Gerson's Therapy

[gunnyl]

Does anybody know of any Wegeners patient who has completed any alternative therapies? I have been reading a lot about Dr. Max Gerson as well as Robert Morse N.D. and am interested if any Wegeners Patients have been successful in getting off meds altogether using a nutrient based plan.

[delorisdoe]

I read a book by wendy shanker called "are you my guru?" she tried everything you could ever imagine. some things helped but in the end she had to give in and go back on the drugs or die. Some of the other things she tried did help but they would not have kept her alive.

[Sangye]

Does anybody know of any Wegeners patient who has completed any alternative therapies? I have been reading a lot about Dr. Max Gerson as well as Robert Morse N.D. and am interested if any Wegeners Patients have been successful in getting off meds altogether using a nutrient based plan.
No, but I know of two people who nearly died trying to treat Wegs using holistic treatments-- me and another member who I'll let tell his/her own story. I didn't know I had Wegs and treated my symptoms holistically for a year before I wound up being admitted into the ICU with massive lung hemorrhage that had started 3 months prior. I was nearly dead. It was the result of a severe case of pig-headedness on my part. My holistic docs had begged me to see an MD for the mystery symptoms, but I was convinced they had nothing to offer.

This doesn't mean you can't use some holistic therapies and treatments as part of your overall care. But any holistic doc who treats a Weggie must understand that it is NOT like most other AI diseases. There is no research at all--not even a case study-- on Wegs being treated holistically.

I am very familiar with Dr Gerson's excellent work and am a huge supporter of it. However, it cannot treat Wegs. The diet and juicing aspects are great--not gonna hurt you. But I would not recommend the detoxification regimes (eg coffee enemas) for Weggies. Ironically I followed the Gerson plan for many years before getting Wegs.

About a year ago I emailed the Gerson Institute to ask about a child I knew with cancer. The doctor who answered happened to be one I knew back in Arizona! She had heard about my diagnosis through fellow holistic docs and told me her own mother had died from Wegener's. I have no idea if she attempted to use the Gerson therapy, though. I doubt it. Dr Gerson and his daughter Charlotte (who has run the clinic in the years since his death) had very strict qualification standards for using the treatment.

[gunnyl]

Sangye, as always; you prove to be a wealth of knowledge!

[Al]

Gunny, I get asked this a lot, by well-meaning friends who a) "hate doctors", or 2) are under the assumption that all you have to do to avoid getting sick is to take care of yourself; i.e. if you do get sick (or injured) it is because to were not taking enough of supplement x, or broccoli, or whatever. This is both too simplistic and often totally wrong and unfair. First, people who eat and live well do get hideous diseases, just like the slovens. Secondly, very few of the really bad diseases respond to simply living better. There is, for example, no known cure for WG, nor is any "cure" conceivable in our lifetimes. (In 1968 I broke my thumb off. The bone was reset, but the orthopedic surgeon pointed out to me that it would likely become arthritic in 25 years or so. "But don't worry." he said, "by that time they'll have a cure for arthritis." Hah!) The best anyone can do, now, is manage the symptoms. Better diets, better nutrition, and better ways of living may help, but they will not do the heavy lifting.

Al

[Sangye]

In this (http://www.wegeners-granulomatosis.com/forum/new-member-introductions/346-my-roommate-i-2.html) thread and this (http://www.wegeners-granulomatosis.com/forum/general-wg-chat/353-natural-homeopathic-remedies.html) one, I discussed some more info about using holistic treatments/therapies/supplements along with the medical treatment for Wegs, as well as how to get a holistic doctor on the same page as you.

Unfortunately I'm my usual long-winded self in those threads-- a tendency I've been trying to curb the past couple years. Jack was and is my main role model. He could say everything in a couple of lines. :smile1:

[Thakator]

Nice posts, Sangye.

[Nancy-S]

One year ago my friends 2-year-old-daughter was dx with stage 4 neuroblastoma. This is a rare horrific cancer. After the first few rounds of chemo/radiation, she sought help from a hollistic Dr. with the intension of putting off the rest of her chemo. Her decision was challenged in court and ultimately was required to proceed with convensional medicine.

What she has found is a good combination of both. They call the natural stuff "complimentary" treatments. Its been recognized by her current docs, mainly because her survival so far has been miraculous. But she must, for the safety of her child, always discuss her alternative treatments with the docs at Sloan Kettering hospital in NYC. and vice versa.

I plan on pursuing hollistc therapy. But I DO NOT have Wegs and am currently not on medication.

[Sangye]

Nancy, I know a lot of kids with neuroblastoma. I'm gonna PM you about it.

[Nancy-S]

Got it. I'm gonna gather some info and I'll message you. Thanks Sangye

[Nancy-S]

Gunny, I get asked this a lot, by well-meaning friends who a) "hate doctors", or 2) are under the assumption that all you have to do to avoid getting sick is to take care of yourself; i.e. if you do get sick (or injured) it is because to were not taking enough of supplement x, or broccoli, or whatever. This is both too simplistic and often totally wrong and unfair. First, people who eat and live well do get hideous diseases, just like the slovens. Secondly, very few of the really bad diseases respond to simply living better. There is, for example, no known cure for WG, nor is any "cure" conceivable in our lifetimes. (In 1968 I broke my thumb off. The bone was reset, but the orthopedic surgeon pointed out to me that it would likely become arthritic in 25 years or so. "But don't worry." he said, "by that time they'll have a cure for arthritis." Hah!) The best anyone can do, now, is manage the symptoms. Better diets, better nutrition, and better ways of living may help, but they will not do the heavy lifting.

