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Thread: Need a Cleveland Clinic doctor recommendation

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    Default Need a Cleveland Clinic doctor recommendation

    I've about had it with my "asthma-like" illness which has just steadily limited my activities for almost a year now. The previous three years were not so bad - but this year is ridiculous.

    I started a long term antibiotic regimen - but I don't think it is helping. The cycle is as follows: 1. Get sick 2. Try to tough it out 3. Give up and go on a 16 day pred taper. 4. Feel a little better for the last 5 days of the taper. 5. Feel almost normal for a week after stopping. 6. Start getting worse again the second week after stopping. 7. Rinse and repeat.

    I am on step 2 yet again. Will need pred again in a few days. This cycle has been going on uninterrupted since September. Sick of it.

    I know many of you go to the Cleveland Clinic. It is a 6 hour drive from us - but our daughter lives only about an hour away from the clinic. So....I could easily stay with her.

    Remember - I do NOT have Wegeners', so I would need a doctor(s) who is very good with each of my diagnoses which I know often go along with Wegeners: asthma, chronic bronchitis, bronchectasis and chronic non-allergic rhino-sinusitis. I do have slightly lowered immune levels - especially the IgG 2 subclass. So, I am interested in the following:

    1. A good ENT and/or
    2. A good immunologist who deals with BOOSTING the immune system which would probably be the opposite of what a weggie needs. And/or
    3. Possibly a good pulmonologist, since the most troublesome symptom I have is periodic shortness of breath that makes a trip to the kitchen in my small house feel like a marathon, leaving me gasping for breath.
    4. Mostly someone who is willing to spend TIME with me, and would be open to working with the doctors I have here in my area.

    I like all my doctors here. They spend time with me. I am probably hoping for a treatment that just does not exist. But I feel that I must keep trying.

    Feeling very discouraged today. Thanks for reading all this and I will appreciate any ideas and doctor recommendations you can share with me. Thanks guys!!
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

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    Pete, I just saw your recommendation for Dr. Alexandra Villa Forte - so I will add her to my list and do some research. I will also continue to look through that thread, which I did not see when I first looked o this part of the forum.
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

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    Quote Originally Posted by BookNut View Post
    Pete, I just saw your recommendation for Dr. Alexandra Villa Forte - so I will add her to my list and do some research. I will also continue to look through that thread, which I did not see when I first looked o this part of the forum.
    Dr Villa Forte is a rheumy, so I don't know for sure if she'll diagnose you, but she may rule out some things. I think she would take the time to give you a thorough exam. Has Churg-Strauss been ruled out for you?

    Good luck!!
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    I will look up Churg Strauss and see what I think. a rheumatologist is probably not what I need since my problems are all sinus and lung related. I will look into the other disease to see if it fits at all. I really want to stay off prednisone so I don't end up with diabetes. Thanks!
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

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    Pete..I looked it up and it seems to be related to allergies and an overactive immune system. I appear to have an under-active immune system and very low markers for allergies. Grasses and some trees are pretty much it. Some flowers make my eyes water and make me sneeze in June. Then that ends. So, it does not seem to be allergy related. But I will mention it to my allergist/immunologist and see what she says.
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

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    Jacquie, I'm sorry you're having a discouraging time. It is impossible not to get discouraged some days with all that you're dealing with. You maintain your sense of humour though (I love step 7. Rinse and repeat!). I don't love that that is your situation, but that you're able to make light of it to that extent is a good coping mechanism. I think it's great that you will forge ahead and keep trying for solutions. We can't just accept status quo as our fate when it has such an impact on quality of life. You need to be able to walk to your kitchen without feeling like you've run a marathon. I hope you find the right doc who can really help you get to the bottom of it.

    W.r.t. Allergies, you could have intolerances that affect your symptoms but don't 'test' positive for allergies. Have you ever been to a naturopath? They look more at the foods to which you are sensitive, which cause problems in your digestive system and/or respiratory system without necessarily creating the standard medically-recognized allergic reaction. I tested (through the naturopathic tests) as sensitive to wheat and dairy, and my respiratory symptoms are much improved without either in my diet. If I slip up and either cheat or have some by accident (it's shocking how many servers will just say, "oh, yeah, that has no dairy" without checking or thinking it through), I immediately have problems-- narrowed breathing space, more dry sticky phlegm, coughing and sometimes choking. It may be worth eliminating these for a while if you haven't already, and if you show improvement you would know you shouldn't eat them, or getting tested through a naturopath.

