Sunday, January 3, 2010

Happy Belated New Year...

I can't believe my last post was on December 19. Time flies....  

I don't think there is much more in the way of affordable treatments left although if I could I would try stem cells.

Low Dose Naltrexone didn't work for me. I may try it again in a couple months. Not sleeping along with the dizziness and increased vertigo-like feeling was a bit too much. It could be that it was just too much of a stressful time. My doctor thinks I had a bad reaction to the LDN which happens but I'm disappointed. I had some hope for this.

Yesterday I started Famvir at half the dose my doctor prescribed. The headache is to die for. I was up in the middle of the night last night trying to find the ketamine and licocaine spray that my doctor had prescribed while I was on Valcyte. I was pleased when I found them and disappointed when I saw they were expired. It can't be die off I'm experiencing since its only been two days so the muscle aches, headache, malaise, fevered feeling/chills all must be from another virus along with side effects.

Out of all the treatments I've tried (and I think I might have tried most things by now) the ones that have been most effective have been the methylation protocol, Vitamin C, antivirals, hydrocortisone, and pacing.

Still no news regarding XMRV. I've been reading patient reports on a message board and it sounds like VIP dx got overwhelmed and things are a bit chaotic there right now.

More later on this week....


  1. Happy New Year, Terri.

    I didn't want to say anything (at least I don't remember saying anything) about LDN when you started it because I didn't want to color your experience and I know it's definitely helped some people, but I tried it three different times and just couldn't tolerate it. It didn't matter if I took it during the day or at night, it disrupted my sleep and made some of my CFS symptoms worse. So, there seem to be people for whom it works and people for whom it doesn't. I'm so sorry that you seem to fall into the latter category like I did. Of course, you've only tried it once, so it might be worth one more try during a period when you aren't also starting on other medications.

    All my best to you in the new year.


  2. Our stories have some common threads, high MMP9, low MSH, etc, mold exposure.

    I have done Shoemaker's stuff, but still had high MMP9 after a huge house clean up.

    BUT, I think LDN raised my MSH by 5 points in about 5-6 weeks. I have a "double moldy" phenotype, so didn't anticipate my MSH coming up that fast, especially in face of the still high MMP9.

    I have added Benicar (a la Marshall Protocol sort of) to replace Actos, as the bone fracture risk was too high for me. I still keep CSM on hand for exposures.

    Last, I am taking antibiotics, low dose, and I am also doing straight T3, which gave my poor gut a boost right before I started the benicar.

  3. Happy new year to you too Terri! I'm sorry the LDN didn't work out, but there's no such thing as a failed experiment. I'm always amazed at your tenacity in trying these things. It benefits the rest of us.

    I've got a new doc now and I will be asking him about some of the things you record in your blog. So thanks.

  4. Hi Terri
    I'm relieved to see you...was starting to worry. I think we all have tried or still try what we think is worth it, so I admire you, too. I wish that had helped, but we're all so different.

    Let's all have the very best New Year that we can.


  5. Sorry the LDN did not work for you. Trying to find the right combination for ourselves is a challenge thats for sure. You amaze me with your courage to keep trying new things. Hope and pray that 2010 brings you more answers, better health, and an abundance of blessings...

  6. Are you still on the methylation protocol? Did you ever test to see if you got normal range results on the Vit Diag panel?

  7. I'm new to your blog, and live in SF. Wondering who your doctor is. I've recently come across information around neural therapy, and noticed you said your doctor performs it. I'm interested in contacting him/her for more info. Our timing is very similar. I noticed symptoms Dec 07, currently on Valcyte for HHV6 and Valtrex for EBV, among many other things... Feel free to email me directly at

  8. I'm so far behind - still trying to catch up on blogs!

    Sorry to hear LDN didn't work for you. From what I hear, some with CFS can't tolerate it, even at tiny doses (1 mg) - like Toni.

    I hope you have better luck with Famvir. I'm still on it - I did about 18 months on Valtrex, then maybe another 18 months on Famvir so far? I lost track. I asked my doctor to keep me on it for now since I got Lyme last year, since Lyme is known to cause viral reactivation. I think the antivirals have helped me. Hope it works for you and the herx isn't too bad.

    Happy New Year!


  9. Hi Terri, I'm sorry the LDN didn't help you. I hope your health starts to improve soon!