New Diet - Wish Me Luck!

[BookNut]

Sorry to have been away so very long. Busy summer. Fun travels in the beginning. Bad health in the middle to end. Just can not get away from prednisone and am now very much in the pre-diabetic category, with my numbers and weight climbing at every lab test. My PCP has a medical degree and a degree in integrated medicine. Before becoming a doctor, she worked for drug companies on research. As a result, although she definitely prescribes standard meds, she is careful and likes to try diet and other natural cures. She has advised me to start a 10 day detox and then gradually add back foods in an effort to id an inflammatory food or food group. I am also hoping to be accepted into a Pulmonary Rehabilitation program. I have to do something. I am in a constant vicious cycle. Get sick (asthma and extreme shortness of breath) --- get on high dose of steroids (60 mg) --- Taper off or down to 10mg --- feel good for 1-2 weeks --- Rinse and repeat.

I plan to start the detox on Monday. I spent a lot of time feeling sorry for myself, concentrating on what I can't eat and feeling down about it. However- after studying the plan and the recipes, I can do this!

I will let you know how it goes. Might be REALLY crabby, because I can't have any coffee or tea - not even decaf. Bummer! After the detox, I then can start adding in other foods, one at a time, to see if there might be a culprit we can identify. Here is a link to the 10 day detox.


Mark Hyman's 10 Day Detox Diet to Burn Fat and Lose Weight Fast! - Dr. Mark Hyman (http://drhyman.com/blog/2014/02/25/mark-hymans-10-day-detox-diet-burn-fat-lose-weight-fast/)

[mishb]

Good luck Jacquie, I hope it gives you some answers so that you can start your road to feeling better.

Looking forward to hearing how you are getting on - Crabbiness and all :flapper:

[BookNut]

Thanks Michelle! Hopefully the crabbiness won't be TOO bad!

[Alysia]

Good luck Jacquie. I hope it will do the trick.
As for respiratory exercises, from my own experience and from Phil's, the best is just simply walking. Not fast. Just as much as you can. But maybe couple of times a day. Even inside the house, back and forth. The gentle way is the best. Honestly, after seeing with my sweetie couple of respiratory exercises I dont trust any intervention "from outside". Only what you can do on your own.
P.s. I must say that your being on high pred makes your posts on fb more funny. I hope your nights are getting better. Hang in there.

[Alysia]

2187

I already posted this one for you on fb...
Just to feel dr. Phil's love here too ♡♡♡♡♡♡♡

[BookNut]

This is so special. It was a blessed day when I found this forum with so many brave and welcoming people. Phil was always there for everyone!

[Pete]

Hi Jacquie!

Hope the new plan goes well. Keep us posted!!

[Debbie C]

Good Luck.. Hope the 10 days fly by for you ! Why do they keep putting you back up on such high doses of pred ? That will make you gain weight and be crappy without detoxing also.

[BookNut]

Thanks Deb. Prednisone seems to be the only thing that gets me out of these funks. If I resist and go too far downhill, I end up in an ambulance and have to put up with even higher doses in the hospital. I used to do ok on a 40 mg taper. Lately, those tapers are not working as well. So this time they put me on 60. My reaction to anything higher than 40 is sleeplessness and a terrible temper. I am normally very easy going - but when on 60 or above...watch out. Last time I was in the hospital, my meds got mixed up. I screamed at the morning nurse, that if she didn't get it straightened out NOW, i was going to call a taxi and go home where at least I could use my nebulizer when I needed it. Another time, a social worker came in to interview me about something. She was a meek little thing. I think I scared the %^&* out of her. She introduced herself, and I said - "Great! You are probably the 67th person with yet another theory on what is wrong with me!" She hightailed it out of there immediately.

We just cannot solve the problem. My allergist and GP are great. My ENT and pulmonologist not so much. The latter just does not get it - or want to get it. The last time I showed up in his office, my breathing was so bad, my husband had to get me there via wheel chair. At the end of the appt, he said, "Well - I don't think I need to see you so often. Once a years should be enough". This after I had been on a pred taper at least every 6 -8 weeks for the past year.

My CTs and X-rays do not look terrible. What my plumy refers to as "mild" bronciectasis. There are some treatments specific to that which have been helpful. I found them by myself and got permission to try them from my allergist. All of this started 4 years ago out of the blue. The time before this we had decided to taper me off 40 mg and stay put when I got to 10. I was ok for a week or so - and bam! Starts all over again. So- I just keep trying things and hoping...

