take over. I try to remain optimistic, however, at times that it's very difficult. I like you have my own little pity party's not very often but probably only once or twice a year. You know the times where your legs drags so bad that it like your going to need a forklift to just carry across the room. I try to hold onto my sense of humor to get me through this. I really do quite well, I'm one of the lucky ones. I will continue down this road that I'm on as far as my herbs go due to the fact that I seem to be doing so well. I do however appreciate all the information that you can give me my brain has become a sponge. I enjoy learning things and gathering information. With all the recalls on medications over just the last few years and lawsuits. I hope you can understand why am still leery about trying medication. Things that have suicidal effects and death associated with them are not things that I'm willing to try. I'm not going to volunteer my life. I think that you can respect that. I do enjoy talking to you and I hope you continue to post. I'm not trying to offend You anything I've said and I hope that have not. Have a wonderful day! I hope to talk to you soon!
Heather, no worries, you and I seem to communcate on this subject well. You cant offend me!! And, yes, seems we do have quite a bit in common.
You have to be your own advocate about what is right for you and what isnt. Its your choice, and in this day and age- its all about standing up for yourself.
SO, yes, I respect totally that you dont want to be a guniea pig and "offer your life' to find out if something happens (good or bad) and I also realize that when your situation changes with insurance, if you need to- youll start exploring your other options..
In the meantime, stay healthy- ok?? If you run into problems, youll explore solutions then...have a great day.