Monday, January 26, 2009

PIcking up in late 2007, day to day battle with ALS

As I've mentioned we always suspected that there was something wrong with the blood that H received in her massive amounts of transfusions related to the story that started this blog, and we think, started this whole mess. Thus far I've talked about our early research and subsequent treatments for Lyme disease and other co-infections in those early days.

During this whole period, there were other things we were trying, but we found out about a Doc in Colorado Springs that at "cured" himself after being diagnosed with ALS and being wheelchair bound because he suspected he had, and treated himself for, Lyme disease and it's co-infections with IV antibiotics. By the time we heard about this, he was not accepting any new patients and within a couple of weeks he closed down a clinic he had opened to treat others with MND (Motor Neuron Disease). We didn't know how many people he treated or how much success he had with those treatments, but any single positive case was a hopeful one as far as we were concerned, so as fast as the roller coaster went up when we heard about him, it came down when we found out he'd closed for "business." We heard that his PA was going to open a clinic and treat people as he did, but she was not yet ready to accept any patients. This was in the fall of 07. I'll re-visit this whole story later.

At this point, H was having trouble walking and needed support, so I would walk backwards in front of her and she would hold on to my arms and we could go short distances of 50 feet or less. We were starting to wonder how we were going to deal with the stairs in our house, as we were taking one step at a time and it was getting scary for her. I knew the time was near that she would not be able to manage the stairs so I had been working out and carrying 90lbs of dumbbells up and down the stairs every time I went up and down. Every once in a while, we I would carry her up if she were tired and managed that ok. There's definitely a difference between dumbbells with nice handles and H with no handles and a slight weight differential, but it was fine. We managed.

We had a huge Thanksgiving dinner that year with lots of family in town and a big dinner at Mom and Jack's place. It was sort of melancholy. We gave thanks for a lot of things, of course, but in that situation there's sort of this "elephant in the room" where even while you are giving thanks for the good things in your life, you wonder why you are holding some of the cards you have been dealt.

It is around this time that we decided as a family to pull the girls out of school in January and go to Hawaii for a couple of months to spend time as a family and enjoy some life experiences together outside of our little microcosm in HR. Part of the hope too was that the stress of everyday life and our situation was contributing to H's condition and that we could take that away while we searched for alternative cures or treatments.

It was about this time that some people had taken up Lithium as a treatment for ALS, largely based on some anecdotal success stories coming out of Europe, so we secured for her a prescription for that and she started taking it shortly before we left for our trip. There was this amazing video of a guy in Finland (I think) that had been wheelchair bound (supposedly) that obviously had fairly advanced bulbar onset of ALS or some MND (meaning he had a hard time talking and swallowing) and he was riding his bike and running 30 yards or so on YouTube. This little demonstration gave us hope that Lithium was the answer (once again) and the roller coaster went up. This hope, combined with the planning of our big trip had us in a phase of relative euphoria and happiness as we busied ourselves with the details of the trip.

Everything seemed to come together perfectly as we planned our stay. I won't go into detail about that as I blogged often on that trip here: and here: but we were there for a tremendous adventure from January 20th to March 25th of 2008. I'm thankful that I'm in the Internet business and a company owner, which afforded me the freedom to do that. I'm also thankful to the whole team at Thunderbolt Group ( that helped run the business during my absence and dealt with me being 4 hours behind them and "out of pocket" much of the time.

The Lithium trial was really a non-scientific clinical trial that was being "self managed" online by a group on I believe about 200 people had enlisted to take the drug and report their progress or lack thereof on the website. It was very well organized and really an amazing effort. The departure for us was that we had not gone down the path of "treating ALS" before as we were not accepting that as a diagnosis because of the blood issues. But we felt that it was worth it to pursue this path because Lithium is a known drug, has been used for a long time and is relatively safe as long as your liver function is monitored with regularity.

One of the downsides of the Lithium was that it caused GI issues for H and with her declining mobility, well, getting around quickly was becoming a problem and caused its share of stressful situations on our trip. In the end, we did not see any efficacy as a result of the Lithium, so H discontinued use of it after about 2.5 months of use. Later, it was found in the study that it really didn't help anyone, or so it seemed....Another bottom of the roller coaster for us.

During and before the Hawaii trip, Heidi was on a number of other supplements, the combination of which seemed to upset her digestive system, so there were also a number of supplements to try and counteract those issues. She was literally taking full handfulls of pills every day and had them organized into am/noon/pm doses in a huge plastic sectioned box. It was unbelieveable. I can't even begin to describe all the supplements, but again, none of them seemed to help, so it doesn't really seem to be worth the effort to go through that whole "rigamarole."

She had done a long "consult" with a nutritionist in the Bay Area for about $275.00 that ordered a bunch of blood tests (which probably cost $1500) and got all her other labs and therefore went on many of these supplements. This seemed to be a complete waste of time and a lot of money as well as huge boxes of these supplements showed up in the mail every week, not to mention the difficulty in managing these doses and different volumes of pills, liquids, droppers and powders.

Maybe I'll get motivated to give more detail on all that stuff. If anyone reads this and wants details...let me know via a comment on the blog. All it really seemed to do was create havoc in H's digestive tract.

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