Al

I can't even make this stuff up. I got this note today from a friend:


Nancy,hi hon. Do yourself a favor and rent this DVD on NetFlix or from where ever, its called Food Matters..its a documentary. ITs an eye opener. Many things I knew already but there was a lot I did learn. Bottom line though hon is Nutrit...ion is the key. I've been doing lots of research this past week cos Chris and I need to lose weight and I know a healthier lifestyle is key.Not a diet but change what you consume and this has led me to Juicing and discovering just how important nutrients and vitamins are and how almost every single illness can be cured if you know what treats what.I want you well..healthy..and I so know the answer is in eating the right foods to get you exactly what your body needs. Hugs.I can later compose some ideas for you.I always think of you and your health issues. I haven't forgotten you.Just been researching a lot.

[Al]

In this (http://www.wegeners-granulomatosis.com/forum/new-member-introductions/346-my-roommate-i-2.html) thread and this (http://www.wegeners-granulomatosis.com/forum/general-wg-chat/353-natural-homeopathic-remedies.html) one, I discussed some more info about using holistic treatments/therapies/supplements along with the medical treatment for Wegs, as well as how to get a holistic doctor on the same page as you.

Unfortunately I'm my usual long-winded self in those threads-- a tendency I've been trying to curb the past couple years. Jack was and is my main role model. He could say everything in a couple of lines. :smile1:
No need to apologize, Sangye. Only jack was Jack, and, in any case, some things take longer to say. And you say it so well.

Al

[gunnyl]

Sangye,

I know all about being Pig Headed and I've lived most of my life with the "Suck it up" Marine attitude about injuries and sickness. This one I realized was not getting better and I got lucky I was diagnosed when I was. I had lung hemorrhaging and was coughing up blood when I was diagnosed. I am always researching natural cures and was hoping that there was a way to beat this thing without the pills. My wife has Behcet's so as you can imagine, between the two of us we have quite a pharmacy in the house! I was hoping to get rid of my portion! LOL I do Juicing, try to eat mostly organic veggies (hard in this Country) and am trying to "control" my animal protein intake as well as the refined sugars. Now that the holidays are over that should be easier. I'm also needing to lose about 15 pounds so I'll continue on this path for that purpose. If I there was documented proof that anybody else had beat it I was willing to try but with two kids in Middle School and Elementary I can't go too far out on a limb with the risk factors. I am "in remission" according to my Rheumy and as I've stated in another thread am in the transition from CTX to MTX. Took my first pill today!
I really appreciate everybody on this site and the contributions that we are able to make to each other. I found this site when I was still in the ICMU in the Hospital. Gotta love technology! And it's been a huge Blessing for me!

[Sangye]

I'm just glad you're doing better and moving onto gentler drugs. The "suck it up" attitude is helpful at times but can become a real obstacle. I've had to deal with that tendency, too!

[MCC]

I posted a thread about nutrition a couple of weeks ago and Food Matters but only got one reply so I guess no one was particularly interested.

For my part, I will continue on my own path, I'm not interested in accepting 'drugs are the only way' any more. Everyone has to do what they think is best for themselves so I'm following a high raw diet, taking more regular exercise and doing an 'anti stress' programme in the form of Paul McKenna's book. Worth a try :)

[gunnyl]

I've seen Food Matters, I just this weekend watched "Dying to have Known" which is a movie about the Gerson Therapy. After reading the book I can see where some things would be dangerous from a Wegeners Patients perspective especially if you took cytoxan.
I too continue to look for a way to defeat this without all of the drugs. I am always reading about alternative treatments but have so far been unable to find anybody who will address Wegeners Specifically. But I continue. Robert Morse N.D. has a book called "The Detox Miracle Sourcebook" and if for no other reason than to understand your body and how Auto Immune Diseases work I would recommend reading it. His knowledge of the Body and all of it's systems as well as how what we put in our bodies effects those systems is invaluable. May not get you off the drugs completely but as a complimentary treatment could help you to lead a more healthy lifestyle that may allow you to live longer. The problem is that Corporate Farming has far removed most of the nutrition from the food we eat. If you're going to go Raw, make sure you go Organic.

[MCC]

Thanks gunnyl for that tip about the book, I've just ordered it from the library.

Yes I agree about organic, I am going to the local farmers market more.

[Sangye]

For someone who is very healthy I would agree that a diet high in raw foods is best. But when someone is compromised with a serious illness the body typically lacks the energy and ability to handle raw foods. The Gerson diet uses raw juices which are easily assimilated, but much of the remainder of the diet is cooked. This is particularly true of the early stages when the patient is most compromised. Emphasis is placed on soups and stews that are cooked at low temperatures throughout the day in order to break down the food while preserving its nutritional value.

