Thursday, May 23, 2013

MTHFR - progress

So, the naturalpathic doctor I was working with was a little disappointed that my symptoms didn't show immediate, drastic improvement.

I wasn't surprised.

I knew that my diet wasn't perfect going in, but also knew that it was fairly well balanced and adding a few supplements like probiotics and mutlivitamins has been tried before. I figured this was going to take some time and that if it helped, it was going to help a little, after a while of following it.

She was so disappointed, that she said that I should wait to reach out to her after things improve on their own (wtf?).

My goal was that she helped me 'heal the gut' which didn't happen 100%, but certainly was given the ol' college try. And that once she had completed that I was going to try to see about doing some travel to see an MTHFR specialist (none in Iowa nor any immediately surrounding states).

So, I figured... ok. I can continue the treatment she started me on as-is and might as well start looking for the MTHFR specialist so I can see about setting up an appointment, maybe this fall. I was thinking about screening both of my sons (both are having some health issues that remarkably seem like issues I experienced at their age and might be remotely connected to MTHFR). So, after digging through several web sites and referrals, I decided to call a doctor in Colorado... my future daughter-in-law has been wanting to go to Colorado and they are talking about a wedding out there... but I figured I'd find out a good time to start seeing him and see if he thought I ought to screen the boys before hand.

They got me a skype appointment with the doctor for the following day. I almost fell out of my chair. I just didn't expect that he would consider a first appointment on-line without an initial visit in office.

He gave me some changes to make to my routine and told me some MTHFR-specific recommendations for updates to my supplementation routine.

It took two weeks. Two weeks before I saw unbelievably dramatic improvement in my health circumstances. My son asked me last night what I was doing sitting in the living room watching tv. Why wasn't I laying down in bed? Because I can. I'm doing my best not to overdo things. And I had a little bit of an issue this morning because due to dental issues I'm currently on a liquid diet and it does appear that my supplements need FOOD in the tummy not just liquids (mashed potatoes helped).

I am amazed. Absolutely amazed.

I have taken a small break from the list of supplements from the naturalpathic doctor though my intention is to add them back to the routine. I'm just hesitant to do so while I'm on a liquid diet. I still have more supplement and routine changes to make to become fully compliant with his recommendations (and you can believe I fully intend to do just that).  But so far, all I've done is increased my methyl guard plus from Thorne up to five a day (to save money and use up the supply I have) - which will get replaced with another source next month so I can take fewer pills. Added liquid D3. And just yesterday I started NAC - am holding off to see if NAC bothers me every day or if it was just the lack of food in my tummy this morning that threw me off.

Now, admittedly... this might just be another remission of symptoms (like last summer). It is far too soon to determine that it's a cure. I'm thinking a couple of years of remission will tell me that it is more than just a remission... but that doesn't mean I'm not enjoying it.

Here's some ideas of my symptoms before and after treatment - and you tell me that you don't see something worth being happy about! (Scale is from 0 to 10 - 0 is there is no symptom and 10 is at the point where I wonder why I'm not in the hospital).


Soul-crushing, bone deep fatigue - was an 8, now a 1
Leg pain - between a 2 and a 4, now a 0
Upper arm/chest pain - up to a 6, now a 0
Wrist pain - 6, now a 2 (still dealing with the vestiges of a tendonitis flare)
Upper back pain - 2 (hasn't been that bad, post-gall bladder removal), now a 0
Headache - 6, now a 0
Waking up feeling refreshed - was 5, now a 2 (has been 0 a couple of times)
Diarhhea - 5 (9 days out of 10), 0 for seven days now
Bad mood, sad, hopeless - was 6, now a 0
Numbness/tingling on right side - was a 3, now 0
Foggy brain - was 6, now a 0
Inability to focus on a given task - was 8, now 2
Desire for Isolation - was 8, now 4 (but that's actually related to dental issue - need to get that resolved)
Dizziness/balance issues - was 6, now 1 (which might be related to liquid diet more than anything else)

I'm just starting week three of the new treatments and I can only hope and dream for more resolution to my health issues.


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.

Friday, May 03, 2013

Best laid plans get trampled again

So, I thought I had it ALL figured out. Major dental work - huge bill - but not urgent. I could put away $2500 in 2013 pre-tax using FSA dollars. I could put away $2500 in 2014 pre-tax using FSA dollars. And I could put away several thousand pre-tax dollars with my HSA plan.

In January of 2014, I could still access 100% of my 2013 FSA, and 100% of 2014 FSA and as much HSA funds as I needed to for the balance and leave the remaining funds for other, future health care.

Yeah. All planned out.

Until last month - when four of my molars started to bother me. Bother me a lot. Like hide the plyers from me because I might not wait for an oral surgeon to get the blasted things out.

So, I procrastinated. I put ice on it. I bought more maximum strength Ambusol. I started taking Ibuprofen like it was candy.

After three weeks of misery, I broke down and went to the dentist. I still had $2500 in my 2013 FSA. And I had another $500 in my HSA. And I had $1500 between emergency savings and checking account. Well, I had that much. I don't anymore. It still wasn't enough. BUT I managed to get another $2000 through a credit agency. 0% interest for 12 months (you can bet it will be payed off long before then).

Ok - it's settled. I paid the dentist. THEN I got told it would take two weeks to get an appointment with the oral surgeon. Seriously? OMG I AM IN AGONY. TWO WEEKS? GAH. Ok. I think I can survive that long. I've survived this long on ibuprofen, ambusol and ice. What's two more weeks?

ONLY then I got a call back that they didn't think they could fit me in within two weeks - it would be six weeks. Oh HELL no. That was NOT going to fly.  Oh, and by the way, we'll have to do some additional work - and it'll be another $800. sigh.

So, I went back in and had a discussion. I mentioned the pain level. I mentioned my concern about waiting six weeks. Before I got to the point of asking for a FULL refund and finding another dentist, they got on the phone with the oral surgeon on my behalf and threatened him with taking my surgery to someone else. Suddenly there was an opening in two weeks. TAKE IT.

For the $800 I don't have? They are willing to let me bring it in after payday the day of the surgery. That'll do. That'll do.

Now, if I could just hide under the covers and act like these next two weeks aren't happening to me, that would help. The surgery is going to be pretty bad and recovery is rough. But it won't be nearly the kind of pain I'm dealing with right now... I'll be really glad when it's over and done with and I'm starting to heal.