Lyme Files: Relapse

I endured five relapses. That means, five times a treatment seemed to work and then I got sick again. These parasites go cystic, the hard protein balls which protect them from any attack. It means they are not attacking the body or creating any toxins - but then they come out again.

After I got through the last the last relapse - I had a long talk with myself and decided if the babesiosis came back again, I would choose a more palliative care. There are people with tick-borne illnesses who have gone longer than me with relapse and infection, I don't know how they do it. I just felt I had lost so much and if I could function with the infection it would maybe let me get on with some type of life more than forever being choking down pills and herxing.

I could live for a while on this but it would be a life of managing the systems knowing it would ultimately kill me.

 This is what that looks like - these are posts from the notes I had been keeping:

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March 17 2008:

both my parasites are back and they have infected my brain again leading me to have worser-than-normal memory issues, missing time (aka black-outs), fatigue, pain and overall unwellness. Both are resistant to the 15 pill-a-day treatment I am on so, we’re stopping treatment.

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April 24 2008:

After a 10 hour stay at the doctor's office. . .

The parasites have gone cystic. This means, they have encased themselves in thick walls of protein that are very hard to break down and are floating around. Good news, I suppose, is this is a sort-a remission but they can live like this well after I am actually dead and reemerge at anytime. I am on one new medication to get rid of it.

They can cause problems. .as any foreign body bouncing around the system can.

I still have several "troubling" neurological systems (like randomly falling over and not remember anything and having a headache) so the doctor wants to do some more brain scans to see exactly where the lacerations are. If it's anywhere near the central brain, that's another round of treatments/therapy that will be needed.

My heart is beating fine, I had an EKG, it's just beating slower than normal which is. . .what it is. I always said I was a calm person.

I still have fatigue and pain so I am being pulled off all but three medications to see what issues are being caused as side-effects of the medication and what is related to damage/sickness. The doc would like to do a nerve test to test my pain receptors.

My blood work is looking good, other than my body storing anything I eat as fat. I am going with a strong 20lbs weight gain from my normal weight. I have a nice, fat belly. I still have to take it easy because too much "stress" will throw everything off.

The real issue is not a lot of research exists on what I am going through and Lyme co-infections like this in general. Most discussions start with "An autopsy on rats showed. . ."

By the way, two of the three meds - one is for tuberculosis the other is for leprosy. I walk into CVS coughing and scratching just to see the look on the pharmacist's face.
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At this point, Dr. Burke wanted to put in another PICC.  But my veins were starting to collapse and scar. What most people don't realize is the infection was also causing my capillaries to burst and weakening structures in my body. Getting a PICC in might not have worked,

He tried to put in a port so I could get some stuff in my easier than getting pricked every time. It was a fail. He didn't fail because he wasn't good at it - it was my body's inability to handle it. This meant my new IV treatments would be administered in the doctor's office with a normal IV.

Each spot you see is where 5 inches of needle was under my skin and not a single vein. . .These are on both sides of both my arms.