Ayurvedic medicine also recommends the same type of diet for those with compromised health. The digestive "fire" is inadequate when one has a serious illness. Adding raw foods to the system becomes a major stressor that further weakens the person and can even lead to a flare in the disease.

I suggest going slowly and trying to remain objective about how you're feeling. I've watched too many people (who don't even have a major illness) do the raw diet thing too gung-ho and really trash their bodies.

Just my two cents. :smile1:

[me2]

Sangye,
Thanks for your info on the possible effects of a raw food diet. What you say makes sense and fits in with what I already know.
I have been contemplating ramping up raw foods and with your caution I will take care not to over do it. Perhaps I will start with alternating with some good stews, juices and raw foods.
Lately I have been feeling pretty ok and for some weird reason I just gave up on dietary control. I have been eating 'bad' foods that I have not eaten in years. The funny part is I'm not very concerned. I know it is a short phase of some kind and then I can return to my usual 'pretty healthy' diet. Or, more of the raw foods like I want to try.

I saw a good video from the library that fits in with what others are watching in this thread called "Forks Over Knives". Great video with some hard science and clinical experience combined.
Gunnyl I thiink your pursuit of health is great and I am glad to see that you are not overlooking the fact that this disease needs to be looked after.

I have come to look upon my own situation as two seperate but overlapping projects. -Deal with the disease, relentlessly.
- The other is to pursue good health. Ironically the pursuit of health is dangerous with this diisease and can backfire.

I almost killed myself trying to treat it naturally and without drugs. I had two different Naturopathic doctors treating me almost to the door of death. I learned a great deal, but at great personal cost. Its a long story.

I am someone like others here who likes to push the envelope a bit. Currently I am looking into something called
"The Life Vessel". It is supposed to balance the autonomic nervous system using light and sound.
I have not found a lot of info yet but it is something that is intriguing. Might it be dangerous for this illness? Yes , it might.
I'm just looking into it at this point. If I end up trying it I will give an account of my experience here.
I think the nearest treatment facility I can find at this point is in Arizona.

[Dirty Don]

Good for you Me2...assertive aggressive w/this disease is working for me, but at times it is also frustrating...because the reality is the disease does what it wants when in wants...but we can stand up to it...

As for Phx area, I use Mayo Clinic, both sites. Ask for a Dr. Catherine Harman...she's my Rheumy & in charge of the team that keeps me straight and narrow! LOL! Best of luck!

Don

[Al]

I posted a thread about nutrition a couple of weeks ago and Food Matters but only got one reply so I guess no one was particularly interested.

For my part, I will continue on my own path, I'm not interested in accepting 'drugs are the only way' any more. Everyone has to do what they think is best for themselves so I'm following a high raw diet, taking more regular exercise and doing an 'anti stress' programme in the form of Paul McKenna's book. Worth a try :)

MCC: I am sorry that, for some reason, I did not see your thread at the time. If I had, I surely would have left a reply. But, in fact, several other threads commented extensively on this issue, so anything I said there would have been redundant--as will this one, at least in part.

Many of us, myself included, are intensely interested in nutritional matters. And we all know about the double-edged sword of a drug-based therapy. So, of course, we all yearn for a proactive, non-pharmaceutic treatment. But I have to say that none seems to exist for our lovely disease.

I have read Dr. Fuhrman's introduction, and I have seen Food Matters, and have read of the Gerson diet. All of these take a grain (or several grains) of truth and run with it. Still, many points trouble me, insofar as dealing specifically with vasculitis is concerned. There is no question in my mind that eating well (whatever that means, in context) is good for us, and there is no question that our meds are hard on the body. The emphasis on "toxins" is, however, misplaced, and only serves as a catchword here: Anything is a "toxin" at the inappropriate level, and many things that could be called toxins are, in fact, rather useful to the body. The question becomes, then, how much of what a body in a certain condition can tolerate.

It is also true that some auto-immune diseases do incorporate diet into their treatment plans. MS is one of them; RA is, sometimes another. But the fact is that WG is not a disease is highly correlated with diet (or exercise). Those who "live well" get the disease, and its flares, as often as those who do not. Vegetarians and vegans suffer along with the omnivores. (Exercise is a bit problematic. I can find very little research about how it plays out in WG. However, in theory, a little is great, but too much can actually trigger a flare.) You can proceed as you wish; it is your body, after all.

As for stress: Yes, relieving of certain kinds of stress will help minimize the risk of flares; for one thing, it will take some of the pressure of an already compromised immune system. But humans also need some stresses. he question is, how much, and what kind. The books on stress management that I have seen do not make this differentiation.

For me, the bottom line is that, while I will continue my quest for good nutrition and such (I like stews a lot, though most recipes have too much salt for me, so I follow my own tastes), but will not rely on this for dealing with my disease. Yes, I know about those who have said, "I've had five flares, and have recovered from all of them without medication!" But, you see, that would be a terrible solution for me. My first major flare would have killed me outright. The second would have taken only my kidneys, if I got lucky. If I have a third, I would be up for organ replacement, or worse. The bottom line is that I cannot afford to have another major flare. If you can take the risk, you are welcome to your own solution. I cannot.

