We had to head to MA to my dear friends funeral service, we were also Live streaming the service for the family so I forced myself up and headed over. It was an 3 hour drive there and back. Agonizing!
The TMJ pain was so severe I took Excerderine and Advil out of desperation. it did nothing!
Sunday morning the TMJ pain was GONE! Just like that! But the intense pressure in my head had escalated and the dizziness was overwhelming.
I decided to look up side effects to the Minocycline and I did find that there is a condition called IIH (idiopathic intracranial hypertension) and Minocycline was one of the drugs that had caused this in 2% of folks. But my pharmacists paperwork that came with my meds had nothing about this condition.
So I did the no no...I believed what I read online and stopped taking the Minocycline and I waited till Monday morning to call my doctor. So I am learning how to be a good Lyme patient.....my LLMD is so kind and patient with me. When he called me Monday evening the first thing he did was scold me for not calling him on Sunday morning. Then he scolded me for believing the internet and not the pharmacists paperwork. He joked and said we know if Donna doesn't go to church on Sunday then we know to call 911...he's funny.
He said this was a classic herx reaction, the TMJ pain that disappeared as suddenly as it came on was herxing, then the inflammation has no where else to go but in my head and that's why I felt such pressure in my head.
So he changed my schedule for the medication. Instead of starting with the Minocycline, tomorrow I start the Rifampin, then when I get back from TX I will start the Mino again and see how I do. I'm scared to try it again but he's hoping that the Rifampin will start killing off the bug so next time I won't get such a violent herx. Here's hoping!
I did update my Daily Journal with all this. I even put pictures. Don't scream...I look terrible! lol!
So lessons learned:
1. Do not change what the doctor has instructed until you talk to your doctor.
2. Google can give us way too much info that doesn't apply to us even though it makes sense.
3. Pharmacists paperwork is not to be thrown away and never read. READ it to find out side effects etc. If it's not listed on there don't assume Google will be the next step.
4. My LLMD is on call 24/7! I am not bothering him, he emphasized this many times on the phone last night. If I have concerns CALL HIM ASAP. Don't wait.
I am learning!! Here's a little Lyme humor.
We too walked away from the reactions of the full Herx when Willow got through a few months of Naturopathic treatment. It included 2 hydrotherapies a week and a handful of pills 3 times a day. Willow hurt so bad, was naseaous and was so anxiety ridden we couldn't stand to see her going through it so we stopped the full treatment and realized we stopped the herxing :( Now we are at square one.
ReplyDeleteIt's good to back off if it's really bad, but not for long, the bugs have to be killed. Herxing is a part of this journey. Must herx to heal is my motto now. Hang in there Willow!
ReplyDeleteMy entire family of 6 has Lyme, Bart and Babesia. We have found that using Sarsasparilla and Burbur together are amazing for herxes. You can use it every hour if needed. It's hard to watch our children suffer. We switched my 13yo to homeopathics and she herx'd so bad for the first month. I had to fight the urge to stop the treatment. She is doing so much better now and I'm glad I stayed the course.
ReplyDeleteWow that must be so tough with everyone having Lyme and co infections. I will look into the Sarsasparilla and Burbur, never heard of it. Thanks for the info! I hope ya'll are finding improvements everyday!
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