Round 3 of Minocycline and Low Iron Discovery

After 2 attempts at treating my Bartonella with Minocycline and having horrible herxes with it, today, May 26th, I start back very slowly.

My schedule looks like this:

May 26th, Mon, start with a 50mg tab once, then Wednesday, then Friday. That's it for this week.

June 2nd, take a 50mg once daily everyday.

June 9th, take one 50mg tab twice daily.

And that's it this time! The most I will take is 100mg a day. My LLMD feels that this is probably all I can handle for now, and he will watch me closely and if he feels I can get to 200mg down the road then that's what the goal is eventually but not now.

Another new trial I am having is the recent discovery of my dangerously low hemoglobin and iron and shrinking red blood cells. On March 19th I had my blood drawn and when my LLMD received those results everything looked fine...or so we thought!

Then on May 19th I had another blood draw which show my hemoglobin was at a 8.2 and my iron an 18, and shrinking red blood cells.
A normal hemoglobin is 12-15 and iron levels should be anywhere between 50-175.

My LLMD went back to the Mar 19th results to compare the results only to find out the lab had only sent half of the results so he never saw my CBC which would have shown that back in March my hemoglobin was at 9.3. So since March to May I have lost a unit of blood. Not good! He was furious as he could have been treating me all this time.

So now I am on Iron pills and on a journey of tests to make sure I am not bleeding internally somewhere. I have an OBGYN appt for June 19th, then we shall go from there.

I did find out info about low hemoglobin and low iron and shrinking red blood cells. My dear friend whose granddaughter suffers Lyme, they shared with her that Bartonella and other co infections, Babesia, live in your red blood cells and actually feed on your iron levels! UGH! Go figure. She said I needed to be careful to not over do iron stuff as I could actually be feeding the bacteria. My LLMD has suspicions of Babesia, mainly because of my recent test results.

Here's some info from other websites about this.

A New Tick Borne-Parasite That Invades Red Blood Cells-Babseiosis

Article describing how Bartonella burrows in red blood cells

Babesia and Low Hemoglobin

So this is the latest in my Lyme journey and I am hoping for better results in May when I do my next blood draw.

For now I will start the Mino and let's start killing this bug!

Minocycline Herx yet Again!

You can read my original Minocycline herx story to better understand this post.

I share this so that folks who are starting their treatments can get an idea of what others have gone through and what reactions they may have experienced. Everyone is different but some herxing is the same so it's very helpful to read others testimonies.

 So here we are again.....same story, not quiet as painful as the last time but herxing once again from Mino.

Here's the run down of what happened.

I shared here, about the change in treatment as we realized I was battling a co infection called Bartonella. This is when I was introduced to Minocycline.

Since I herxed really bad the last time with the Mino, my LLMD wanted me to start back slowly after our trip to Texas. So on April 23rd I took my first 50mg dose. I did 50mg for 4 days, then 100mg for 7 days then last Sunday I did 200mg increase, which was the last increase.  Now I was doing pretty good even on the 100mg, not realizing the restlessness and agitation I was feeling all along was indeed a herx. I just was dealing with it hoping it would go away. I felt so fidgety and it was hard to sit still sometimes.

Monday I was fine, even drove to NH and did an all day shopping trip. But by night I felt woozy in the head.

Tuesday felt fine during the day, drove to piano lessons, but by evening I felt woozy in the head.

Wednesday daytime, felt fine, but by 5pm I was spacing out. I was groggy feeling, lightheaded, trouble moving and speaking. No pain involved but just almost drunk feeling. Was so hard to stay awake and attentive for our Wednesday night prayer meeting we hold at our house. Felt bad for my friends that they had to see me like this. Nausea started at this time.

Thursday again felt fine during the day except for nausea, felt like morning sickness, but by evening I was spacey again and groggy and sleepy, pressure in my left side and my left side of my face started feeling that parathesia (paralyzed droopy sensation) feeling. Nausea was horrible.

Friday morning I woke up exhausted as all night I was so sick to my stomach it was hard to sleep. So I called my LLMD. He immediately said "get off the mino"...again....he said the agitation is another herx reaction and the spacing out is also a herx. The nausea is also the medication.

So the plan is to give myself time to heal my tummy...then he wants me to go back on mino but only 50mg twice a day. So I have to break open the capsule and divide the powder. He said he thinks this is the only amount my body will be able to handle until more of the bacteria is killed off.

He believes in time, after we kill more of the bacteria off, that I might be able to handle a higher dosage but for now he is keeping things at a low dosage because of this herxing again.

Herxing is a clear sign that the bacteria are being killed off, so in a sense it is good, however too much herxing can lower your immune system because it takes such a toll on my body. 

So Round 3 of Minocycline for me! Yay! NOT!

Battling one day at a time! Looking to the Lord for daily strength and endurance, with all joy knowing He is walking with me through all of this. 

11 May you be strengthened with all power, according to his glorious might, for all endurance and patience with joy, Colossians 1:11