Al

[delorisdoe]

For me, the bottom line is that, while I will continue my quest for good nutrition and such (I like stews a lot, though most recipes have too much salt for me, so I follow my own tastes), but will not rely on this for dealing with my disease. Yes, I know about those who have said, "I've had five flares, and have recovered from all of them without medication!" But, you see, that would be a terrible solution for me. My first major flare would have killed me outright. The second would have taken only my kidneys, if I got lucky. If I have a third, I would be up for organ replacement, or worse. The bottom line is that I cannot afford to have another major flare. If you can take the risk, you are welcome to your own solution. Al

I would like to add to this since to the best of my knowledge I am the one who said I have had several flares that I recovered from without treatment and I do not want to mislead.

I was diagnosed more than 10 years ago. I spent the better part of two years undiagnosed. By the time I was diagnosed I was VERY ILL. I was put on 100mg of prednisone and 100-200 of cytoxan for more than 2 years. I was very aggressively treated in a way that no doctor would ever treat someone now a days. I do think that perhaps the length of time I was on cytoxan may have contributed to my long remission. My "cure" so to speak almost left me dead. Over the years I have had several mini flares and they are treated with prednisone to see if it gets chased away. This has worked. There has also been the odd time that i seem to be heading towards a big flare and then after waiting 7 days to decided to treat or not I do not need to be treated.

I have never refused treatment. I would never refuse treatment. After having this disease for as long as I have I have a good awarness of when I am getting wegeners sick. I do believe that for the last few years, my body has been gearing up towards a big flare. I picture an army of anca's gathering getting ready for attack.

If I have ever given the impression that I believe that wegeners can ever be treated without meds I appologize.

[Chris G]

My flare in 2008 cleared up - or went away - on it's own as well. I can't explain why. I was not on any anti inflamitory meds or immunosupressing meds. My only explanation is that it may have been early in my disease.

That's not to say it will happen that way for anyone else. Now that I have a diagnosis, I will not allow a flare to get bad before treating it properly. Minor smouldering would be acceptable, if the doc says it's ok.

[Al]

.... Minor smouldering would be acceptable, if the doc says it's ok.

Again, Chris, it depends on your risk assessment. Minor smoldering can turn into a major conflagration quickly. For me, that could be fatal.

Al

[me2]

I expect anyone who uses the word 'conflagration' to be right on top of things.

[Thakator]

Hi Chris,
I'd like to add an "Amen" to Al's point about the smouldering aspect of Wegs. - - for your consideration and for that of others who are perhaps new to this. Sometimes things do just smoulder, but in other cases a smouldering can indeed become a major outbreak and very quickly so. (My testimony is having a clear CT scan of the chest and 36 hours later I'm riding a helicoptor to the ER with the formation of ground glass granulomas and hemorrhaging in the lungs of that very same chest.) Quickly - - and deadly under certain circumstances. That's why we pay so much attention to anything that feels the slightest bit amiss and that's one of the nasty things about this disease - - it can get you real fast if you're not careful. It can get you real fast even if you are careful; that's why we all encourage each other to keep after the docs who seem not to quite get it and why we are so alert to the smoke on today's wind which could signal tomorrow's conflagration. We just want you to be careful 'cause fighting fires is no fun. Ron

[delorisdoe]

Ok, so the answer to the original question is a big loud NO. Stick with the meds.


that is all

[delorisdoe]

Again, Chris, it depends on your risk assessment. Minor smoldering can turn into a major conflagration quickly. For me, that could be fatal.

Al

Correct me if I am wrong but I thought this was true for everyone???

[KathyB]

Ron and all -- I believe it's our responsibility to understand our bodies and symptoms. I'm just learning, but am always thinking and processing what's happening. Even if it's nothing to be alarmed about, I strive to understand and keep written records of how I feel. I may need this info in the future. My hope (expectation) is my doctors will keep listening when we meet and digest my emails because they need to know me well and see another side of WG they may not have seen. While it would be great to not rely on meds, I'm not willing to take the risk. Of course, I'll use other "remedies" to support my treatment (exercise, nutrition, etc). I'm not advocating blind faith in doctors, just common sense with respect to their education, knowledge, and experience!

KB

[freakyschizogirl]

My flare in 2008 cleared up - or went away - on it's own as well. I can't explain why. I was not on any anti inflamitory meds or immunosupressing meds. My only explanation is that it may have been early in my disease.

That's not to say it will happen that way for anyone else. Now that I have a diagnosis, I will not allow a flare to get bad before treating it properly. Minor smouldering would be acceptable, if the doc says it's ok.

Chris i had very similar experiences before being diagnosed - i had periods of extreme tiredness that my doc put down to me being borderline anaemic. I think these were mini flares but they did go away on their own. Well, that is, the extreme fatigue went away but the disease didnt and i was diagnosed 3 years, 2 biopsies and 1 collapsed nose later.

I think most of us here would love to find an alternative therapy instead of the drugs but, at the end of the day, as bad as some of the drugs are, the simple fact is we need them or we die.

[Chris G]

[QUOTE=Al;54044]Again, Chris, it depends on your risk assessment. Minor smoldering can turn into a major conflagration quickly. For me, that could be fatal.

