Wednesday, April 25, 2007

Quack, quack, quack.

This is a post I've been debating writing about for a long time now. It's my post about alternative medicine and it'll probably be long and incoherent because that was what my experience was like. You see there used to be a time when I underwent some pretty weird treatments in search of a cure for diabetes. I'm obviously still diabetic, but I don't want this to become a bitter or angry post. I am not pointing fingers at anyone, conventional doc or alternative doc. I'm past that...I just want to put this out there in the hopes that you find it interesting or that it gives you a little more insight into the lesser known medical community out there. I still believe that the medical community as a whole would greatly benefit from an integration of conventional and complementary therapies instead of mud-slinging, but that's never gonna happen so whatev. It'd be nice though - you'd get rid of quacks and at the same time give proper respect to new and developing therapies without automatically crushing them in the name of big pharma.

My foray into the realm of alternative medicine and nutrition started when I was still a little kid. I wouldn't call my parents commune tree-huggers by any stretch of the imagination, but they did have some good friends who were pushing this blue-green algae product. The algae was harvested from Klamath Lake in Oregon and was marketed as a "superfood" - in other words, grown naturally, full of nutrients, no pesticides, not overcooked, no preservatives. I think we started popping back the algae pills - as a family - when I was about 10 or 11. The thing is, these pills could never hurt you, so looking back on it I don't mind taking them. At the very least I consider them to be part of my daily green vegetable serving...and if I didn't eat anything else green that day, at least I ate the algae. My mother swore that they made her menstrual pain disappear. As a kid with effortless good health, I didn't notice any effects one way or another. In my mind they were basically vitamins.

Fast forward about 8 years. I wasn't as active an algae taker, and my parents weren't either - they were still consumers, but they were no longer interested in trying to peddle the product themselves. I think this was mostly due to negative reaction by family and friends ("Pyramid marketing scheme, awesome.") and also because it took a hell of a lot of time and start up cash.

I get diagnosed with diabetes. We learn right quick about insulin - about treating the symptoms in order to survive. My parents, and especially my mother, I think, were so desperate to see me get better. They were ripe to the suggestion that maybe this could go away, and all conventional medicine could tell them was "a cure will come soon" I don't blame them for what they did; hell, I was 18 years old and I went along with it. I think that to this day they are still wrapping their minds around the fact that one of their children has a serious, chronic disease. So'm I. Anyway.

So when the original algae friends popped up again with news of hope, Mom jumped at the chance. I'd say this was about 6 months or a year into my diagnosis. Mom's friend mentioned a naturopathic MD based in GA. Apparently, he had successfully treated a Type I diabetic about my age. She wasn't CURED, per se, but she was no longer dependent on insulin. So effectively a Type II, diet controlled, but without the insulin resistance. Pretty cool, right? Well, better than Type I anyway.

Mom launched the idea to me, and my immediate reaction was "NO." I didn't have anything against alternative therapy (at the time), but I was still learning how to take care of myself on a day to day basis. I thought that adding herbal supplements and other random therapy would throw too many variables into my equation. How was I supposed to follow advice from two doctors when they didn't communicate and were operating from two completely different medical walks of life? Well, somehow she wore me down. I mean, what did we have to lose besides money and time, right? And it might help. There was nothing so disheartening to the newly diagnosed diabetic me like that hopeless feeling I got when I remembered the nurse in the ER saying that it was never going to go away. That this is a life sentence. And then my endo confirming that he can never cure me, only treat my symptoms. If that hopeless feeling would go away, I'd try it.

We made the ten hour drive down to GA. On the way I had the worst stomach cramps I have ever had in my life. I puked out the window, even. Awesome! I honestly think I was experiencing food poisoning from an IHOP caesar salad...still won't touch the damn things. The doctor said I had had a mild "gallbladder attack" due to an excess of gallstones. Errr...well, I'll let you know when my gallbladder conks out, but I haven't had any issues like that since. I'll just keep avoiding the caesar salads at IHOP, thanks.

At the first appointment, I learned that the method of diagnosis most heralded by the doctor is electrodermal stress analysis. In a nutshell, this is mapping acupuncture meridians to electric signals that are produced by your body to detect "inflammations" or "deficiencies." You sit there and hold a moistened metal rod in one hand. The doctor uses a metal probe hooked up to one of them there electrodermal machines (see link; I was diagnosed with the Omega AccuBase Platinum device). Then the doctor asks your body a question, and touches the metal probe to acupuncture points on your fingers and feet. These questions were anything from "What kind of medicine does she need?" to "What is her true biological age?" After the diagnosis sessions, I'd go get adjusted by a chiropractor and clear any "emotional pain" found by the electrodermal machine. Then the machine would be used again to determine what sorts of homeopathic tinctures and herbal treatments would best suit my ailments. The idea was that the body dredges up the thing that's wrong with it the most at any given moment, so treatment is a g r a d u a l process.

