Status Post XMRV

I have been in the doldrums, but since blogging is my hedge against powerlessness…

This is how deep in it I have been; my inner blogger didn’t even twitch for this: Partial molecular cloning of the JHK retrovirus using gammaretrovirus consensus PCR primers. Grossberg SE, …, Sun HY

 “Unlike earlier reports, in which MLV-like sequences were identified in human source material, which may have been due to murine contamination, budding retrovirions were demonstrated repeatedly by electron microscopy in uncultivated lymphocytes of the index patient that were morphologically identical in their development to the virions in the JHK-3 cells, and immunological evidence was obtained that the index patient produced IgG antibodies that bound to the budding viral particles in patient PBMCs and in the JHK-3 cells. “

It’s tough to keep writing about it when the medical and scientific communities aren’t interested. This group has been publishing about their retrovirus since 1995. Andrew Mason and Hervé Perron have been publishing about their respective retroviruses for over a decade and nobody is interested:

I haven’t heard or seen anything that makes me feel hopeful of meaningful treatment since the demise of XMRV. The only perhaps promising development was Dr. Hornig saying publicly that they have isolated a novel pathogen. Cruel to have said so without more information, but let’s hope it is true and they publish soon. Otherwise, it is pretty much the same ole, same ole.

Chronic Lyme Disease seems to be experiencing a horrifying resurgence as the explanation for what ails us. A wise doctor, one of the few, once told me that antibiotics are the surest path to worse. Wish I had listened to him. ILADS hasn’t updated their guidelines since 2006, even though lots and lots of people have been made worse by their protocols. They are stumped because in all these years they still can’t show that what they do is a good idea.

Borrelia burgdorferi is obviously one of the things that can happen to the microbiome if one is bitten by deer ticks. The problem is that it can’t be eradicated  with antibiotics once it is established and the antibiotics are harmful. Weigh these papers:

This is as positive as it gets in the literature:

Nevermind that we can’t really tell who has it or whether it is what is making them sick. They could tell that a man from 5000 years ago, found frozen in the Aps had Bb, but he died of trauma. However, they can’t really tell if we have it. The Iceman’s Genome Reveals Evidence Of Lyme Disease, Lactose Intolerance And Distant Relatives.

But what about the people who do get better from antibiotics? My daughter got several remissions in the early years. Did it even have anything to do with Lyme? Broad spectrum antibiotics kill in a broad spectrum way.

So who should get antibiotics? That is the million dollar question. I keep listening and it seems to me the people who are better off for having taken antibiotics know it pretty quickly when they go on. When it works, it works. This idea that a prolonged “herx” is a good thing is lunacy. As bad as blood letting with leeches. It is a cytokine storm, not a good thing and if it lasts a long time, it is damaging.

Two suicides in the Facebook ME/Lyme community yesterday. Both beautiful young women. This should not be happening! And the response is, we understand why they did it. How can that be? When is it going to change? Not soon. Nobody is going to save us. We have to help ourselves. The disease is treatable. Not curable, but treatable. Read the last blog. K is not an anomaly. She has come a huge distance by finding synergy in gentle therapies, none of which would have done it alone. But those therapies aren’t even on the table for discussion.

Ali and I have been on the Wahls diet for 2 weeks. Terry Wahls is a physician with secondary progressive MS who got herself out of a reclining wheelchair with diet. She was already on a paleo diet which had slowed her progression, but modified it to get reversal. Since my working hypothesis is that we have MS Light, I decided to give it a try. I already know it is helping me. My chronic nausea is almost gone and my gut function is much improved. Ali is less sure, but likes it and plans to continue. Only two weeks. We were already on a good gluten free, mostly dairy free, whole food diet. Changing diet is a process, but we have taken it to the next level. Force feeding vegetables:). 9 cups daily, or as much as we can stuff in. Lots of leaf and berry smoothies. We have eliminated grains and added sea vegetables. Working on organ meats and bone soup.

There is no one right diet for everybody. Nor do I expect it to be curative. Like everything I do, it is about quality of life. In particular, getting our food from local CSA’s and learning about the source of what we are eating is feeling really good. Learning about food is fascinating. Focusing on making each bite nutrient dense is working for me. Yes, it is a lot of prep work and yes, it is more expensive. I couldn’t have started without Ali, but now I could do it alone. I posted something about the diet on Facebook and the comments that it is impossible are heartbreaking. Why do these patients have no help?

Dr. Wahls has a book on Amazon Minding My Mitochondria in print and kindle editions. Here are her recent papers:

She is doing the work. The Wahls Foundation is working to further her research and is on Facebook. She found something that helps and she is putting it out there. Here are the videos that inspired me: