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I haven’t posted in awhile, mainly because I don’t have big news yet. However, I remain hopeful – just call me “PollyAnna”. Well, maybe PaulaAnna.

I did get tested for XMRV at the Whittemore Peterson lab. My blood test was negative. Dr. Mikovits even looked at my blood sample and found nothing. She suspects I have a different variant of the retrovirus. That may be, but, at this point, it is anyone’s guess. Given that the VIP lab was found to be contaminated with the mouse retrovirus, I was actually pleased that I tested negative there. That’s better than a false positive, right? Okay, it’s all a confusing mess.

I hear that research on a retroviral cause to chronic fatigue syndrome is ongoing. I can only hope and pray that Dr. Mikovits’ work will continue, that the Whittemore Peterson Institute will drop charges against her and allow her access to her research. The WPI may own the research, but in a perfect world they would want her to continue studying this infection. Dr. Paul Cheney’s comments on this are encouraging. http://j.mp/szQUhQ

Meanwhile, like all patients, I continue looking for treatment. One of these has been CCSVI. CCSVI stands for “Chronic Cerebrospinal Venous Insufficiency,” a condition where people have obstructed blood flow in the veins that drain the central nervous system (the brain and spinal cord). Research indicates that CCSVI is significantly correlated with multiple sclerosis. http://www.ccsvi.org

I was tested using a doppler scan of neck veins which revealed obstruction of the veins and reflux of blood back into the brain. It turns out Lyme patients have CCSVI just like MS patients. So I traveled to Seattle, Washington to have the venous angioplasty treatment. My experience was amazing. The doctor and staff were excellent. When I woke from the mild anesthesia I was surprised to note that my constant headache of six years was gone. I had a return of the headache about three weeks later, but it is not constant. I never wake up with a headache. Also, my mental focus in better. But I still have classic chronic fatigue syndrome symptoms of extreme fatigue, swollen glands and spacial disorientation. In most patients the veins restenose over time.

Why do CFS and Lyme patients have this stenosis? I have two theories. It may be related to dips in blood pressure when standing which cause the veins to collapse. It takes a certain amount of constant blood pressure to maintain stable veins. A second quess is that red blood cells which clump together or are malformed (found in CFS) will not flow normally through capillaries. This would mean that blood flow out of the brain into the veins would be reduced allowing the veins to stenose.

My other treatment at this time is an oxygen concentrator. Since I have normal tissue oxygen levels I had to buy a used one, no problem. So far I use it one hour a day, set at 5, which is as high as my machine goes. It seems to help a lot with improved sleep and mental focus. We have been away a couple of weeks since I got the machine, and I could tell I was worse without it. It’s nice to be back home watching some stupid afternoon TV show while breathing oxygen. The only drawback is that it makes the show seem even more stupid since my brain is working better.

One final thought for now – Is chronic fatigue syndrome really Lyme? I used to be the poster child for Lyme at the CFS conferences. I clearly was an example of undiagnosed Lyme or borrelia infection, bull’s eye rash and positive lab tests, not diagnosed for years after the tick bite and then labeled as having chronic fatigue syndrome, not Lyme, until I finally got positive lab results This, along with the initial rash, convinced me I belonged in the Lyme camp. But does everyone with CFS actually have Lyme? A new study has led me to suspect that the two have a different cause. Dr. Brian Fallon, a Lyme specialist, and Dr. Benjamin Natelson, a CFS specialist worked on a study of spinal fluid proteins comparing both diseases. Turns out both diseases have about 2,700 distinctly different proteins. They are not the same disease. But there was one exception. One of the patients who tested negative for borrelia and had a CFS diagnosis patient turned out to exactly fit the proteins found in the Lyme patients’ spinal fluid. What do I conclude from this? Some CFS is undiagnosed Lyme, but not all. I am a chronic Lyme patient and may need to rethink antibiotics. Do I have CFS? Who knows.

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8 thoughts on “XMRV, Oxygen, CCSVI and the Kitchen Sink

  1. I am so happy for you that you have managed to all but eliminate that headache. Thanks for your thoughts on CCSVI. It is also interesting to see you have had such a positive response to oxygen.

  2. Interesting info on CCSVI. I’m having problems with dizzy spells but not showing the classic OI symptoms so my doc has no idea what to do next. I think I’ll push for a vein specialist visit after reading this. I know I had one bad vein leading into my brain from a CT scan done years ago. I can only imagine that the CFS has made things worse.

    As far as Lyme vs CFS there was a study done that showed different markers in the spinal fluid of Lyme and CFS patients. They are different enough (statistically significant separation) to show that the two illnesses are indeed distinct. http://www.research1st.com/2011/08/30/cfs-is-it-all-in-the-brain/

    • Baffled, be sure to read at the website I gave, because you will want to find a test center that is familiar with how to find venous stenosis in the neck veins.

      The study you mention is the same one I was discussing. It does seem that CFS and chronic Lyme are two different diseases, but some with the CFS label may actually have Lyme.

      • It comes back around to the definitions used for CFS. I know a few people with both Lyme and CFS. AFAIK, there are no studies to see if Lyme triggers CFS in some people.

        It is similar to the argument for FM vs. CFS. They are similar but having had FM for many years prior to contracting CFS I know how different they really are. I’m wondering how many people with FM are really misdiagnosed because FM is more widely accepted than CFS?

        I’m wondering if the symptoms are similar because they are all causing some sort of inflammation despite the different causes.

        I love the new ICC definition and wish we could drop the CDC version. According to them I can’t have CFS because I’m overweight. What is up with that???

        Not sure I’m making much sense. I’m a bit fogged today.

  3. Hi Paula,

    You’ve convinced me. I’m going to bite the bullet and spend as much time as it takes to remember what CCSVI stands for. It took me a week to master XMRV, and that one was only four letters.

    You wrote, “It turns out Lyme patients have CCSVI just like MS patients.” I recently learned that researchers are leaning toward the idea that MS starts in the gray matter, not white, as was previously believed. So there’s another similarity between the two diseases–cortical hypoperfusion. Did you ever have a SPECT?

    Your report on the oxygen was very encouraging. I hope you continue to update us.

  4. Flo, I did not have a spect scan, just a couple of MRIs and a doppler ultrasound of the veins in my neck. Yes, the oxygen seems to help a LOT. I don’t know if the CCSVI procedure has been as significant, but it is safe and my insurance did cover it.

  5. Thank you for writing about your experience Paula. I’ve been trying to find someone with ME who has had CCSVI both diagnosed and treated. As I read it , did the CCSVI help the headache? Has that continued to today?. My partner is crippled by a shocking headache and the silly CFS diagnosis.

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