Trying Environmental Medicine

[Sarah05]

Despite some improvement in my bladder symptoms due to physical therapy, diet, and elmiron, I have been gradually getting sicker. I have really not been well for over ten years, starting with seasonal allergies when I was a young child, muscle and joint problems, emotional problems, and most recently, mental problems (I was an above average student with a great short term memory, and now I have trouble reading adult novels and have memory problems). The past three months everything (except the bladder) has worsened, my allergies and chemical sensitivities especially, I have lost half of my hair, and gained 25 pounds despite no diet and activity changes. In short, my body is failing in every imaginable (yet "undiagnosible") way.

At the end of last week, I went to the Center for Occupational and Environmental Medicine in North Charleston, South Carolina. These doctors focus on treating many types of systemic overload, including doing extensive allergy testing, detoxification (which I will not try unless I become unable to work, which is unfortunately looking possible, as it is expensive and requires at least a month), homeopathic treatments, hormone testing, endocrine testing, all sorts of approaches. They, unlike most of the other MDs I have visited, look at all of my problems as interconnected, something I have been convinced of since the beginning. These are MDs who have treated IC patients before, and they have impressed me by not making wild promises as less ethical health professionals seem to do, especially to people as ill as many of us, who are, naturally, desperate for hope. They are, at this point, optimistic that they can help me over time.

I wanted to post this on the message board to let everyone know what I am trying, and I will place updates as well about what I have done and what results I see.

Sarah Graham

[Janie Miranda]

sarah,
Looking forward to following your updates. I hope they figure out something to help you.

[massagedoula]

I am interested too. Keep us posted....I am getting blood tested for 96 foods soon to see if I have reactions to them....

[purpleviolet]

I've had some experience with alternative allergy testing - none too positive. First to say I went to Batyr natural Clinic, which is the naturapathic authoriity and they are conservative and scientific because they are a school. They told me that these places that test your blood for a zillion things - they have sent in the same blood in and gotten different results so to them the gold standard is a boring long drawn out elimination diet, not a blood test. Once I went to a NAET allergy naturopath and she sent me to her office buddy to have me hold some electonic tube things in my hands that beeped different tones when vials were dropped into a machine. According to that I was allergic to almost everything. I left that office never to return. I did the blood test too though that was years ago and it found allergies to many different things but didn't match up. I think the blood tests are interesting though. I'd still do it and if eliminating those foods work then who are we to say. Just be skeptical.

[massagedoula]

Good advice...

I am always a little skeptical of things, whether they be alternative or allopathic. My naturopath graduated from Bastyr and she told me that the allergy testing is not always correct, however if a food appears on the list that there seems to be a huge reaction to, most likely it will actually be an allergen...so I am trying it....

Hey! I had that test where I hold the copper rod too! My mother-in-law brought me to this lady last time I was in the UK who does it. I came up sensitive to sugars (except date sugar and fructose) and corn. For 2 months I thought it was a bunch of phooey...I mean, how can a machine know what a food is anyway? But after a huge flare recently, I tried giving up sugars (except fruit and dates) and corn. I don't know if it has anything to do with it, but I have now gone a good 3-4 days with barely any pain, which is very unusual for me (constant symptoms are my norm). Who knows...but I can sure live without sugar and corn and probably be better off for it anyway....!

As far as the blood test for allergies, I am still waiting for it to come back. I will decide how I feel about it when I see it.

I am doing that long drawn out elimination diet from Bastyr too, by the way. For 2 weeks I am going w/o sugars and dairy, then I will try to integrate them back in and see what happens. My naturopath knows that I am on the IC diet too, so we are being conservative and only stopping a few things at a time, so I still am able to eat anything at all!

[purpleviolet]

I wish I could say these tests just showed sugar and corn, but I was supposedly allergic to about 80% of things they tested! At Bastyr I did another type of allergy diet. I ate basically cabbage and soy for 3 weeks, then I added in a food every three days - by then I faded out - I got sick and had to have my chicken soup. I got some sort of rash, so maybe I was allergic to something. During the diet which was so bland IC sort of quieted down, but not totally. It shoud have been an IC diet. It sounds like you have a better approach to it. It would have taken a year to add everything in if I had stuck to it. Its hard with a family too. We eat Chinese/Italian all the time. A little spaghetti sauce does not make me flare. I saw something of interest in the ICN IC optimist about the potassium sensitivity test - that if you were sensitive then Elmiron or Cystistat would work because they coat a leaky bladder. I don't think I ever had that test, so I don't know how sensative I am to potassium.

