Grrrr!! Medical Mistakes

**BookNut** · 06-05-2014, 08:59 AM

Dale, So glad there was an improvement.....but it seems like you should have them fix your chart. Are you afraid if you do, you won't get as good care??

**Dirty Don** · 06-05-2014, 09:06 AM

Yes Dale, you should have your chart fixed...has nothing to do with the care you receive as cigarette smoking has nothing to do with WG...BUT, always a but-t, er that would be me...anyway, if your lungs were affected by WG, a pulmy should be watching any problems that may occur on top of the smoking damage done. I have been doing PFTs quarterly till this year, have been reduced to semi annual now...cooool! If someone says your previous smoking habits are affecting your WG, they are very wrong...but previous damage can alter the course of care if it's bad enough. Best to you.

**renidrag** · 06-05-2014, 09:38 AM

I do think it will affect future care. If any Doc asks if I smoked I am honest.
Dale

**windchime** · 06-05-2014, 10:51 AM

Jacquie I don't know where you live, but if you are near or can travel to an academic center or somewhere like Mayo or Cleveland Clinic it might be worth it to get a second or third opinion on just what is going on. If you have to travel somewhere they will usually accommodate you with making your appointments on the same day. ie ENT and Pulmy. Just a thought. If you take all your current records you don't have to go through all the scans and blood work again. Makes the insurance company happy..........

**BookNut** · 06-06-2014, 09:03 AM

Thanks Cindy, My ENT and Pulmy are both highly regarded in the University of Rochester Medical Center in Rochester, NY. My daughter lives near Cleveland...so that is a possibility in the future.

I am feeling somewhat encouraged today....even though I feel terrible. My lab results were posted. At the end of my pulmy appt two days he said. "hey, since you have been off pred for awhile, it would be a good idea to look closely at your igg tests and your immune markers for pneumonia, since you have had that vaccine in the last year.". The labs show an igg subclass 2 deficiency...and the immunity level of the pneumonia vaccine has basicallly dropped into the toilet. I go to the ENT tomorrow and will ask him about putting me on longterm antibiotics. The next step after that would be sinus surgery, or igg infusions once a month, both of which I would like to avoid. All i read about igg2 symptoms has me written all over it! So.....fingers crossed....we might be on the right track at last. I will update this tomorrow after my ENT appt.

**BookNut** · 06-07-2014, 12:53 PM

Well...my ENT is downplaying the significance of the lowered igg2 result...but admits it is more my allergist's specialty. Still waiting to get input from the pulmy who ordered the tests. From there, I plan to discuss it all with my favorite doctor...my allergist. The ENT appt. went quite well otherwise. I had decided that I wanted to follow these standard treatments for igg deficiencies in this order:1. Long term antibiotic treatment. 2. Sinus surgery. 3. Long term prednisone or monthly IVG transfusions...which ever fits best and is the least disruptive. Guess what? Minus the IVG, that is EXACTLY the course of action the ENT recommended. Hopefully numbers 1 and 2 will be as far as I have to go. Fingers crossed!! If nothing else, the research has been fascinating. Such a surprise to read that from a librarian!!

**pberggren1** · 06-07-2014, 10:39 PM

I sure don't like the sounds of the long term antibiotic treatment and the sinus surgery. Long term pred use is even not that nice. What exactly is being treated here? What exactly is IGG and is a deficiency of it something to be concerned about?

**BookNut** · 06-08-2014, 05:04 AM

Originally Posted by pberggren1

I sure don't like the sounds of the long term antibiotic treatment and the sinus surgery. Long term pred use is even not that nice. What exactly is being treated here? What exactly is IGG and is a deficiency of it something to be concerned about?

Phil,

You will be sorry you asked. Feel free to zone out. Writing this answer will help consolidate my thoughts on my recent research. Here goes...

The long term antibiotic treatment is something that is often prescribed for breathing and sinus problems. It is also often prescribed for COPD. My pulmy informs me emphatically that I do NOT have COPD, even though it was there in my online chart. BUT, he did say it might be helpful for my current problems. The ENT said the same. It is 500 mg tablets three times a week of Arithromycin to start with. After a period of time, we switch to a different antibiotic within that particular class of antibiotics. Macrolides...or something like that. They have been found to have anti-inflammatory properties that help in cases like mine. To me, this is the best choice, as the prednisone has already messed with my Immunoglobulin readings.

You might want to research immunoglobulins. Immunoglobulins are the properties that govern our immune system. I believe in WG, they are often OVER active, and often call for immunosuppressants. In my case, they would appear to be under active, and would call for immune boosters. There are categories of immunoglobulins. Off the top of my head, there is IgE, which governs allergic reactions. Then there is IgG, which deals with bacterial infections. There is also IgM, and IgA. Possibly more. Within each of these categories, there are sub-classes. IgG has 4 of them. I am low in IgG subclass 2.... which results in chronic sinusitis, bronchiectasis, asthma, bronchitis etc....every symptom I have, including constant dental problems. I am awaiting my pulmy to see his take on the results. Once I have his input, no matter what it is, I will talk to my allergist and INSIST that this be pursued. I have pulled together all my labs from different systems, and they show a consistent lowering of the IgG2 subclass over time. The treatments for it are the three that i listed in my last post. I like the first two options the best. I truly hope to avoid long term prednisone as I hate the side effects, especially of long term use. And blood infusions once a month at the doctors office, or weekly self administered subcutaneous infusions at home is certainly extremely unappealing!

Anyway...nothing is definite yet, except I will be starting the antibiotic soon. I am allergic to the dyes in the usual brands available in pharmacies, so my ENT is arranging to have it special made for me from a compounding pharmacy which will come to me in the mail.

Whew!! A good part of my research comes from this Medscape website. Medscape: Medscape Access

In the immortal words of Bugs Bunny...."Thhaaaat's All Folks!"