[Alysia]

you are cute when on high pred, and we love you anyway....
maybe its time for second opinion ? it sounds like something is going on and the docs are not focused enough on what is it and how to treat it. do you have infections ? how do you know that those are allergies and not something else ? what are you allergic to ? maybe the pred isnt enough ? I remember reading about bronchiactesis when my sweet Phil got that dx. and it was written that sometimes you need to be on antibiotics for long time.... maybe you can post here on a new thread all about what is going on now and ask the friends to make some thinking together.... maybe someone will come with good ideas...
hang in there. I ask dr. Phil to help you from his good place in heaven. if dr. Phil is in charge we can count on him.

[BookNut]

Thanks Alysia. My husband did not think I was so cute on Monday when I was slamming doors and throwing pills around the kitchen! :predrage:

I have had a gagillion opinions. I have seen 2 pulmonologists in the hospital - who have done nothing really except order a CT and send respiratory therapy folks around with nebulizer meds. Since then, I have had 2 pulmonologists. One was a complete idiot...and the other is a good guy. At least he came across as being quite thorough at first. But I have lost faith in him because I have been seeing him for almost three years. Other than a bronchoscopy at the beginning - he has done nothing. I had a PFT test when I started there and none since. He is the head of the pulmonary department in the University of Rochester (New York) and is extremely well regarded. I think the trouble is that the few times he sees me in a year, he has mostly caught me right after I have finished or as I am finishing pred. The 2 week window when I am better. I also think he treats mostly very, very serious or end stage lung issues. So...that makes me look not so bad. But - the last time took the cake. I was very bad. It was very bad, and he still dismissed me. Frustrating. I have given up on pulmys.

My ENT has been reluctant to do surgery - not sure it will help. I would push for it - but I think my sinusitis issues are pretty well under control at the moment. I am taking a new med that I found all by myself. It has reduced the mucus by AT LEAST 75%. I really had great hope that this would solve the problem. But it has not.

I would LOVE to say no to the prednisone altogether. But ... breathing is a good thing and not really optional.:biggrin1:

So....I just keep on keeping on. My ENT has me on antibiotics three times a week. My allergist upped that to 2 per day for 5 days. We've tried anti-fungals. I am on very powerful allergy shots called Xoloir once a month. Side effect? Anaphylactic shock...so I get to sit in the dr office with epipen in hand, just in case for two hours after the shot. Good times.

My allergist is wonderful. The day she started me on 60 mg, her staff called at least 3 times during the day to check on details with my husband. The doctor herself called me the next day during her lunch time to check on how I was doing. But - no one seems to be able to find the trigger. The only thing that has shown up on allergy testing is grasses and some weeds. It is a total mystery why I was perfectly fine (except for a yearly bout of bronchiectasis) for all my life - and 4 years ago this all happened. The best explanation I have found is that Bronchiectasis is slightly more common in one particular group - women over 60 who have never smoked. Go figure that one out!!

And of course - I made a stab at Celveland Clinic, only to be met with a wall of incompetent people. Reading over this rant makes me think - maybe it is just me. Maybe I am nuts. When I was in the hospital in Ohio (an emergency hospital - not part of the clinic) a pulmonologist stopped in. He listened through his stethoscope around my clavicle area (my wheezing is in the lower part of my lungs only). He never listened to my lower lungs front or back. Then he declared that I was "making myself wheeze" and I "just needed to relax". My husband hit the roof. I would really think I was crazy after that - except the nurse came right in after the doctor scurried out and she listened to my lungs and declared that I was wheezing very badly in the lower lobes. No kidding!

So - I will take my crazy self off now to the farm market with my husband to buy a bunch of nuts and twigs for my new diet. Hope that does not add to my crabbiness.

[Birdie]

Since then, I have had 2 pulmonologists. One was a complete idiot...

I know him!


only to be met with a wall of incompetent people.

Been there too.


maybe it is just me.

Probably not.


Maybe I am nuts.

That could be a separate diagnosis.


So - I will take my crazy self off now to the farm market with my husband to buy a bunch of nuts and twigs for my new diet. Hope that does not add to my crabbiness.

In the commercials for grape nuts Euell Gibbons used to talk about eating pine trees. Don't tell your husband but I think I love you. Crabbie and crazy might suck but it would suck a lot more to have no humor.

