Moving Quickly

So much has been happening over the last few days that I hesitate to post because much of this feels in flux. There are some things that are beginning to be certain. The first is that Coleman's test results from Fry Labs in Arizona show organisms most likely Proteobactor and/or protozoa. Not all Lyme patients have them, but those who do often have neurologic symptoms. Although our Lyme panel from Germany has unofficially come back as "indeterminate" neither positive nor negative, it is rare that one would have the co-infections found in Arizona and not have Lyme.

The nurse practitioner puts it this way: The coccobacilli are co-infections with Lyme. The current Lyme infection is not the biggest player right now, but these infections sometimes competitively inhibit one another and when you treat the coccobacilli, other less active infections ie Lyme might emerge.

This is also one of the clearest descriptions I have found about co-infections:
There are other co-infections that complicate the diagnosis and signs and symptoms of Lyme Disease. These infections can also occur by themselves or in various combinations. For example, another tick-borne infection is caused by the intracellular protozoan Babesia, first described in domestic animals in Romania [8]. There are over 100 species of the genus Babesia, but most infections in humans in the United States are caused by Babesia microti and in Europe by Babesia divergens and B. bovis. This type of infection can occur as a co-infection with Borrelia (about 20% of cases of Lyme Disease have Borrelia plus Babesia infections).

And an interesting paragraph on Lyme itself:
Borrelia organisms are among the most malevolent bacteria known to humankind. They can evade antibiotic therapy; down-regulate the immune system; withstand very cold temperatures and “starvation”; change their shape to become more resistant or invisible to the immune system; invade cells and “hide” inside them, and can even “cloak” themselves by pulling their host’s tissue around them! (Sounds like a sci-fi story, but it’s all too true).

The bottom line is that once they invade the body, these bugs are hard to get rid of, sometimes even when they’re caught right away. So it stands to reason that for many patients longer antibiotic therapy is necessary and very often essential. And if the infection has become chronic, a multi-faceted approach including long term antibiotic therapy; gut clearance; immune modulation; homeopathics; chelation therapy and detoxification, is the only way these people will recover.

We still have a few results to see next week, they are equally as important.

Even with what we know now, the nurse practitioner feels that Coleman needs aggressive and prolonged IV treatment. Outside of injecting the antibiotics into his bloodstream, there are other treatments involved. These include supplements, oral antibiotics, potential oxygen therapy, neuropsychiatric testing and others. Our nurse works with several Lyme literate MDs in DC, Maryland and NY, but in her words, "if it were her child, she would be with none other but Dr. R (blogging is supposed to refrain from names) in Kansas City, MO". This clinic is pediatric and headed by an dedicated physician who treats Lyme, Chronic Fatigue and autoimmune disorders. She (gender slip) is also published in the area of PANDAS which Coleman suffered at the height of his illness. To boot, she is highly versed in the field of neurotoxins and mold and was quick to step in early and have us stop the Bicillin shots we started last week. She noted that those shots were mold based and should not be used on Coleman due to his mold illness.

How have I seen God's hand? At the top of the list was the fact that Dr. R was booked through the end of October, but when she heard about Coleman's condition, she cleared him in for August 18. Normally, she requires an initial two day visit with a return home, month wait and then a return for treatment. Because our nurse has done most of the testing the doc does, we will have our initial two day visit and start treatment on the fourth day. The third day would involve an in-patient hospitalization for an insertion of a PICC line for the meds. All the medicine is administered in the clinic and typically consists of two daily visits morning and afternoon. Our stay there could range from 1-3 months so I'm preparing on all fronts. Certainly there are many questions still and today alone I was on the phone with the docs office, the insurance company, the nurse, the social worker, etc.

On Monday I have a 2 hour call with the nurse and will get more test results and lots of answers.

We are beginning to arrange transportation and housing. The short wait will be valuable for that and for our work on Coleman's mental state. We have begun using meds to help with his anxiety as a first line approach for enabling him to leave the house and travel. Physically, I see a bit of improvement each day, which will help a great deal.

Although things are moving quickly, I have an over riding sense of peace and a confidence that we are on the right track for his treatment.

I will update early in the week, but for now wanted to answer some of the questions in my in box! Thanks for asking and thanks for caring.