    let us know how the search for a Cleveland Clinic Dr. goes. It sounds as though a team approach would be most helpful (ENT, pulmonologist, maybe rheumy? I feel like if it looks and act like GPA/WG, then a dr who treats the disease may be able to help you.)
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

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    Jacquie,

    May I ask how they have eliminated WG as a possibility? I believe that some people are determined to have it by a specialist even lacking in biopsy's or ANCA elevation. I'm sure you've said before, but my memory is shot

    I'd second Dr Villa-Forte...she's my doctor as well. My Pulmonologist in Cleveland is Michael S Machuzak. He is quite good a with WG as well.
    ~ Bob

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    Quote Originally Posted by Psyborg View Post
    Jacquie,

    May I ask how they have eliminated WG as a possibility? I believe that some people are determined to have it by a specialist even lacking in biopsy's or ANCA elevation. I'm sure you've said before, but my memory is shot

    I'd second Dr Villa-Forte...she's my doctor as well. My Pulmonologist in Cleveland is Michael S Machuzak. He is quite good a with WG as well.
    Bob - thanks so much for the recommendations. That is very helpful. I am feeling quite a bit worse today, so perhaps I should try to see someone when we go to my daughter's house. She is expecting on July 17, so it could be any day now that we leave. I am struggling today to get my clothes washed and packed, and my medicine organized and ready. I've only enough breath to do a little at a time.

    I was briefly diagnosed with "mild wagerers" by an immunologist a year or so ago - based on a slightly elevated ANCA. I had already researched it as a possibility given my symptoms. Since all the literature about Wegs indicated that untreated wegs was fatal in a matter of months, and I had been having the same problem for about 18 months at the time - I was skeptical of the diagnosis. So - before I started on the imuran she prescribed, I got referrals to an excellent pulmunologist and an ENT. My pulmonologist looked at my numbers, retested me, did a pulmonoscopy (I think that was what it was called) and ruled it out. He seemed to be quite puzzled that it had even been thought of. The elevated ANCA was either a P-ANCA or a C-ANCA - whichever one is LEAST indicative of Wegeners. My asthma doctor keeps referring to my problem as my "asthma-like" disease. Evidently it does not fit the criteria very well. She also says that NON-allergic chronic rhino-sinusitis is the most troublesome of the sinus problems to treat. It not being fatal, I think it gets very little research attention - but it sure can change your life style! According to my pulmonologist all the lung problems originate with the sinuses. Surgery? I think I am going to have to give it a try. I just don't feel comfortable about it, since my ENT is very noncommittal about it. I understand there are no guarantees. But you want your surgeon to say things like - "I have many patients who have had great success with this." He just kind of shrugs and says, 'Well - you COULD give it a try if you want to." Frustrating. He was very thorough in his exam, and takes lots of time with me - but seems to have no answers. Samples were taken and analyzed from my pulmonoscopy and my endoscopy(not sure of the name.It was the procedure done by the ENT). Nothing of note from the pulmonoscopy. A couple of bacterial agents were found from the endoscopy. So - I have been treated off and on by antibiotics and now am on a long term regimen with clarithromycin. I have also had multiple CT scans. I think maybe my doctors think I am a hypochondriac, since nothing particularly alarming shows up in the scans. Some mild bronchiectasis and some moderately congested sinuses.

    So - I guess it is not Wegeners. I am trying to hold out for a few more days on the pred. My asthma doctor wants me to have a few tests after I have been off pred at least two weeks - longer if at all possible. I think I will have to go tomorrow as I don't think I can be off prednisone much longer. It has been 17 days - which is probably longer than I have been for the past few months.

    Anyway - that is WAY more than you wanted to hear I am sure. Thanks again for your recommendations.
    Last edited by BookNut; 07-08-2014 at 03:16 AM.
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

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    I think a second opinion is warranted Jacquie. Worst case scenario is you see some good doctors that might give you different insight into what is going on.
    ~ Bob

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    I concur with Bob that you could get a good rheumy, such as Dr. Villa-Forte, to positively rule out WG, or not, and make other suggestions as to where to turn. Since you will be in Cleveland anyway, might be worth a try, along with whatever other doc there would fit your case. I'm sure your docs in NY are OK, but they don't have the kind of experience concentrated in one place like the CC does.

    Oh, and BTW, I also had a very low ANCA reading at diagnosis. WG was confirmed by a nasal biopsy. I don't remember if you ever said you had any sort of biopsy.
    Anne, dx'ed April 2011

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