Sunday, January 18, 2009

Picking up the Lyme Story

So, H was taking oral antibiotics, specifically Ceftin (tm), and later Flagil (tm), and seemed to be fairly stable for a period of time on the Ceftin, but took a turn for the worse on the Flagil, so we stopped that pretty quickly. Along with this, there's lots of digestive issues happening so she had to take a lot of acidophilous to help that. At this point, things seemed to be progressing very slowly and the "milestones" were few and far between in terms of what we noticed on a day to day or even week to week basis.

In addition to the clinical diagnosis of Lyme, Dr. Phillips also tested for "co-infections" to lyme that include Bartonella, Babesia, Chlamydia Pneumonia and I think a few others. She tested positive for the Bartonella and the CP. Apparently the ticks that carry Lyme often also carry these things and since Lyme is so difficult to diagnose for find, that when you have any of these common co-infections, then is more likely that you have a Lyme infection also.

For those of you that don't know, a "clinical diagnosis" is a diagnosis that takes into account symptoms and other factors vs. just pure test results. The other diagnosis, I believe is called a definitive diagnosis and one that is in direct/pure compliance to CDC or FDA standards based on lab results. So, a clinical diagnosis gives Doctors a much greater ability to treat diseases because they don't have to comply to the stricter guidelines and can sort of "self interpret" your condition according to their own thoughts and historical findings.

I've said it plenty of times and I doubt that most doctors disagree with me. They are definitely practicing on you, especially in a case like this where there is no known cure or really any decent treatment. Medicine has come a long way in terms of treating things that they have "figured out" but in this realm that we are in, I would say that nobody has "gone pro."

Going back a bit to a whole saga that preceded the Connecticut trip and bolstered our view that Lyme was the culprit in Heidi's case. H had heard of a "live blood" analysis where someone takes a powerful microscope and looks at your blood immediately when it is alive and over a period of time searching for spirochetes that are the actual Lyme bacteria in your blood. This is one of the highly questionable tests for Lyme that I would warn you about if you are reading this for the purposes of figuring out your own situation.

We went to a clinic in Florence CO, where they practice homeopathy, naturopathy, massage, acupuncture and seemingly all manner of "fringe medicine" which are interesting to say the least. Some of this medicine has been practiced for much longer than "western medicine" and certainly has helped lots of people over the years.

In my opinion, a lot of it has to do with the healing power of the mind and a belief that something is helping and therefore it does. The key there is that you have to believe. In science, this is known as the placebo effect, and is well documented. I'm sure that there are also lots of naturally remedies that work, primarily because a lot of prescription medicine are either based on are are made up of refined natural materials that come from plants and animals from around the globe. Natural "supplements" can actually be very powerful medicines that are not only real, but can be really dangerous if they are not respected and taken carefully.

When I say "warn about" I mean that this test specifically put us on a track that we were pretty sure that H had a Lyme infection and went as hard as we could after it. The problem is that they are looking for spirochetes and mis-identifying them as "squiggly things" that come out of your red blood cells (RBC's) as they are dying. We got a recording of this activity and sent it off to a few people to look at. One Hematologist in England disagreed and identified that the "squiggly things" were not spirochetes but rather fibers that RBC's send out when they are dying as part of a natural clotting mechanism where the fibers are essentially reaching out to other cells so they can combine together and clot effectively. It is fascinating to see this happening, but it is more of a science show than a diagnostic indicator of Lyme disease.

In any case, they drew our blood and then looked at it live, and again periodically over the next four hours as the blood cells died. One thing that is valuable about this test is that they also look in your blood for clues to various conditions, by observing sizes, shapes and numbers of various blood cells as well as anything else floating (or swimming as the case might be) around in your plasma.

Specifically, if they know what they are looking for, they can identify digestive problems, infections, heavy metals, and probably several other things. The key here is that they really need to know what they are looking for. Timing is probably critical, and people's blood certainly coagulates at different rates, etc. Either way from what we were told and from the research we found "on the web" it seemed like the blood we saw on the recordings had issues, and Heidi's blood seemed to have more of these "squiggly things" than mine did. This is one of the primary reasons that we went out to CT to see Dr. Phillips after a referral from a friend of my mom's that said he was open to alternative ideas about Lyme and had helped several people, primarily with MS symptoms "get out of wheelchairs" after treating them for a chronic lyme disease infection.

During the trip to CT, we spent a night in NYC at some friends house (Thanks again J&B) and also caught up with another friend and then some of H's family in CT. A great dinner with good friends in Harlem, a chance to spend quality time with friends, a dinner with cousins rarely seen, a walk in the beautiful, crazy busy city. These are the times you have to appreciate, even if you don't know that time is short. It's almost like you should live your life KNOWING time is short and giving each day a chance to prove you wrong. Though we were on a trip with medical agendas and consequences, enjoy we did.

You sort of measure the progression of this disease in terms of "things you can't do that you previously could, or things that you have to do that you never used to." In this category, we went to MOMA in Manhattan to see a cool exhibit and needed to check out a wheelchair for H about half way our walk around the museum. This was one of those depressing and distressing moments because she just got to a point where she could not walk around any more in the museum. It wasn't like we could make it back to the car or anything...we just needed a wheelchair and that was that. Luckily for us, they have them available for use there and it was not a problem to secure one. It was just kinda scary.
That's it for now...
What's next: The first Hawaii trip...a little lightness vs this medical stuff.

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