May 262008

Meeting with the LLMD went pretty well. He said he was happy that my vision problems were not optic neuritis, but he did not go into why. I was not much in the mood for there is a better side of this then, but I need to ask at the next appointment.

We started by going over the MRI report, and discussing the visit with the neurologist. He agreed with me holding off on the Rebif, and definitely agreed with no to the steroids. He said that everyone who has come to him who previously had a MS diagnosis has gotten better. He added that there are definitely some people being treated for MS but have Lyme; but that is not really news.

The majority of the visit focused on adding IV Rocephin to the treatment mix. His ideal for the Rocephin is 2g twice a day for 4 days and then off for three days for six months. I did three months with a PICC line so six months can’t be that much worse. This will be in addition to the Minocin and the Flagyl that I am currently taking.

Since I see a doctor out of state the bigger issue was that I needed to get a local doctor to oversee my home heath, etc. My family practice doctor, the one who initially started running the tests for me, graciously agreed to oversee my local care.

To be continued …

Jul 312007

I developed a dry, hacking cough that would last a couple minutes after taking the Rocephin infusion (this started during the end of the Rocephin tenure which was a month ago). The cough got exponentially worse after starting Malarone (an anti-parasite targeting Babesia. I started Malarone a couple of weeks ago.) and would happen throughout the day. The coughing was continuing to grow worse as the days passed, and I grew concerned that the coughing was a side-effect of the Malarone. I was even more concerned that Malarone might be causing permanent damage, and I certainly don’t want the drugs adding to the Lyme damage, so I stopped for a couple of days until I could get a doctor consult. The cough got better during those couple of days, but was far from gone. It certainly was “proof” that the Malarone was impacting the cough. Today, after meeting with the doctor, he said the cough was a very common symptom of Babesia, and that people have the cough exactly as I described. I vaguely remember having a little cough (itchy thought with a dry cough) as a symptom of “Lyme”, but not nearly as bad as the present cough. The doctor said that the increased severity of co-infection symptoms is to be expected because the Lyme tends to take precedence over any other co-infections, and now that the Lyme has gotten better the co-infections (and their die-off?) can be felt and start to take precedence. Returning back to the Malarone today has returned the cough with a vengeance; making this the most irritating, though not the worst, symptom I have ever had. In all if this is a sign of improved Lyme, etc. than it is good, and worth the irritation.

Side Note: Very late, but I went and got blood drawn for another CD-57 so I should know next week whether the number has jumped significantly.

Jun 212007

Old news, but the latest “testing” after one week of antibiotics (with the caveat that I had started the Buhner protocol over a month ago which certainly helped significantly – I’ll write about that later) is that I am making significant progress. My spleen and liver are almost back to normal size. Most significantly I can stand with feet together and eyes closed indefinitely without losing my balance. Before treatment I couldn’t stand more than about a second in that position before toppling. Additionally, I can now walk toe-to-toe without falling.

I had one day where I felt really good, and back to normal. Most days I just feel drained and blah. Most of the problems have been mental with fatigue, etc. I suspect there is a limit to the neurological issues since Rocephin does not cross the blood-brain barrier very well, and will get worse with a new antibiotic. There has been a recent resurfacing of some joint problems in my foot. I assume that this is related to Lyme die-off in that area.


Jun 062007

Image of the "PICC" line in left arm
Certainly long overdue the treatment has now begun, and while I may not find IV antibiotics the ideal it is how we are proceeding for now. A “PICC” line was inserted, but only 25cm worth (so not a true PICC line that goes almost to the heart), and so the line ends about at my shoulder. The line didn’t hurt going in, but ripping that tape off when they change the dressing does hurt (I should have shaved my arm first!). The first round of antibiotics is 2g of Rocephin. The doctor said he modulates the antibiotic about every two weeks. I get to go home with 6 days worth, and on the seventh day I have to go back for a dressing change and then to restock my supply. I don’t really know what to expect as far as Herx reactions, but so far I feel fine (but it is still pretty early in the treatment).