I'd like to add an "Amen" to Al's point about the smouldering aspect of Wegs. - - for your consideration and for that of others who are perhaps new to this. Sometimes things do just smoulder, but in other cases a smouldering can indeed become a major outbreak and very quickly so. (My testimony is having a clear CT scan of the chest and 36 hours later I'm riding a helicoptor to the ER with the formation of ground glass granulomas and hemorrhaging in the lungs of that very same chest.) Quickly - - and deadly under certain circumstances. That's why we pay so much attention to anything that feels the slightest bit amiss and that's one of the nasty things about this disease - - it can get you real fast if you're not careful. It can get you real fast even if you are careful; that's why we all encourage each other to keep after the docs who seem not to quite get it and why we are so alert to the smoke on today's wind which could signal tomorrow's conflagration. We just want you to be careful 'cause fighting fires is no fun. Ron [QUOTE]

Perhaps I was unclear. I was in not way suggesting that anyone should refuse or decline wg meds. I was simply saying that many of us smoulderd for a LONG time pre-diagnosis, and will smoulder again after the meds have supposedly put us into remission. There ARE times when smouldering is ok. But there are certainly times when it is not. I'm not at all new to this, and am very well versed on the necessity for meds. The most important thing is that we must work closely with our docs, be aware of our situations and risk factors, and make informed decisions about our care.

[Thakator]

Hi Chris,
No, you weren't unclear and I didn't take your statements in any negative way; I've read your postings for quite some time now and am well aware that you are well aware of what you are dealing with. I have a tendency to write for those who may be browsing this site , those who are fresh to the world of Wegeners and are seeking information regarding this strange new thing they'd never heard of before. I endeavor to stick to the posting at hand and to stay personal with the poster to whom I may be responding - - but I'm always trying to also say something that may help someone new avoid some of the pitfalls we have learned about along our way. You are right, there are times when a smouldering situation leads to nothing worse; I am right in that sometimes a smouldering situation can all of a sudden turn into something life threatening. Just wanted to make sure the new ones take the smoudering as seriously as do we. Sorry if my comments made you feel misunderstood. Ron

[Chris G]

Hi Chris,
No, you weren't unclear and I didn't take your statements in any negative way; I've read your postings for quite some time now and am well aware that you are well aware of what you are dealing with. I have a tendency to write for those who may be browsing this site , those who are fresh to the world of Wegeners and are seeking information regarding this strange new thing they'd never heard of before. I endeavor to stick to the posting at hand and to stay personal with the poster to whom I may be responding - - but I'm always trying to also say something that may help someone new avoid some of the pitfalls we have learned about along our way. You are right, there are times when a smouldering situation leads to nothing worse; I am right in that sometimes a smouldering situation can all of a sudden turn into something life threatening. Just wanted to make sure the new ones take the smoudering as seriously as do we. Sorry if my comments made you feel misunderstood. Ron

No, no......no worries. I think I was a little unclear or maybe INCOMPLETE with my first post. Here's my real uncensored opinion, you're all free to love it or hate it :tongue1:.........newbies should almost always follow the direction of their doctors (assuming they're well qualified) - ask questions and educate themselves as much as possible.

Those of us who have experienced the ins and outs of OUR personal disease for a good length of time, can and should take a more active role in guiding our treatment - even have some input. I personally have some particularly odd symptoms at times, and I know they are wg related, but if you check the text books, you won't find them listed. So I feel that I have early warnings that I'm familiar with. It takes time to find the patterns and figure out what is wg related and what is not. But when you do, it can be very helpful in identifying flares vs. smouldering.

[Thakator]

"It takes time to find the patterns and figure out what is wg related and what is not. But when you do, it can be very helpful in identifying flares vs. smouldering." exactly right, Chris, exactly

[delorisdoe]

I deleted my original post where I told of my unmedicated flares. I will be more carefull to leave out any experiences I have had with this disease that are not likely to help anyone and again I do apologise if i was misleading. I think I need a proof reader.

[Sangye]

I wish you would have kept it, Leigh. I think it's important to know all the possibilities that can occur with Wegs. As long as people know to get checked out when symptoms appear, it's good to know that a flare can occasionally resolve on its own accord.

[Lightwarrior]

Those of us who have experienced the ins and outs of OUR personal disease for a good length of time, can and should take a more active role in guiding our treatment - even have some input. I personally have some particularly odd symptoms at times, and I know they are wg related, but if you check the text books, you won't find them listed....Chris (female)

Chris and All,
When I was first diagnosed I was so happy to finally know what was wrong with me. One of the smart docs I work with actually cried when he gave me my dx. and he told me that most docs only read about Wegs in a text book in medical school.. He told me that I was going to have to become the expert and guide my care. Fair or not if I wanted to live, that's what I needed to do. I appreciated his honesty. Another smart doc I work with who is my nephrologist got upset with me when I did not look at my labs and it took the hospital two weeks to send to him, he told me...you are lucky you didn't die, don't ever do that again. So yes I think you have to educate yourself (thank god for Jack and Sangye) and stay on top of it.

[Chris G]

I deleted my original post where I told of my unmedicated flares. I will be more carefull to leave out any experiences I have had with this disease that are not likely to help anyone and again I do apologise if i was misleading. I think I need a proof reader.

I agree with Sangye. All of our experiences are different, and all of our experiences are important to share. Don't feel like you have to sensor yourself Leigh.