[Sarah05]

The clinic I went to did the injections, but not like the last allergist I went to, who did them all at once. This clinic does them one at a time, waiting for reactions other than swelling in the injection site. I had such a strong reaction to molds that I lost balance, got my first migraine, and spoke like a stroke victim for five days. I had to go in for treatment.

At this point, in the middle of one of the elimination diets that has not been nearly as horrible as the one mentioned above, I would love to go for one of those copper rod tests! (Soy and cabbage? Soy bothers my bladder!) This diet, called the Stone Age Diet, basically had me eat uncommon foods (with the theory that foods eaten most often are more likely to be allergens). But the copper rod sure sounds easier, and I'd love to compare results. Especially since I am not doing any more injection testing for a while.

I have confidence in this doctor, though, looking at all of my conditions from a perspective of systematic overload rather than trying to just look at my bladder. My whole body is sick, not just one organ, so a wholistic approach seems much more logical.

Sarah

[purpleviolet]

Sarah05 - what type of doctor? Is it a regular allergist? I've heard that we do get allergic to the things we eat the most of. The naturopathic I was to see was to supposedly get rid of my "allergies" using NAET, a very controversial technique. but I could see a very expensive and dubious treatment coming, so I didn't return. I already had paid her for her homeopathic treatment which did nothing.

[massagedoula]

Purpleviolet,
I also was dubious about NAET. I read about it on "another" message board and asked my naturopath. She said to not waste my time, it was too expensive and there was a lot of controversy about it.

[ICNDonna]

Soy and corn are both potential bladder irritants. I can eat corn occasionally, but rarely eat anything containing soy.

Donna

[Sarah05]

I've never had problems with corn myself.

The doctor is an MD who specializes in environmental medicine, especially complicated cases of chemical sensitivity and allergy as well as difficult diseases like MS (and a couple others with IC).

Sarah

[massagedoula]

Sarah,
Let us know how you do on this? Does the type of thing he does have a name so we can look it up and find out more about it? Where did you find this guy?

I also looked back at some of your previous posts (I like doing that, it gives me a feeling that I know where someone is coming from in terms of history with IC) and noticed that you were taking Elmiron. Do you still take it now? Are you taking any other meds or are you just doing this allergy treatment?
I am curious!

[kay1511]

Hello Sarah -
This is my first post, although I've been reading these forums and getting tremendous support from them since being diagnosed w/ IC about 3 months ago. Prior to that, I was in that "I'm so desperate I'll try anything" stage and had also traveled to the Center for Environmental Medicine in Charleston to which you referred in your post. This is what prompted me to register and reply to your post.

I'm curious to hear how you're doing with their treatment protocol. I too was quite hopeful after my first visit there in August, accepted their verdict of allergies and general system overload and followed the strict diet and supplement plan to the letter - and felt worse and worse over the following weeks. My calls (pleas!) for help were ignored for days, which was quite a shock to me after all the time they had spent with me in the office and their stated focus on being responsive to each patient's needs.

Fortunately, another doctor had referred me to a urogynecologist in Atlanta, whom I visited a month after seeing Drs. Callahan and Lieberman in Charleston. The urogyn diagnosed IC and I have been slowly but surely responding to treatment ever since. I kept a previously-scheduled followup call with Dr. Callahan, just to see what he would say about the IC diagnosis - which I felt was a fairly significant thing for him to have overlooked, since I spent an entire day there and more (out-of-pocket, of course, since they don't accept insurance) money than I care to remember for the visit, tests, pills & powders, etc. His response to this info was silence . . . and I haven't received a bill yet for the call, which is most unlike them. Interestingly, even during this call, he never said that they had treated anyone for IC, as he seems to have told you.

So that's why I'm curious to hear what your experience with them has been so far. I have to admit that I have grown quite skeptical. I too have quite a history of allergies, low energy, "foggy brain," menstural irregularities, and have chronic urticaria (hives - had for 5 years now) etc. and I too thought that their point about the whole body being overloaded sounded good. It just turned out for me, however, that much of the overload has probably been caused by something that they totally missed. In addition, the caveman diet they put me on contained a heavy emphasis on many things (bananas, other fruits, etc) that I now realize made my as-yet-undiagnosed IC go out of control.

I know your post was dated a month or so ago, so not sure where you are with them now, but I would love to hear your experience so far. I do hope they have helped you, as they seem to have helped others such as the people I was in the waiting room with while there. If there is one thing I've learned through this whole experience with figuring out a treatment, it's that finding something that helps is an individualized and ongoing process and it would be really nice for me to hear that they've been able to help you.