[BookNut]

Thanks! Love your sense of humor. It is what keeps us all going. Mine is peeking out again from behind the predrage, I will keep Euell Gibbons in mind as I shop for nuts and twigs. No more caffeine for 10 days. Watch out world!

[Alysia]

No way Jacquie. You are far from being crazy (my professional opinion). I hate those docs who are ignorant and arrogant at once. I saw too many of them when I was with my sweetie in the hospital.
Dr. Phil said that we have to be our best docs. So maybe we can all try to think together how we can help you ?
My brother suffers from allergies but its not so severe. You really suffer too much. Need to try to think outside the box... anyone have any idea ??

[BookNut]

No way Jacquie. You are far from being crazy (my professional opinion). I hate those docs who are ignorant and arrogant at once. I saw too many of them when I was with my sweetie in the hospital.
Dr. Phil said that we have to be our best docs. So maybe we can all try to think together how we can help you ?
My brother suffers from allergies but its not so severe. You really suffer too much. Need to try to think outside the box... anyone have any idea ??

Thanks Alyssia. Maybe I will post a history, keeping it short as possible - on another forum. Do you think this General WG forum is the best? Seems like it is the busiest. But maybe if I post the history with a different title it will catch people's attention.

I suspect that I have become pred dependent and am needing higher doses to get improvement in my breathing. I really need some techniques to get off - or at least reduce - the amount of prednisone I take. I keep thinking that if only I can get a few weeks of good health, I can use those few weeks to get out walking and improve things for myself. I usually manage about 3-4 days, and then the breathing cycle begins again.

Diet starts tomorrow. My hubby and I had a good day shopping at farm stands and grocery stores for the "nuts and twigs" on the list. Tomorrow it begins. No coffee/tea/grains of any kind/sugar/dairy. The fridge if full of veggies and I found a delicious olive tapenade that I can spread on zucchini slices when I am hungry for a snack. Blueberries for when I have to have something sweet. Only fruits allowed are blueberries, raspberries, kiwi, lemons and limes.

[Debbie C]

Yea its gonna be a long 10 days. I know I could do some of that but I need my coffee in the am and tea at night. I would pig out on every thing you want tonight ! I have been having a horrible time breathing,they said that this year pollen was going to be the worst,maybe they were right. I go see my ent on Tues and than the following Tues my pulmy. I am going to have a pft then chat with him. He always seems to dismiss me too. Like yours he was good in the beginning know he doesn't have time. He also is supposed to be the best in town so I can't wait to see what he has to say. Again good luck and tell your hubby good luck also !!!!:predrage:

[BookNut]

Yea its gonna be a long 10 days. I know I could do some of that but I need my coffee in the am and tea at night. I would pig out on every thing you want tonight ! I have been having a horrible time breathing,they said that this year pollen was going to be the worst,maybe they were right. I go see my ent on Tues and than the following Tues my pulmy. I am going to have a pft then chat with him. He always seems to dismiss me too. Like yours he was good in the beginning know he doesn't have time. He also is supposed to be the best in town so I can't wait to see what he has to say. Again good luck and tell your hubby good luck also !!!!:predrage:

I am going sort of half way. I have been reducing the sugar and dairy gradually. Tonight though, I am pigging out on a huge bowl of deliciously sweet cantaloupe. I will express your sympathy/best wishes to my husband. Fortunately, he is understanding. He too has breathing issues. Used to be very out of control - but now he is doing very well. He has done his time on prednisone - so :predrage: is well know to him!

[Alysia]

I think it is worth trying to post in this forum and wherever you think someone will be able to help.
Good luck tomorow. Prepare a good book for the tough hours. Sometimes a good book is a "food" too.

[BookNut]

Just started a good book - so there will be lots of food for the mind available. Thanks!!

[annekat]

A little late chiming in here.... I can't believe there isn't something other than prednisone that can alleviate your problems. I don't want to see you crabby and in the pre-diabetic stage. Your continuing sense of humor does cheer me up! It's inspiring that you can maintain that, with all else you are going through. I will be thinking of you as you embark on this 10 day journey, and am glad your wonderful husband is there to help you through the difficult parts.