[delorisdoe]

I explained it better a few posts up from this. The one i deleted simply said "I have had 5 mini flares that were not treated and went away." LOL I guess i just added it back in but in this thread it will not be taken out of context and should not ruffle feathers or lead to others not listening to their doctors and going un medicated-I DID NOT DO THAT !!!!!.

And for the record I probably do need a proof reader. Yall should read the messages I send Jack. LOL. They are me and my free mind spewing out.

thanks guys.

[pberggren1]

Your free mind is just fine Leigh.

[Al]

....And for the record I probably do need a proof reader. Yall should read the messages I send Jack. LOL. They are me and my free mind spewing out.
Nothing wrong with your mind, Leigh (though, I admit that, as a fellow Weggie, I may see minds in a prejudicial way...!). It is true that we could all use an editor from time to time (which is, in fact, why my daughter, who has promised to take care of me when I am older and grayer, has a well-enough-paying gig that she will be able to live up to that promise!). But I, for one, am most grateful that you all are pretty forgiving of my slips. As we have observed many times, accurate and heartfelt communication is difficult with this medium. But I find it touching that we do as well as we do.

Al

[drz]

Jack often reminded us of how his Wegs flared and cost him his kidneys in very short period of time. That is part of why we need to stay vigilant and learn what requires immediate medical care and what is best handled by more watching and monitoring to see where it seems headed. Your history will eventually help you build a good base of reference plus the feedback you can get here from peers.

A neuropsychologist told me after recent evaluation that most of my typos and a bothersome cognitive symptoms like trouble with words are probably related to taking prednisone. He said in many areas I actually scored much better in my recent cognitive functioning than I did before my Wegs treatment of intubation, and heavy med regime which he found rather amazing and very unexpected. It still bothers me and often upsets me that it takes me twice or three times as long to type a post like this than it did a few decades ago. And I still find many errors in my posts even after numerous attempts at proof reading. Darn pred meds!@#$%^&

[Sangye]

Pred can definitely mess with cognitive function, even at low doses. Other contributors we might have: fatigue, lack of sleep, depression (often caused by pred), nutrient imbalances, hormone imbalances (caused by pred), general inflammation, blood sugar imbalances.

There are probably a few more but I can't think of them. LOL

[delorisdoe]

Can you imagine a comercial for prednisone...may cause...lol. The list would be endless.

[Dirty Don]

There are probably a few more but I can't think of them. LOL

Must be the pred!! LOL

[drz]

Pred can definitely mess with cognitive function, even at low doses. Other contributors we might have: fatigue, lack of sleep, depression (often caused by pred), nutrient imbalances, hormone imbalances (caused by pred), general inflammation, blood sugar imbalances.

There are probably a few more but I can't think of them. LOL

I got all of the above so far so probably don't need many more reasons for brain bubbles that seem to happen. Apparently my cognitive function got better I guess in past year and this may be as good as it gets but I still feel like a malfunctioning computer a lot of the time. Do others often feel such frustration too?

[Dirty Don]

I still feel like a malfunctioning computer a lot of the time. Do others often feel such frustration too?

Bad metaphor, but exactly how I have felt over the last few months...kind of like something has been deleted and I keep trying to reinstall it. Terribly frustrating some days...could be age, could be the current drugs, could be disease, could be THE surgery & the drugs there...who knows...just feel like something is gone or not functioning properly...could be stooooooopid too!! LOL...best of luck on that!

[Al]

I got all of the above so far so probably don't need many more reasons for brain bubbles that seem to happen. Apparently my cognitive function got better I guess in past year and this may be as good as it gets but I still feel like a malfunctioning computer a lot of the time. Do others often feel such frustration too?
Yeah, pred is a lousy drug. Too bad we have to take it. When I was on the high-dose stuff, I felt like my mind was racing--I could think brilliant thoughts, but they were gone in a flash. It's sort of like all those Archimedean moments in the shower that swirl out of conscious grasp down the drain. Dreams were different: I had extremely vivid long-form dreams that carried the narrative (such as it was) for long periods, and, in many cases, over as many as four sequential dreams. Many of these were, and are, quite memorable. These days, on much lower doses, the dreams remain vivid, though with more perplexing narrative structures. In waking moments, it feels that I can occasionally come up with something useful, but it does bother me that I can suddenly lose my train of thought, or blank out on a word I had in mind. Also, it now takes me longer for whatever brain power I have left to kick in. Mornings were never my strong suit, but now, it is normal to be low IQ until mid-afternoon--when it is time for my nap....

Al

[gunnyl]

I have had so many memory issues since I've been on the pred. It is my biggest complaint. I have also had terrible leg cramps at night, and finally had to start taking muscle relaxers so I can sleep at night.
Took my last CTX yesterday and went full strength on MTX today.

GL

[drz]

I have had so many memory issues since I've been on the pred. It is my biggest complaint. I have also had terrible leg cramps at night, and finally had to start taking muscle relaxers so I can sleep at night.
Took my last CTX yesterday and went full strength on MTX today.

