Wednesday, September 4, 2013

Hill Park Visit #1: A Shift

With high hopes and deep trepidation in equal measure, I went to see a specialist at last. Two weeks later I've finally got a little energy and mental clarity I can use to blog it up, and I would love to think this energy (though fueled by steroids as I'll explain further on) might herald a shift after 6 years ill.



I will try to go into some detail here, both for the benefit of fellow patients who (if they can read the whole thing or get someone to read it to them) will want all possibly particulars, and for my own benefit. Until today much that we discussed was hazy to me and I was afraid my scrawled notes wouldn't be enough to remind me of all that was covered.

Dr Brian Bouch has been practicing integral medicine for about 30 years, working quite a lot with ME, GWI, Lyme and similar illnesses. He practices in Petaluma, CA at a clinic called Hill Park. I had not heard of him before -- Trepidation! But he came highly recommended by one of my acupuncturists -- Hopes! He was more accessible to me, in terms of both location and fees, than other specialists I'd considered seeing, so that fact tipped the scales in his favour and I made the appointment.

We had an appointment of about an hour and a quarter, plus I spent a little more time with staff who conducted one test and explained procedures for some lab tests. The time spent waiting was not unreasonable, and the doctor and his staff encouraged me to lie down as long as I needed when I was tired.

The fees for both the visit and some testing, maybe even some treatment, were provided by kind donations of family and friends. I wanted to make certain those funds went as far as possible. My daughter and I, both ill, live on fixed incomes that barely cover living expenses, so it was only through those donations that we could see a specialist. Specialists for our weird disease(s) do not accept payment via MediCal/Medicaid or indeed, often, any insurance.

I brought with me the ICC primer and while he saw me, Dr Bouch had his staff copy it for him. Though disappointed that he wasn't already familiar with the publication, I felt his receptivity was a good sign. I felt further reassured by the questions he asked and information he referred to, and the tests he ordered.

As a practitioner of integral medicine, he seems to have a foot firmly planted in each world: a confident conventional MD and an equally knowledgeable user of alternative modalities. He started me on herbal licorice root to raise blood pressure (something my acupuncturist had also suggested) but he also suggested we test for HHV6 and, depending on result, possibly go with fairly high doses of Valcyte. So I feel good knowing that we're seeing someone who will work with all the available tools regardless of which medicine bag they're kept in.

Despite unfamiliarity with that primer from the ICCME, Dr Bouch seems to be pretty up to date on the research. Regarding HHV6, he mentioned the work of Dr Montoya at Stanford, and the good outcomes many of his patients and research subjects have experienced with Valcyte. He also mentioned mycoplasma in Gulf War Illness, and the similarity of many of these neuroimmune diseases.

In addition to licorice and Valcyte, among possible treatments Dr Bouch threw into discussion (depending of course on test results) were 5HTP, L-Tryptophane, self-administered B-12 shots and the steroids I mentioned I'm on right now.

Steroids: what's that about? Well, interviewing and examining me, Dr Bouch determined that I have not got osteoarthritis as earlier diagnosed, or else I have only a mild case. (A look at my xrays will decide for sure.) But osteoarthritis or not, what's really causing the screaming pain in my hips, increasing over the last two years and more, is trochanteric bursitis with iliotibial band syndrome. My physical therapists and then my GP confirmed this in their reexaminations, and adjusted treatment accordingly, and today my GP shot some cortisone into the left trochaic bursa.

The effects are astonishing. So far, no relief of the bursitis pain -- indeed, it's a little worse, and that's as my GP said it might be: often worse before it gets better. What I am enjoying thus far are the side effects of energy, mental clarity and decreased generalized pain. I hope the inflammation in my bursa will diminish as a result of this treatment, but even if that doesn't work, I would love to get a shot like this every day.

Alas, that won't happen, but I do get another shot, in the other hip, next week. I will plan my day to include some pleasurable outing afterwards, I think, to take full advantage of the boost both from the steroid itself and from the local anesthetics admixed with the cortisone: lydocaine and m...something else that ends in a "caine." Anyway, as these locals weren't mixed with anything to keep them in the one injection spot, they went coursing happily through my bloodstream, filling me with this wonderful sense of wellbeing, while the cortisone itself is boosting my energy. Combined, they made me feel actually well, for a little while, aside from the familiar pain in my hips.

As to that pain, the insult of the injection (it hurt like a snakebite and a half) and the initial aggravating effect of the cortisone in my left hip have balanced out to be about equal again to the untreated pain in my right hip. So, so far, so good, and the temporary absence of my usual overall nerve and muscle pain is a more-than-fair tradeoff.

While my GP provides the cortisone that might prove the turning point for my hip sockets, the physical therapists I've been seeing at Cotati-Rohnert Park Physical Therapy, for presumed osteoarthritis, have also adjusted treatment according to the new diagnosis of trochanteric bursitis. Slightly altered exercises, herbal recommendations (for ginger and turmeric, both excellent anti-inflammatories) and even altered massage techniques, plus a new and better TENS unit, have all come out of this PT response.