Predictably, my body always complained about stressful emotions, liver, pancreas, endocrine, and immune system issues. Once it even threw my lungs and my heart out there. I was always a little older than my biological age, and I always always always needed tons of pills and horrible-tasting liquids. I visited this doctor for two years. I received EDTA chelation therapy - as my initial diagnosis was heavy metal blockages in the main blood vessels leading to my pancreas - foot bath detoxification, lymphatic massages, and several chiropractic readjustments. I swallowed down countless detox shakes of grapefruit juice and olive oil to "cleanse my liver." My doctor convinced me to put off getting the insulin pump and give his methods a try. I did. I cut down my carbs to 15g or less per meal - usually less. I was on one shot of Lantus a day, 30 units, with Humalog to supplement if I overstepped my carb boundaries. My doctor told me not to treat lows with sugar, but with enzyme pills. This was his next explanation for my diabetes - overall body acidosis. The theory here is that sickness thrives in an acid environment; parasites, bacteria, etc. If I would just cut sugars and other "acidic" foods out of my diet, I would be cured. Oh, and I also had a couple of "miasms" (which are basically like genetic disease footprints passed down to you from your relatives). Nothing like being a 20 year old woman carrying around a bottle labelled "Syphilinium" to get rid of her syphilis miasm.

There were a few ocassions that really convinced me that this stuff was the real deal...I wish I could remember now, but it's fading a bit. One that I can recall was a seemingly random appearance of "Teeth" on the electrodermal analysis screening. What could my teeth have to do with diabetes? Well, let's ask the machine.

"There is a problem with the teeth that is affecting the diabetes?"
*machine bleeps yes*
"Are there fillings in the teeth?"
*machine bleeps yes*
"Are they mercury amalgam fillings?"
*machine bleeps yes*
"Are mercury vapors being released into the mouth and causing inflammation of the organs?"
*machine bleeps yes*

Amazingly (coincidentally) I had received my very first fillings ever just a few days prior to the appointment. Unless the doctor hired a private investigator on me, he was taking a pretty big chance making up the teeth thing. I come to find out through research later that metal fillings are a big deal with a lot of alternative practicioners - and I agree with them, mercury in your mouth is bad...but looking back on it it was a pretty cheap way to convince me that this machine was legitimate. Also the machine constantly harped on generational bad emotions passed to me through my mother's family. I guess this is digging out a lot of skeletons, but let's just say it sounded really plausible. And it was actually kind of fun to pull these "answers" almost out of thin air, out of my body - that unknown betrayer was finally being forced to fess up.

But isn't that what they always say about fortune tellers? Fun? Plausible? Generic? Obvious?

I guess what really began to make me feel fed up with everything was not just the huge amounts of travel and money that we were throwing into this therapy - with a total lack of results - was when my husband, then boyfriend, came to an appointment with me. He said he damn near cried and felt sick to his stomach when he saw what was happening. This is the guy who hates going to the doctor on general principle, but he hated it even more when he couldn't get scientific answers out of the doctor. He couldn't wait to get out of there, and we stopped talking about my treatments together.

The still, small voice inside of me began to whisper that I might be on very little insulin, but that was only because I wasn't eating much of anything to require insulin. And I couldn't ignore the fact that every time I walked out of that office I felt horribly flawed, horribly sick, and doomed, somehow. Like every move I made in my life was bad for me. Let's face it, it's hard to be healthy in the modern world. But what a weight I felt on my shoulders during that period of time. The crushing responsibility of my own health and my inability to control it. The long drives back to Virginia I spent laying down in the backseat, head in a book or anywhere else but in the bag of medicines my mother closely examined. I was always snappy and sad when talking about the "progress" (or regression) I had made. I felt like I was 75 years old after those visits and it took me a few days to recover. Healthy, huh?

After copious amounts of frustration on my part, mom heard from her friend again. Apparently there was this doctor in Chula Vista, CA, who had cured diabetics. We brought his name up to my doctor in GA, who brightened immediately and became excited. He highly recommended that I go see the doc in CA, they were pals who did lots of international seminars together. The CA doctor used a technique called "live cell therapy" in which he examines your blood using a big ole expensive microscope. Based on whatever he sees in your blood - parasites, plaque, Mickey Mouse - he sends you over the border to Tijuana, Mexico, to be treated at his hospital there. I endured two weeks of enzyme pills, enemas, green shakes, and constant IV treatments. I was injected with bovine stem cells at that hospital - but the whole time I was there I felt a sense of foreboding. I was too scared to think that this might actually help, and I was again feeling the huge weight of my negative destiny. The doctor had me cut back my insulin to practically nothing after I was treated with the shots "to see what would happen." In the meantime I read testimonials from former patients who were either no longer using insulin at all, or had cut back to 50% of their prior use. Hope hope hope. When the night doctor came in to examine me, read my night blood sugar readings, and heard that I was taking no insulin, he scoffed. "What does he think is going to happen?"