GL

I have been having increased neuropathy symptoms lately. Woke up from a nap feeling big toe was on fire. Then I got cramps in calves and couldn't walk for a few minutes. Don't know if they are related. I have also had periods of extreme itching where I have scratched legs while sleeping till they bleed. Oh the joys of dealing with GPA and related symptoms.:unsure:

[Al]

I have been having increased neuropathy symptoms lately. Woke up from a nap feeling big toe was on fire. Then I got cramps in calves and couldn't walk for a few minutes. Don't know if they are related. I have also had periods of extreme itching where I have scratched legs while sleeping till they bleed. Oh the joys of dealing with GPA and related symptoms.:unsure:
Oh, yeah--I forgot about the itching and the cramps. (I forget about a lot these days). I think i've commented on the cramps before (can't remember for sure), but the itching...yeah. I would wake up in the morning which spotted sheets. Hate it when that happens.

Al

[drz]

Oh, yeah--I forgot about the itching and the cramps. (I forget about a lot these days). I think i've commented on the cramps before (can't remember for sure), but the itching...yeah. I would wake up in the morning which spotted sheets. Hate it when that happens.

Al

Don't know why or how it helps, but I seem to feel better knowing others have similar issues so I can feel comfortable about blaming some of these things on the @#$%^& darn GPA.

The problems from poor concentration (getting easily distracted and forgetting things) creates problems when I forget things I have scheduled or planned so I try to write lots of notes and post notes to remind myself of things. Putting a daily schedule for everything, medical records etc on an Ipod also helps along with notes on calendars. Some times i can hear the alarms but usually not. So far I have made all my medical appointments.

[Al]

Don't know why or how it helps, but I seem to feel better knowing others have similar issues so I can feel comfortable about blaming some of these things on the @#$%^& darn GPA....Some times i can hear the alarms but usually not. So far I have made all my medical appointments.

Oh, I hear the alarms--my wife sets them for some unholy hour, 8:30 or something--but I don't usually acknowledge the presence of same. I, too, have kept all my appointments, medical and otherwise. though I worry that I will forget a job, which would be bad, considering how much this disease costs. I have several times forgotten to bill a client until the check won't clear before the first of the month--also a problem. But we all have our issues, yes...?

Al

[Sangye]

I have been having increased neuropathy symptoms lately. Woke up from a nap feeling big toe was on fire. Then I got cramps in calves and couldn't walk for a few minutes. Don't know if they are related. I have also had periods of extreme itching where I have scratched legs while sleeping till they bleed. Oh the joys of dealing with GPA and related symptoms.:unsure:
Other than the cramps, those are symptoms of active Wegs for me. I don't have neuropathy, but if it's increasing I would also suspect active Wegs.

When's the last time you saw your Wegs doc, drz?

[RudiK]

I'm suffering from peripheral neuropathy in my feet and my right hand, which started a month before I was diagnosed with WG. I have no feelings on the outside of my feet and only partial feelings in my right hand. My feet itch and burn when I walk, especially in the area where the toes "connect"*to the rest of the feet and around the ankles. They also used to itch and burn when I rested, but that has been greatly reduced after I started taking 200mg/daily of Gabapentin. I also suffer from cramps in my legs, usually when I get up after resting on my recliner.

[Thakator]

Drz,

Sangye's suspision that increasing problems with PN implies active Wegs comports with what my neurologist told me last month while hospitalized for a flare. He flat out stated that my worsening PN was most assuredly attributable to the flare and he wanted me to get on Rituxin right away. I've heard of rheumies and pulmonologists recommending RTX, but never before a neurologist.

You might try potassium for the cramps. Ron

[drz]

Other than the cramps, those are symptoms of active Wegs for me. I don't have neuropathy, but if it's increasing I would also suspect active Wegs.

When's the last time you saw your Wegs doc, drz?

I had those neuropathy symptoms years ago during initial onset from years of untreated diabetes so don't know if it is diabetes or from some else. My lab work is monthly and continues to look very good for my history. No other symptoms suggest a real active Wegs. My doctors said I would most likely see increased nasal bleeding which happened on last flare, or return of knee pain, or blood in urine if a real serious flare. I monitor urine weekly for blood with dipstick test plus monthly labs. I see my treating doctor every three months and Dr. Specks, my Wegs consultant, every three months. He is off work now with broken leg so will see them both in March but try to get it back on schedule so I see them at least a month apart. I also see a number of other doctors routinely for follow up care (endocrinologist, dentist, internist, podiatrist, opthalmologist etc) and am seeing or going to see several specialists (nephrology, urology, dermatology, otolaryngology) mostly to assess damage from Wegs and options for some repair work.
Does anyone else get tired from all the medical appointment we need to do just to monitor our health?

[Al]

....Does anyone else get tired from all the medical appointment we need to do just to monitor our health?

You bet. Not to mention getting tired of the copays, the parking fees, running up to the pharmacy to re-stock my stash, etc. That's not to mention the annoying business with the disease itself....

Al

[KathyB]

Ditto, Al & drz! Add in the time spent driving! I now have a GI specialist and ENT to add to my PCP, rheumy, infectious disease, and nephrologist! Haven't ventured into the opthamologist yet or seen the dentist since dx. Coming soon!