So already I owe a great deal to Dr Bouch, who was the one to spot the correct diagnosis. He does seem to have a good eye for what Dr Byron Hyde points out in his wonderful little book, Missed Diagnoses, are so often the overlooked and treatable actual diseases or coinfections of ME patients.

So now, back to the appointment two weeks ago, with Dr Bouch. One of his staff did a modified test for POTS on me, but it came out inconclusive - a result which neither confirms no rules out POTS, though something like common syndrome within the complex picture of ME iscertainly indicated by my symptoms. The test was far less grueling than the infamous Tilt Table, but it did require me to stand in an uncomfortable lean against the wall, for fifteen minutes straight - a feat I would not have imagined could be so difficult.

Aside from looking at my B12 levels and other tests already performed on my GP's orders, Dr Bouch is having me get the following new tests:

HHV6
H-Pylori
Bone Density
C&S
O&P
Adrenal Saliva Cortisol Test
heavy metals test

We will eventually go for better Lyme testing than I've had so far, as well. Depending on test results, treatments my include, as mentioned, Valcyte, B-12 injections, 5HTP, L-Tryptophane, and the antibiotic treatments for Lyme. Another treatment we discussed, sadly expensive: if the heavy metals test shows high levels of mercury, Dr Bouch will be wanting me to get my amalgam fillings replaced.

After about an hour of interview and exam followed by even a minimalistic POTS test I was far more tired and confused than I realized, but the staff, well aware of ME patients' limitations, gave me all the time I wanted to lie down, drink a little tea, and rally my energy for the trip home. I thought I was ready to go before I was -- they must have noticed I wasn't looking 100% and did their best to encourage me to rest longer -- so I missed several points in the demonstration of how to use the test kits they provided. Staff were very helpful when I had to call back and email later with a wide range of questions on everything from which tests were highest priority, to how and where to get them done, and which of the discussed treatments we could begin before or without testing.

The tests themselves loomed as a formidable expense, two alone coming in at around $700, but with understanding of my financial constraints, Dr Bouch and his staff, and my GP and her staff, are working together to find and order insured alternatives for as many of the tests as possible. Once we have been through this process with my own tests and treatments, or at least had about a month of starting down that road, we may be able to estimate an amount for my daughter's similar tests and treatments. That will be a big help with further fundraising and yes, we are going to need to do quite a lot of fundraising to bankroll this entire process. There will be follow-up doctors' visits and tests to follow up and recheck other tests, and of course treatments, and it's only as we go along that we can learn which are and which are not going to be covered by MediCal.

I hope money won't completely stall this process. I'm looking into fundraising options and that is a third purpose of this blog post:
  1. share information about a clinic many of us ME patients hadn't heard of and relate the story of my treatment there; 
  2. organize and remember my notes and thoughts on my first visit; and 
  3. start putting the information of what it is we're trying to do and how, into a format that can become the basis of an appeal for further funds. 
All that is a ton of work, particularly for an ME patient who isn't going to be on steroids every day, so can usually manage to write no more than a whimsical bit of doggerel these days. I'm not going to be able to produce one of those highly-technical patient blogs, that throw around the clinical and research terms so laissez-faire, with a working knowledge of the actual levels of this and that we look for in the test results, but I may be able to rough out a picture of what Dr Bouch is doing and why. And I do have high hopes, currently strongly favoured over deep trepidation.

With a team that includes Dr Bouch himself and his excellent staff, my acupuncturists, my GP and her excellent staff, and the physical therapists, all friendly to both traditional and alternative modalities, I think that I - and my daughter too, when she's well enough to make it to her initial appointment - stand a good chance of improvement, at least, at last. But who knows what waits in test results... I will do my best to keep you, my friends and fellow patients, informed. We will find out if Hill Park merits a place on lists of ME-literate cinics. Already I'm feeling a shift, and I don't think it's only the seasons.

2 comments:

  1. Wow, so happy for you. I'm glad I found your blog. I've had no luck with any doctors in Seattle and am considering somehow traveling to California. Would love to hear about your test results. One of my doctors ordered better Lyme tests, but I can't afford them- or the heavy metal test. But I did just do an adrenal saliva test and a mycotoxin test. Waiting on results from NutrEval and 23and Me. Good luck!

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    1. Oh, good luck to you too - glad you got some tests run, and I hope that doctor will find something to treat, and treat it. Every little thing that's found and treated can mean an incremental improvement in our health.

      There's an update or two on my care at Hill Park, more recently in this blog. Lemme see... rummaging...

      Here: http://itsonlymeitsnotmymind.blogspot.com/2013/11/hill-park-report-card-my-first-follow.html

      And then here: http://itsonlymeitsnotmymind.blogspot.com/2014/01/marked-improvement.html

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