[BookNut]

I know. I just can't seem to find any ideas. Trying to at least find ways to end the dependence. Morning 1 of the diet. I tried the recommended shake. It was truly icky. I do not care for eggs in the morning - but I am afraid I will have to suck it up and go that route. I enjoy them at night - but went off breakfast proteins when I was pregnant and never got over it. But - it sure beats the horrible shake. I am off to make some minestrone soup - minus any orzo or beans. When I go off the detox part of the diet I can add back beans, so that will be good!

Missing my coffee.....

[annekat]

You may be able to deal with not having coffee after a few days. As for finding solutions other than pred, it's sad it is up to us to find these on our own, if they even exist..... Well, I know your allergist is at least taking some proactive measures, and there is still the respiratory rehab. Reading about how those pulmys have treated you makes me angry! I'm now trying to remember the names of those really good ones we've heard about on this forum. I think one was a Dr. Loyd, whom Cindy had seen and still may be seeing... not sure where he was located. Then there was Dr. Specks at Mayo. I know you would not want to travel to either of these places but can't help but wonder if either of them, or someone else closer to you, might have some fresh ideas about how to help you. I just hate seeing this continue with no solutions.

[BookNut]

I will keep looking. Maybe I will post a request for referrals. Missing my cheese too. But I am making a big pot of soup right now, so I will have something I can heat up easy when I get hungry.

Breathing is good...but then anyone's would on 50 mg of prednisone. Gotta buckle down and research how to stimulate my adrenal glands. Lazy old things. They just want to lay around and let the prednisone do all the work!

[annekat]

Gotta buckle down and research how to stimulate my adrenal glands. Lazy old things. They just want to lay around and let the prednisone do all the work! There ya go! I've seen info on this from time to time. There's bound to be stuff on the web. Someone here, I think it was Don, mentioned massaging them, and I think he said they were on either side of the belly button. Of course, at least in my case, a layer of fat there might get in the way.... but you could try....

[Alysia]

You may be able to deal with not having coffee after a few days. As for finding solutions other than pred, it's sad it is up to us to find these on our own, if they even exist..... Well, I know your allergist is at least taking some proactive measures, and there is still the respiratory rehab. Reading about how those pulmys have treated you makes me angry! I'm now trying to remember the names of those really good ones we've heard about on this forum. I think one was a Dr. Loyd, whom Cindy had seen and still may be seeing... not sure where he was located. Then there was Dr. Specks at Mayo. I know you would not want to travel to either of these places but can't help but wonder if either of them, or someone else closer to you, might have some fresh ideas about how to help you. I just hate seeing this continue with no solutions.

the only pulmy doc I can ever trust is dr. Specks from Mayo. we consulted with him when my sweet Phil was in the ICU. he is wg expert but maybe he can help you Jacquie ? Phil's pulmy consulted him on the phone so it is possible if your pulmy will be willing to. I have all the details of dr. Speck if you want. phone and email. sent me pm on facebook if you need them.

[BookNut]

The coffee has not been so bad. I have discovered that cutting up strawberries in water makes the water only drink much better. I never drank soda or fruit juices so that is no problem. I have lost 5 pounds since starting the modified diet last week. I feel pretty good - but am still o n30 mg of prednisone - so the feeling good is probably because of that.

I wlll PM you for Dr. Speck's information. Thanks to you AND Phil for always being such a help and support!

[Alysia]

I just sent you. check your msgs on facebook.

[drz]

the only pulmy doc I can ever trust is dr. Specks from Mayo. we consulted with him when my sweet Phil was in the ICU. he is wg expert but maybe he can help you Jacquie ? Phil's pulmy consulted him on the phone so it is possible if your pulmy will be willing to. I have all the details of dr. Speck if you want. phone and email. sent me pm on facebook if you need them.

That is impressive that you some how got his contact info. I see him at Mayo and have to go through his appointment secretary to contact him with any messages or for appointments. I also feel confident in his expertise and knowledge about Wegs and lung issues. I also like his assurance he will get me seen ASAP if I have serous problems again but he thought I was doing well enough to go to annual followup visits.

Mayo also has some great allergists too. People do come there from all over the world too.

[Alysia]

That is impressive that you some how got his contact info. I see him at Mayo and have to go through his appointment secretary to contact him with any messages or for appointments. I also feel confident in his expertise and knowledge about Wegs and lung issues. I also like his assurance he will get me seen ASAP if I have serous problems again but he thought I was doing well enough to go to annual followup visits.

Mayo also has some great allergists too. People do come there from all over the world too.

Actually it was dr. Phil who had all the contact info... if you need, please send me PM.