At the time I thought that guy was rude. Now I know he was right. My blood sugar levels hovered in the 300s and 400s for over a week, and eventually the doctor relented. I started the insulin up again, left Tijuana, went back to school. The much-lauded effects of the cell therapy never materialized. In fact, my blood sugars were uncharacteristically erratic - as in random HIGH highs - for a few weeks after I came home. My calls to the doctor were largely unanswered, unless I called several times a day.

After more than two years of travel to GA and CA, I finally told my endocrinologist what I had been doing. He got a pained look on his face, but as we were very close I think he prevented himself from flipping out completely. During that appointment we learned that I had antibodies for Hashimoto's thyroiditis. Had I, with the best of intentions and the highest of hopes, inadvertantly caused my immune system to backfire on me again? I don't have a thyroid issue yet, but the antibodies are a good indicator that it's going to happen. And again, my conventional doctor can do nothing for me but treat my symptoms. And the alternative doctor can only propose more and more cracked out therapies and tell me that that potato chip I'm eating is the entire reason for my body's inability to cope. Again, the weight of my doom on my shoulders. I hurt myself if I do this, I hurt myself if I do that. How do I keep from killing myself? It was just impossible.

The final straw came when I was traveling into DC for further chelation treatments prescribed by the naturopathic MD in GA. The travel down to GA was just too much at this point, so I was going into the city to a MD who specialized in allergy treatments. He also provided IV fluids w/ vitamins, etc, for his allergy patients. He happened to have the stuff that the naturopathic MD wanted me to get at the time. Anyway, some billing rigamarole happened that caused my mother a huge amount of stress. I said I wanted to call off all of the damn treatments right there. We were calling one of the naturopathic MD's associates in Leesburg, VA to try and sort the mess out and even as I was near tears on the phone with her, she was trying to pitch another treatment to me. She had been cured of Crohn's, she asserted! If I just got rid of those miasms....I don't even remember all of the details, just the huge feeling of being sick of feeling sick. SICK OF IT ALL.



Sigh.



I haven't gone back to GA since. I seriously doubt I will ever dabble in alternative therapies again. Did the doctor help me? Maybe. Did he hurt me? Maybe. What did I lose? Confidence, time, money. What did I gain? A healthy sense of skepticism. I've always wanted to assert myself as very open minded, and I still feel I am. We don't have all the answers. Doctors are certainly not gods - conventional or alternative. Should I feel bad about wanting to hope? No. That was the primary motivator in all of this - hope. It didn't pan out, and for a long time I was angry about it. I felt swindled and manipulated, plain and simple - my parents' pain and fear gobbled up as greedily as the dollars that fell out of their wallets. But I still can't convince myself that the people offering these treatments and information are operating with an evil purpose and that some of these treatments do not have a basis in truth. Some undoubtedly are motivated by the money, but others will swear over and over that it has helped them tremendously. And maybe these treatments are effective for their ailments...but it never helped my diabetes.

I'm sittin' back for now. I'm enjoying my (relative) good health. I'm fine-tuning my basal rates. I'm not stressing myself out about this stuff anymore. I'm still walking the open minded road, but I don't think I'll be taking any turns too quick. I hope that my parents - if they read this - don't feel like I'm nailing them for buying into these treatments. I think it's perfectly understandable and I still feel like there's great untapped potential in the arena of alternative therapy....but I don't have room in my life for another endless tail-chasing session, or for more self-doubt and worry. My conventional doctors said "In 5 more years..." and my alternative doctor said "With 5 more chelation treatments..."

As far as I see it, no one's got diabetes nipped in the bud yet, but there's still plenty of false hope to be peddled around. I guess it's human nature.

9 comments:

Scott K. Johnson said...

Wow - very interesting stuff!

Sounds like you came through it all with a very healthy attitude about it all, and some pretty fascinating experiences to talk about!

Minnesota Nice said...

Yes, I distinctly remember the blue-green algae. They advertised it all the time in Yoga Journal and Macrobiotics Today. I also recall if was very expensive.......sigh.....
As an on-again, off-again student of acupuncture, I tend to think that alternative treatments are best for maintaining health and constitutional vitality, not for treating acute conditions or being a substitute for responsible self-care.
People with chronic conditions are very vulnerable, and practitioners who take advantage of this are the lowest form of life.

TDavis said...

