Posted on Jan 24, 2016 in Blog |

BlipI saw my latest blood smear last week.  It was not what we expected.  I thought I had beaten the Bartonella and Protomyxzoa Rheumatica and the plan was to next start attacking the Babesia.  The plan has now changed.

I go back into full treatment late next week after the “after effects” of my latest vacation wear off.  I will start back on anti-malarial meds.

Once I get the routine down for those meds, and once we get the blood work PCR confirmation from Galaxy Diagnostics, I will then start back into Bartonella treatment.

I don’t know how long this protocol will be.  I didn’t ask.

Dr. M reminded me that when I went through treatment in 2009, the treatment protocol was version 1.0.  Now, he is on version 8.0 or so.  It will be better this time around.  He is also adding two new drugs for me to hopefully reduce the side effects of the medications.  These will hopefully help with pain, mood, anxiety, and depression.

I’m also still getting Toradol (NOT Tramadol) injections each time I go up there.  These are anti-inflammatory only but help ease my lower back pain tremendously, temporarily (24 hours).  He has been able to reduce my pain considerably.

I know Babesia is considered incurable.  But if anyone can cure me, I believe it to be Dr. M.  No one else is even trying.  He has some amazing research done and some incredible theories that I am willing to help him test out.

The Bartonella was supposedly incurable as well back in the early 2000s, but Dr. M has put patients in remission for five and more years.  I thought I was cured.  I was in remission for 4.5 years.  So, I will go through treatment again and plan for a much longer remission next time.

The Protomyxzoa Rheumatica is a huge unknown.  It was discovered by Dr. Steven Fry in 2011.  Dr. Fry and Dr. M are the only two physicians I know of who are researching a treatment for it. Imagine finding a certain cancer less than five years ago and how long it would take to find a cure for it. I am very lucky.

The past six years have changed my life dramatically, but I remain grateful for the treatment I have been able to receive.  I know without it, I would not have been alive today. I do not say this lightly.

Many of you have asked specifically about my symptoms. My symptoms are overall better than they were six years ago.  The peripheral neuropathy in my feet is worse and thus my balance is worse.  My handwriting is basically illegible even to my own eye.  The twitching and tremors remain but have not worsened in the past six months.  The lower back pain is better – I haven’t been in physical therapy for about six months now. The joint pain is the same. The brain fog, cognitive impairment, processing skills are still poor at times, but less frequently than six years ago.  The memory loss is still significant. And the fatigue is still all consuming at times – that is probably my greatest frustration at this point.

No, I am not happy. Yes, I am disappointed. But I know this is not starting over. It’s just a blip in the trend. It happens. This treatment protocol will be easier, better, faster, more effective. I will keep you posted.