Wednesday, January 11, 2012

Treatment Update, Labs, and Prazosin

I've had a couple good days in a row. Yesterday I drove to a grocery store, a coffee store, and took Chelsea to a park for a walk. I had no problems. Then today I woke up saw that we were out of milk and went to another grocery store and got milk. It felt so good to actually be able to be in a grocery store without feeling too woozy. I felt mildly woozy at times but it was brief. I actually wandered down a couple aisle just because I could. I even tested my body out by walking down the cleaning aisle. No problem.

Then I got back and did 4 loads of laundry, folded clothes, and juiced. I'm exhausted now but I'm content.

This was unheard of 2 years ago. Even 1 year ago. I'm going to try my hand at cooking for 5 people and see how that goes. I'm looking forward to it. I hope they like Top Ramen.  :  )

I restarted Prazosin two nights ago. Prazosin is an alpha blocker used to treat high blood pressure. It is also used for congestive heart failure, PTSD, adrenal tumors, and something else that I can't remember.

I'd been waking up every morning around 4 or so with my heart racing, adrenaline surges, and a weird sort of panic. My ME doctor said that when we've been ill for a long time the sympathetic nervous system dominates the body causing symptoms like I described so he prescribed Prazosin.

When I first tried taking it in December I was sick and had that overall severe body pain, blinding pain in my eyes, chest congestion, etc...I didn't know if it was due to the Prazoson or not. My doctor suggested I stop and wait til the virus cleared before restarting.

So far I think this is a great medication. It is helping with sleep and it's really nice not to wake up with that racing feeling. I'm wondering if it might be helping me during the day too because my nervous system is a bit more balanced. I'm grateful that its working.

I've also been doing daily meditation which is also helpful.

I'm no longer on hydrocortisone because the adrenal supplements are helping. Oh, except I am on hydrocortisone for the bleeding. Thankfully it has all but stopped (knock on wood). I really hope it continues and doesn't restart once I stop the medication.

I got an email from my ME doctor saying he wanted to talk to me about my lab results. He forwarded a copy to me and they are whacky. The metabolic panel is all off. I have low globulin levels which I've never had before. One of the things globulins do is help fight infection and low levels suggest immune dysfunction. It could be caused by a number of things, some of which are serious, but I'm guessing its related to chronic infections and a faulty immune system.

Testing also revealed that I have active HHV-6, EBV, and Chlamydia Pneumonia. The testing my doctor ordered was more thorough than I've had before and so the results are solid. I'm still taking Famvir and Valtrex. My EBV levels have come down but not by much.

I'll talk to my doctor about all this next week. I'm interested in hearing what he has to say. I'm thinking if I could clear the Chlamydia Pneumonia (CPN) I could improve my functioning even more which would be awesome. I still believe the CPN is my primary infection because when I crash I feel exactly like I did when I had it back in 6th or 7th grade.

Current Treatment

Partial Methylation Support
Perque B12

Famvir 500mg AM
Valtrex 500mg Twice Daily

Naturethroid 32mg  1/2 AM and 1/2 HS (before bed)

Adrenal Support
Cytozyme AD Neonatal 1-2 pills AM and 1 pill HS
Ashwagandha 1 pill Am and 1 pill PM

Degenerative Disc Disease/Spinal Stenosis
Flexeril 3 times daily
Stretching twice daily

Clonazepam 1mg HS
4 drops Doxycycline HS
200mg Gabapentin
1mg Prazosin

Postural Orthostatic Tachycardia Syndrome
Pindolol 2.5mg-5mg AM (as needed) and HS

This treatment regimen is working for me. I may add in antibiotics to treat the CPN. I also plan on adding Bodybio Phosphatidylcholine to clear toxins.

My doctor wants to test my adrenal functioning as well as for parasites. He also wants to test me to see if I would be a candidate for the KPU protocol. Apparently people who don't respond to lyme treatment have some sort of deficiency that is treatable. I just have to get the tests done. Hopefully I can do them this week.


  1. SO pleased you're having some better days: about time ! :O)

    If only we had such thorough doctors here in UK.

    Enjoy what you can do and hope it continues xxx

  2. I'm glad to hear you're having some better days, Terri. Such a welcome relief for sure.

  3. It is good you are having better days and it is super that the bleeding seems to be if that can heal!
    Your treatment sounds helpful and daunting...but you seem up for the challenge.
    Hugs to you...

  4. I'm just so happy to read that your days are getting better. Wonderful! You're brightened my day with your news.

  5. The good days are always a good sign. I would get 1 or 2 good days a month, then the next month 2-3, then 3-4 and soo on. I hope this pattern continues like it did for me. I agree with you to remove the toxins. See my blog on hidden environmental toxins. Keep on keepin' on.

  6. Wow what an amazing day! I hope you have more days like that.

  7. Panic was one of the problems that went away when I went on a Paleo style diet. I can only highly recommend you look into what people like Terry Wahls do with regards to diet, I think she is on to something.

    All the best!

  8. Sounds like you are having some good days - wonderful! The type of things that those without ill health are likely to take forgranted, are a blessing to those of us for whom these things are difficult or impossible.

    Don't overdo it though!

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