In late 2009 I was diagnosed with MS, after nearly 20 years of ever increasing symptoms. On advice from friends in the MS community, I started the Swank diet. I didn’t know if the diet would help my MS symptoms – but within a few weeks the chronic respiratory symptoms I had suffered since my teens receded. I no longer suffered from an itchy throat and eyes, and my constant sneezing stopped – though I was still left with inflamed neck glands. I threw my Rhinocort and Claratyne away and stuck with the diet!
By Dec 2009 I was diagnosed with CCSVI using Doppler ultrasound. The major veins servicing my brain and spine had extreme abnormalities, obstructing blood flow. The valve in my azygos (chest) vein was fused closed, and the body of the vein was severely constricted (termed “hypoplasic”). I also had a five inch long hypoplasic segment in my left internal jugular vein which was constantly throbbing, and the valve in my right internal jugular vein was stiff and thickened, impeding flow. No wonder I felt like my head, neck and chest were going to explode. I had balloon angioplasty to treat these veins, which was highly successful for the treatment of the abnormal valves in my azygos vein and right internal jugular vein. Unfortunately the hypoplasic left internal jugular vein was not successfully treated using angioplasty, and continued to throb. Eventually it collapsed, then I was left with a throbbing stump.
With two major veins successfully opened up I felt a massive relief of pressure in my head and chest. I felt like I’d been born again. Almost all my symptoms disappeared after the surgery. I had formerly suffered head pressure, chest pressure, a painful and rock-hard neck, numb feet and face, a burning sensation on my skin, urinary frequency, brain fog, and semi-paralysed hands which prevented me from participating in paid work for a year. After the surgery, I was left with just a numb face and toe, some unusual sensations in my head, and occasional brain fog. When I was fighting respiratory infections – my stump would throb like crazy. Having the full use of my hands again, and no more MS relapses, allowed me to return to full time work and resume my old life.
My thinking was crystal clear for about 6 months…but then episodes of mental confusion returned, and my face became increasingly numb. When I suffered even low levels of stress, I felt like I was being swallowed up. Every 6 months or so I felt a huge “turbulence” in my right internal jugular vein, and pressure would build up in that vein. I would become very confused. When the pressure built up enough, I would feel an “explosion” in my head, my eyes blur, and the pressure would be relieved. My thinking would be clear again – though my walking would be wonky for a while. I was so worried that I booked in for a CCSVI ultrasound to check my blood flow. I had to wait several weeks for an appointment, and by the time the appointment came around an explosion had cleared the feeling of pressure in my right vein. The ultrasound found nothing. I had a strong suspicion that my valve was being temporarily blocked by something that could be dislodged if the pressure built up high enough.
About this time I consulted with vein specialist Dr Paul Thibault, who told me that he believed my vein abnormalities and associated blood flow problems were caused by a chronic chlamydophila pneumoniae infection, which is known for infecting veins, constricting vessels, and causing demyelination. Was it possible that infectious colonies were growing on my valves, pasting them shut? Was this the cause of my throbbing stumpy left vein? Dr Thibault arranged tests which showed that I was infected. Perhaps the infection was even contributing to some nuisance respiratory symptoms I had which I’d never attributed to MS?
The standard treatment for a person infected with chlamydophila pneumoniae is a prolonged course of antibiotics, and a special diet. The diet is similar to the Swank diet, though I had to reduce the amount of protein I was consuming as this infection is known to impair the metabolic processes involved in the digestion of protein.
The adjustment to my diet was a success…the brain fog I had been suffering went away. In fact, it only came on around 8 hours after eating too much protein. It could be relieved by consuming carbohydrates, in particular glucose. Holy cow – my brain fog symptoms were more successfully relieved by glucose tablets than the traditional MS drugs I’d tried when I was first diagnosed!
The reaction of the antibiotics with chlamydophila pneumoniae is unpleasant. Though I continued to work full time through the treatment, if I had my chance again I would take a few months off at the start. Within the first few months, pus drained from my eyes and the glands in my neck. I experienced twitching in my fingers and toes, and pain in my teeth, as the organism was driven out of the nerves which control these. I felt clumps loosen up and move through my azygos vein. Eventually my neck glands came down and my eyesight became more vibrant. After a few more months, my stumpy left jugular vein stopped throbbing, the turbulent feeling in my right vein went away, and I stopped getting the periodic build of pressure in my right jugular. My facial and toe numbness subsided.
My latest Doppler ultrasound indicates that my blood flow is 30% better since I started antibiotic therapy. I’m still in the midst of treatment so I don’t know how my story will end…but it feels like I’m on the right path.
I continue to monitor emerging treatments for MS as this is a disease I will need to manage for life.
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