I'm pretty sure my grandmother has tried all the same doctors/medicine men/whatever the heck you wanna call them. She's diabetic too. She's always trying to tell me that I really need to go to this "foot doctor" (translation: some guy that swears he can heal anything by massaging certain areas of your feet) that she uses. I'll stick to my endo, thanks very much. He's a T1 too so thankfully, he knows his stuff. I must admit, though, that it's very tempting to try anything that promises a life free from this disease. *Sigh*

the reflux guy said...

It's quite commendable that you took the time to write about your experience, and any issues you might feel regarding embarrassment. It's an unfortunate situation that many in the "alternative" modalities often prey upon the hopes of people to be healthy.

Major Bedhead said...

Good grief, what a tale! I'm glad you came thru it and continued to take insulin while exploring alternative treatments. I think MN has it right - most alternative medicine is good for health maintenance and can't do much to cure a chronic condition.

I do think that we tend to put too much trust in Western medicine and that alternative treatments should be looked into more than they are right now. That said, some of the stuff you went thru sounds like snake oil treatments, especially the bit about miasms. That's just odd.

Thanks for sharing your story. It was really interesting to read.

cesnh said...

Found your blog this evening, it's great. You are an extremely bright young lady.
And...I'm a Radford '72 - a long, long time ago.

Kendra said...

Thanks everyone - "interesting" is definitely a diplomatic way to put it! :D

And cesnh, Radford was a fun town to visit when I lived in the New River Valley! I think it's kept a lot of the small town charm that the Blacksburg/Christiansburg area is really struggling to hold onto these days.

Alan Bequette said...

Kendra,

I'm sorry you had to go through what you went through trying to get some relief.

It's very clear in your description of your experiences the level of anger, frustration, disappointment, resignation and to some degree and an almost apathy to believing anything anymore.

Don't give up hope and trust that there is a commitment to your health that may not be present to you based on your experiences from the people providing the numerous treatments you've received.

It's unfortunate to hear about your experience with Dr. Hawver. My first visit with him was when my girlfriend and her two boys and I went on vacation. Being self employed, I know that stress will play a factor in our health. I had many diagnosis from conventional doctors in our area all conferring to some degree of "chronic fatigue syndrome", or "stress related insomnia and mental fatigue", etc, etc....It irritated me to no end, because they all had their "expert recommendation" of what medication to take.

Being a proponent of organics, natural and homeopathic treatments, needless to say, I was a bit frustrated especially after noticeable side effects from previous ingestion of other "safe medications" before. I don't take them any more.

At Bremen, Dr. Hawver's staff explained the procedure to me and Michelle had familiarized me with it as well. I was eventually diagnosed with Candida, which is a sugar based yeast infection. Now before anyone makes a comment about a guy having a yeast infection, let me tell you, I was the first to give a look and chuckle thinking to myself,"you have got be kidding me!"...a YEAST INFECTION!!!??? After explaining to me what Candida actually is in detail and how it impacts all of the systems in your body, and talking with Michelle, it made sense and so I did it. I was also given 2 IV treatments to help facilitate the detox process along with the foot bath to pull out toxins through my feet. The water was almost black!!!

After 3 days of "flu like" symptoms and a little irritability from the detox, I felt like a machine! Switching from strong acidic foods to a more alkaline based diet also helped speed the process up and keep it all in check.

I have never felt better in my life! I'm 44 years old, just got the highest health rating possible on my medical screening for a New York Life policy, and sleep better and am more rested alert and productive than I was 10 years ago! I'm still self employed and am more successful than I have been in the last 20 years!

Does the CSA work for everyone?...maybe not, but I look at it like this; if you catch the injury early, you can usually stop or at least maintain it to where it's manageable. Some illnesses unfortunately, are more severe because they're not caught early enough. Drastic situations sometimes call for drastic measures, and I believe part of those measures include a full spectrum of balanced actions.
Spiritual, mental physical, emotional, etc....
It's a process and consistency is paramount in any endeavor.

If ONE of these is out of balance, it can impact all the rest without us being aware OF the impact.

I wish you all the best Kendra, and pray that eventually over time, there will be a resolution to satisfy you and manage if not irradicate your diabetes.

Feel free to send a message back if you'd like.

Alan.

Kendra said...

Thanks for sharing your experience, Alan. As you alluded to, I suspect autoimmune disorders are tougher nuts to crack than yeast infections, for standard or alternative physicians. ;) It'll take a lot more than a foot bath to cure Type I diabetes, that's for sure. (My foot bath water was a charming puke brown shade.) I also agree that alternative medicine can be a good support system for people with tough-nut conditions...my post was definitely me trying to deal with the disappointment of a broken promise, or me trying to let go of what I perceived to be an unrealistic goal (a cure). Positive attitudes are always great, but at the end of the day I've found realism to be a greater comfort while I live with diabetes.

I am glad you are feeling so much better!