KB

[Al]

Ditto, Al & drz! Add in the time spent driving! I now have a GI specialist and ENT to add to my PCP, rheumy, infectious disease, and nephrologist! Haven't ventured into the opthamologist yet or seen the dentist since dx. Coming soon!

Good idea to see the dentist, Kathy. Pred can be hard on teeth and gums. Anyway, you add a good point about the driving. For many, this means a full day getting to and from a single appointment. Then there are those that have to travel, plus get lodging, put up with lousy movies and junk food--all for a 20 minute consultation. Yuck!

Al

[KathyB]

I am happy to report I can subtract my infectious disease doc from my current list of physicians! Now 3 months after fungal pneumonia was diagnosed, I'm released from the meds! My lung scan showed plenty of scarring, but the improvement from my first scan to now is incredible! Woohoo!! Dentist is later this month!

[Sangye]

Congratulations, Kathy! That's a huge step forward. :thumbsup::hug3:

[Al]

I am happy to report I can subtract my infectious disease doc from my current list of physicians! Now 3 months after fungal pneumonia was diagnosed, I'm released from the meds! My lung scan showed plenty of scarring, but the improvement from my first scan to now is incredible! Woohoo!! Dentist is later this month!
Nifty, Kathy! No more trifling with Dr. Truffle, eh?

Al

[gunnyl]

Good news Kathy!

[MCC]

Anyone read Eat to Live? if so what did you think? I just finished it, the author reckons his health plan can turn autoimmune diseases around like Lupus. There's a bit here about what he has to say about autoimmune diseases: Other Diseases | Allergies, Asthma, Fatigue, Fibromyalgia, irritable bowel syndrome, Myositis, Psoriasis, Autoimmune and Lupus | DrFuhrman.com (http://www.drfuhrman.com/disease/Other.aspx)

[gunnyl]

Another good book is "The Detox Miracle Sourcebook" by Robert Morse N.D. if for no other reason than getting to know your body and how it works. I have been juicing and consuming a lot of organic fruits and vegetables.
I went into remission 4 months after being diagnosed and I am doing good. I never went off of meds so don't take this as anything more than what it is. I am in good health and I have started to regain some of my energy back. I'm ready to start running with my son to get him in shape as well as myself and start doing 5K's again.
I took the CTX and Pred for 5 months and I have transitioned to MTX and hopefully will be able to drop the Pred soon. I also dropped the Metaprolol that they had me on for a few months. I am in control of my care and I only take what I need as far as meds. I have started juicing a lot and I believe that it is a factor in my overall health and I would recommend it to anyone for the purpose of getting your health back. I don't at this point trust that it will enable me to drop the meds and I continue to follow my Doctors instructions. But it has made a difference in my body's ability to deal with this disease and the medications.

GL

[MCC]

Another good book is "The Detox Miracle Sourcebook" by Robert Morse N.D. if for no other reason than getting to know your body and how it works. I have been juicing and consuming a lot of organic fruits and vegetables.
I went into remission 4 months after being diagnosed and I am doing good. I never went off of meds so don't take this as anything more than what it is. I am in good health and I have started to regain some of my energy back. I'm ready to start running with my son to get him in shape as well as myself and start doing 5K's again.
I took the CTX and Pred for 5 months and I have transitioned to MTX and hopefully will be able to drop the Pred soon. I also dropped the Metaprolol that they had me on for a few months. I am in control of my care and I only take what I need as far as meds. I have started juicing a lot and I believe that it is a factor in my overall health and I would recommend it to anyone for the purpose of getting your health back. I don't at this point trust that it will enable me to drop the meds and I continue to follow my Doctors instructions. But it has made a difference in my body's ability to deal with this disease and the medications.

GL

I ordered that book from my local library after you or someone else mentioned it before, still waiting! I was in medicated remission after 3 weeks of starting treatment. Staying well now the medication has stopped seems to be the hard thing.

[Al]

Anyone read Eat to Live? if so what did you think? I just finished it, the author reckons his health plan can turn autoimmune diseases around like Lupus. There's a bit here about what he has to say about autoimmune diseases: Other Diseases | Allergies, Asthma, Fatigue, Fibromyalgia, irritable bowel syndrome, Myositis, Psoriasis, Autoimmune and Lupus | DrFuhrman.com (http://www.drfuhrman.com/disease/Other.aspx) I read it. I think there is much to what Dr. Furhman says, and I think that all doctors could benefit for knowing nore about nutrition. Many, at least in my experience, are woefully unprepared to have a good discussion on the subject. And the fact is that many people eat horribly, though most do not get autoimmune diseases. Nevertheless, I strongly advise against seeing this as an alternative treatment. I would want to see real research on any given dietary recommendation (not just testimonials) before I would think otherwise.

Al

[Sangye]

Most of what Dr Fuhrman says is fine. I don't agree with every single thing, but that's okay. Not having read his book I can't say if he gives credit where credit is due, or if he portrays himself as having invented these recommendations. Chiropractors and naturopaths have been saying these exact same things for over 100 years. :wink1:

I absolutely agree that fibromyalgia can be completely eliminated. (I don't like to say "cured" because it's not a disease. It's an imbalance) Many of the AI diseases can be halted or reversed, especially if caught early on. Wegs cannot, but cleaning up the diet and adding fresh vegetable juice is always a good idea.