Autoimmune Mechanism and conditions Archives

Churg-Strauss

Dearest Dr. Stoll -

I have searched your web site and not found anything to read about in regards to Churg-Strauss syndrome. Are you familiar with it? I even checked our local public library and NOTHING comes up on their database... only found it defined, etc. in the medical reference books!

My husband, Jonathan Gilpin, a former patient of yours, has been preliminarily diagnosed with this syndrome. He has been struggling with his allergy-induced asthma, sinusitis for years, as you know (adult onset). But last year (Christmas Eve 2001) he was hospitalized with eosinophilic pneumonia! We are now dealing with high levels of eosinophils in his blood work when he begins to taper off of prednisone.

Symptoms seemed to start occurring when we was getting into the low doses of his steroid taper. We have been trying to taper and get him off of them under doctors care. We have been to the Mayo Clinic in Jacksonville, FL to inquire about tapering off of the steroids. He has been on them for about 8 years (low doses and mainly in an every other day dose fashion). Mayo felt that he could taper off, and put him on a tapering regime. He was down to 4 mg every other day for about a month and then became very ill. The first symptom was severe stomach problems – nausea, vomiting, no appetite… he lost 35 pounds – and as you know Jonathan, he DID NOT have 35 pounds to lose!!! Then it "moved" to the lungs and thus eosinophilic pneumonia developed.

This all occurred last year (Nov – Dec 2001) and Jonathan under went many diagnostic procedures = stool testing (no parasites (strongyloides) were found), stomach biopsy (H-pylori was high in blood count), bronchoscopy and then a bone marrow biopsy (looking for leukemia). All of these came back negative. I am not sure if he has been tested yet for the aspergillus fungus.

In the hospital at his acute time, the only thing that seemed to "Band-Aid" his symptoms was high doses of steroids. They sent him home on high doses of prednisone (60 mg/day). He then tapered down to 10 mg every day. We NEVER came up with an answer and Jonathan seemed to get better.

In July 2002, Jonathan began the taper in hopes of getting off the prednisone, under doctors care. But, in Sept 2002 when he was due for a routine blood work to check the eosinophils... it was high, but not too high... the symptoms started recurring: terrible cough, feverish. He was out of commission for 2 weeks. The doctor put him on an antibiotic to see if that would help, but stated that it could worsen things... depending on what was really causing this... the doctor was now ready to get down to the bottom of this! The steroids were pulsed then tapered to 20 mg per day where Jonathan is now. The doctor did not want to dose him on too high steroids, because he did not want to mask things this time around! He suggested a thoracscopy (lung biopsy) to get a larger sample of lung tissue as opposed to doing another bronchopscopy, which only takes surface tissue.

In the meantime Jonathan showed the doctor the little blister-like bumps on his elbow that seem to appear at his acute symptom time. They are mainly on his elbows, knees (sometimes) and around the sideburns of his hair line (sometimes). The doctor said that before we went into the lungs he wanted to get a biopsy of those bumps. We had that done and results showed granulomas around the blood vessels... indicative of Churg-Strauss syndrome, basically vasculitis.

We have not had a complete diagnosis of this and now we feel like maybe a lung biopsy will help with more of a diagnosis - how ironic - trying not to be invasive we do a skin biopsy and now to be sure of a diagnosis we may go to the more invasive procedure!!!

In researching the Internet, and from being read to, by the doctor so that we could have some interpretations, the symptoms from the doctor's reference text, a lot of this seems to be falling into place and making some sense as to an “answer” to Jonathan’s health problems… Churg-Strauss, a vasculitis disorder, is, at least, narrowing it down.

This is a scary thing!

We are working hard at getting Jonathan onto a skilled relaxation procedure and walking. He already eats well (since his food allergies require that). We have also heard of the Primal Defense probiotics, which I thought could be very beneficial for Jonathan and his leaky gut. What do you think of Primal Defense?

Please offer what you can - if you need to call us:
859.276.5528

Please take care of yourself and...

B @ peace,
Holly

Follow Ups:

• Re: Churg-Strauss (Archive in autoimmune.) Walt Stoll 08:57:41 10/06/02 (0)

In Reply to: Churg-Strauss posted by Holly on October 05, 2002 at 09:41:18:

Hi, Holly and hello to Jonathan.

This autoimmune condition is frequently precipitated by parasitosis (of course including C-RS).

If he is like most of us, he has done wellness and reversal of his LGS imperfectly and so, over the years, his condition has progressed to Churg-Strauss. The only sure thing is that this will gradually get worse if he does not dedicate his life (for the next year or so) to getting over this.

I hope he remembers the things I suggested to him 20 years ago. If not, the information is available on this website (but will take some effort to dig out).

I would suggest finding a good and advanced holistic practitioner to help guide him through this (See the holistic practitioner archives.) It will be harder now that it is so far advanced.

He should keep up his conventional treatment until his wellness begins to make it unnecessary.

Let us know how he does.

Walt