Saturday, May 04, 2013

Frustrated with new doctor - thinking about switching again

My new doctor didn't know anything about MTHFR. But, she says she's willing to learn. She then went out and learned 10-year old information. When she recommended that I start taking folic acid and cyanocobalamin... I refused. I told her she HAD to find an alternative that contains L5methyl Folate and methylcobalamin or I wasn't going to take it. We had a bit of a discussion. But she did find a source that provided those two vitamins in a form that I could take.

But, I got away feeling that she thought I was just being difficult. I tried to explain to her the most recent research and provide links AGAIN to her about the most recent treatments and studies around how MTHFR affects individuals.

She realizes that the MTHFR is an obstacle to my getting healthy. But I"m under the impression that she's not seeing that there's a treatment for it. I know for a fact, that she prefers treatment that has proven studies. The problem is that MTHFR is so individualized and requires individualized treatment that it will never be a good candidate for studies to prove that xyz treatment is affective for it. Besides, treatment plans for it are so brand new that they are very much in the realm of experimental. It's 100% supplements,  but supplements designed to support the process that isn't getting supported properly due to the genetic issues.

So, the first month on her treatment plan and I had a few things come up. 1) I took a terrible fall and hurt my ankle, wrists, etc. 2) I had a bad reaction to the magnesium she had me take even though I told her that I had trouble taking it - I took it anyway, but stopped immediately... she was irritated that I didn't tell her immediately I had an issue with it - which wasn't true. I told her before we ordered it that I might not be able to tolerate it. She had me order it 3 weeks before I was due to start it (so it could save shipping costs). And I told her within 8 hours that the symptoms had started. And she's irritated with me? Because, why? 3) I started to have dizzy spells. Dizzy spells have come and gone through my health issues. They are unlikely the result of my new supplements, it's just a sign of my worsening condition. I expected it. It was just a matter of time since I knew I was already on a down-hill slide before we started treatment. 4) I had an allergic reaction to one of the gluten-free alternatives thanks to trying to go gluten free. It happens.

So, now, I get the distinct impression that she was unhappy that I was about the same after one month worth of treatment. I wasn't unhappy with the progress. It's my impression that I've been sick for years. One month of basic treatment of my symptoms isn't going to change the world. I believe that my underlying cause for all of my symptoms comes back to untreated MTHFR. My goal was to use her to help me heal my gut, which is a good preliminary step before addressing MTHFR. She's on the other hand, saying things like - well. Let's hold back. Seriously?

Grrrrr

One of my concerns with working with her is that she's still not quite on board with trying to understand MTHFR.  So a couple of weeks ago, I was thinking that I would stick with her for a few months until I could work out an opportunity to travel 1000 miles or so to the nearest MTHFR specialist. I went looking for recommendations. And lo and behold. I found one in Colorado who comes highly recommended.

I give him a call thinking I might verify that this would be something where we could possibly have a first appointment in person and then perhaps follow up appointments via skype. Heck, he's willing to do almost 100% of it via Skype. And in fact, had an opening this week if I wanted to get started.

He 'GETS' MTHFR. He's been treating people with chronic pain, chronic fatigue and having great results with his treatments. He also knows a lot about Thyroid - more than either my doctor, or my son's pediatrition. My thyroid counts are frequently 'off' but then dismissed as not being significant by my doctor. With little to know explanation about what they actually tested or what ranges they were tested against. And my understanding is that some people with thyroid issues have gotten help when the regular doctors were dismissing their issues. My 9 yr old son recently had a thyroid test because he was feeling 'off' and 'unwell'. It came back high - and the doctor, again, dismissed it. Saying that high thyroid wouldn't account for his symptoms (which sounds like bs to me). Again, no information about what exactly got tested,k let alone, what ranges it was tested against. No explanation why it might be high or what that might do for him.

So, I think I'm going to switch from the Naturalpathic doctor who is irritating me and switch to this MD who is a specialist in integrative health. I'm thinking this fall that we will probably head out to Colorado to do an in-person consult. In preparation, I think it's time to break down and order the genetic testing for the boys to see just how much of the gunky MTHFR they managed to inherit and get them some treatment.

At this point, I'm thinking that once I've got my finances back under control that we're going to proceed pretty strongly down this new path. I do need to regroup a bit first, thanks to the outrageous costs of dental work - sigh. But, it won't keep me down for long.

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