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BookNut
07-07-2014, 06:17 AM
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!! :hug3:

BookNut
07-07-2014, 06:19 AM
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.

Pete
07-07-2014, 06:53 AM
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!!

BookNut
07-07-2014, 07:57 AM
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!

BookNut
07-07-2014, 08:03 AM
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.

LisaT
07-07-2014, 11:42 PM
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. :unsure: 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.)

Psyborg
07-08-2014, 12:41 AM
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.

BookNut
07-08-2014, 03:11 AM
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.

Psyborg
07-08-2014, 04:39 AM
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.

annekat
07-08-2014, 04:57 AM
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.

BookNut
07-08-2014, 05:08 AM
Yes...it makes sense to give it a try

BookNut
07-08-2014, 05:12 AM
Thanks Anne. I will start looking into what i need to do to get a referral to someone at CC.

I don't think I had an actual biopsy. The ent definitely took samples which showed up a certain kind of bacteria. The antibiotic he prescribed was targeted at that bacteria.

BookNut
07-08-2014, 05:19 AM
Thanks Lisa. I am lucky to have a Primary Care who has an integrated medicine practice. I will ask her about what you mention here. At her suggestion I have eliminated wheat. i do cheat upon occasion...but don't notice any effects to a small slip. I will give eliminating dairy a try. But I don't know how I will manage without my yogurt. The non dairy yogurts have a lot of carbs. I've eaten wheat and dairy all my life...but all of this did not start till 4 years ago. Odd.

drz
07-08-2014, 10:53 PM
Thanks Anne. I will start looking into what i need to do to get a referral to someone at CC.

I don't think I had an actual biopsy. The ent definitely took samples which showed up a certain kind of bacteria. The antibiotic he prescribed was targeted at that bacteria.

Have you inquired about a self referral? Often this is easiest. The Clinic can request info from all the other doctors but it is often best practice to advise these doctors ahead that you are going for a consultation or second opinion at another facility. If your case is puzzling and confusing, they will be relieved that you initiated it. Any good physician will be happy to follow through with the recommendations from the "expert" if you also agree with the plan and it makes sense medically.

annekat
07-09-2014, 02:02 AM
I hope self referral is an easy option. I'm on Medicare and am supposed to not need referrals but am finding that some docs require them anyway. Even my ENT's office wanted one after I'd switched plans and hadn't been to him for a long time, so I got one from the pulmy that the ENT had referred me to! And I was told by the front desk they want one once a year, or something like that, because insurance has become so complicated. Weird. But I think I may have heard of someone on here, or more than one, being able to self-refer at the CC. I hope so, if that is the easiest option.

Debbie C
07-09-2014, 05:20 AM
Jacquie, I also go to CC and see Dr. Gary Hoffman as a reumy. As far as needing a referral ,you don't. You can look into their webpage and you can look up different drs. by their specially such as pulmanary and ent and I am almost sure they just opened up a food and health center there as well. I go in Sept. and I was going to see about going there at the same time. But alot of times when you call they will ask if you need an appt for the next day. That would be unlikely for that to happen since you would be a new patient. But you should try and see if you could get appts with different drs. the same day. And make sure you take along any med rec or copies of any scans you have ( I get copies of EVERTHING ) your hosp will put them on a disc. for you and they can be read there. I don't know how far your daughter lives from the clinic but if needed they do have motels close by that give discounts if u tell them you are going to the clinic and also shuttle buses. Let me know if you need any other info and Good Luck...hope you get this all figured out soon and we know just exactly what to call you...non-weggie !!

BookNut
07-10-2014, 09:32 AM
So far I like Honorary Weggie - but should the diagnosis be different, I would be pleased to at least KNOW, and I would be proud to be a full-fledged member of the group!!

Thank you for the recommendation. I am assembling everything together as far as paper work goes. I will ask about getting all records onto a CD. Not sure exactly when I can pursue all this. My soon-to-deliver daughter must get all of our attention right now. When things settle down a bit....

She lives between Cleveland and Sandusky. There seem to be a few different options in the area. But I need to buckle down to some serious research.

Thanks again for the help!

Ruotsi1
08-17-2014, 01:39 PM
I saw Dr. Villa-Forte for the first time this past week. I was extremely impressed, to say the least. I traveled from Washingtin state and will likely be back in the next month. I self-referred and had no issues at all. I did confirm that my insurance was going to cover services done in Cleveland prior to going.

annekat
08-17-2014, 02:34 PM
I saw Dr. Villa-Forte for the first time this past week. I was extremely impressed, to say the least. I traveled from Washingtin state and will likely be back in the next month. I self-referred and had no issues at all. I did confirm that my insurance was going to cover services done in Cleveland prior to going. That's great. I wish someone like her would come and practice in this area, say, at the UW rheumatology clinic. I do hear there are some pretty good docs at UW, though.

Ruotsi1
08-20-2014, 08:08 AM
I have not tried UW, my rheumy is in Lakewood, and I think she does a pretty good job. It will be interesting to see how the doctors work together to optimize my care.

annekat
08-20-2014, 08:31 AM
I have not tried UW, my rheumy is in Lakewood, and I think she does a pretty good job. It will be interesting to see how the doctors work together to optimize my care. If you don't mind, I'll send you a private message and ask for the name of your rheumy and where she practices. I need a new doc, and I need a rheumy instead of the pulmy who has been treating me.