My recovery from CFS due to osteonecrosis in my jaw

For virtually my entire life I've always been really healthy, hardly ever taken any time off sick. In December 2005, age 22, I knew something was wrong with me, although I really couldn't put my finger on it. My energy levels seemed drained, for a few odd days in December I slept for virtually the entire day which was most unlike me. This continued for a month or two, until in January my health just fell off a cliff literally over night. It was pretty much exactly like I had flu, but instead of the symptoms being over in a few days, they went on for weeks and months. I had headaches, muscles ached, felt extremely drained of energy. I developed a permanent sore throat. My sleeping also became extremely disturbed, in fact it got so bad, I totally lost control of it and basically had no day or night. I'd just wake up and sleep randomly.

For virtually 2 years about the only time I ever left the house was to go see the doctor. They performed all sorts of tests on me, mostly blood tests which showed virtually nothing. I had a slight anomaly on my liver function test, which they debated whether it was outside of the normal range for someone of my age, but came to no real conclusions and eventually diganosed me with CFS. Now you gotta understand, I already knew about CFS before I had this diagnosis, and it was a death sentence for me, because virtually all of my immediate family have had it. My mum has basically had it my entire life, and my sister had it for a good 5 years. Losing 5 years of my life into a giant black hole, or worse, staying like this forever, was just an unimaginable nightmare for me. Coming home from school when i was 15/16 and basically everyone in my house being asleep because they were all ill, wasn't especially fun.

I played the waiting game for, nearly 2 years. Put my health into the hands of the doctors, and they basically had no answers. None at all. So I realised the only person that was going to fix me, was myself, so I set upon a quest to find out what was wrong with me. I was really driven, and I had virtually unlimited time to work on this problem.

Anway to cut a long story short, I figured out I had osteonecrosis in my jaw. It turns out that things we are told are safe, are not safe. Root canal teeth are not safe, they are all toxic, very toxic to the body. When I had mine pulled, the dentist found that all the bone around the tooth had basically died and turned to mush, even though other dentists had x-rayed me and told me everything looked really good. You have to understand I had no pain or swelling or discomfort from this tooth. I had no pus etc etc, it all looked fine. I tried hard to convince myself that my front tooth wasn't toxic and root canal teeth aren't bad, but the more literature on the subject I read, the more I realised they do and can cause chronic disease in some people. When my health got so bad, I snapped and just had to try it. Looking back it was the right decision.

That wasn't the end of my health nightmare though, I had 2 other large infections in my jaw from horizontally impacted wisdom teeth. I had the teeth removed, it looked like it healed up fine. In reality I had holes in my jaw which were invisible to x-ray (they showed up on ultra sound). Again I had x-rays and they told me everything was fine. But the cavitat ultra sound I had, showed up a massive area of necrosis in my jaw. Anyway there are very few people in the world that can do this kind of surgery, because mainstream healthcare and dentistry basically refuses to admit the problem exists, even though probably a lot of people have it. If you've ever had a tooth extracted, you could have it. In fact according to the literature if you've had wisdom teeth extracted there's something like an 80% chance you have this problem. Everything looks fine on x-ray so who cares right? I found the one dentist in the UK that can do this kind of surgery, and when he opened it up, the necrosis I had was really extensive, and sadly for me extended under living teeth which I had to lose. It also smelt terrible when they opened it up. All the other dentists with their x-rays etc etc had missed it, and the doctors had failed with their blood tests.

It's been less than a month since I had the surgery, but already I feel a lot better. I have a lot more energy than i had a month ago and generally am feeling great. The pain I was getting in my lymph nodes in my neck has nearly gone. I still have quite a lot of healing to do from the surgery but I am getting there :) Really excited about getting my life back and having a real chance at a future.

Anyway, that's my story, I've also documented it in detail on my website, along with my ultra sound scans I had, my x-rays, and a few pictures of the surgery I had. I hope that the information on my website, might be able to help others.

Ian

http://web.ukonline.co.uk/celia.curtis


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Related Websites
http://web.ukonline.co.uk/celia.curtis
Information and further resources about osteonecrosis of the jaw
http://www.afme.org.uk
Action for ME, a UK charity for CFS, ME sufferers
http://www.cfspages.com
http://www.chronicfatiguesyndrome.me.uk
This site includes a forum and live chat, as well as articles, advice and stories from CFS sufferers.
http://www.fightingfatigue.org
Blogs, articles and lists of web resources for CFS and Fibromyalgia
http://www.healingwell.com/pages/
HealingWell.com Resource Directory
http://www.me-cfs-recovery.co.uk
Information about CFS and treatment at me-cfs-recovery.co.uk and me-cfs-treatment.com


Comments
By CFS/ME Recovery Stories, 16-May-2010 03:58
Hi Ian Thanks so much for sharing your story. I have copied your story (and website link) to my Facebook group CFS/ME RECOVERY STORIES where it can give information and hope to others. I hope you approve (but if not, I will of course remove it). I would be honoured if you would consider joining the group and adding a comment about how long you've been recovered. I do hope your mum and sister are okay and on their way to a full recovery too. Best wishes to you all, Melanie x http://www.facebook.com/group.php?gid=284916226815
By Belinda, 02-Dec-2010 03:55
So glad I've found this, and the Mungo hall clinic which you link to on your website ( I presume that's the one you refer to here?) I feel like I have a wrapped present to open. It's going to hurt and smell bad, but when I've gone through it all I'm going to feel energetic and alive again!
By Belinda, 02-Dec-2010 03:57
PS I could find no link on your website to make contact or leave comments. I presume the Forum page would have had something, but the link only takes you to your home page.
By Ian, 05-Dec-2010 13:01
Hi Belinda, I've tried to refrain from mentioning any named therapies or clinics as such, as it really detracts from the message. However yes I went to the Munro Hall Clinic. Graeme, the dentist is probably one of the best in the world at cavitation surgery. He has been doing it 15 years or so. Granted there aren't many people that do it, but either way if you go there you'll be in good hands I'm sure. The waiting list is long though .. and it's not cheap. I pretty much spent a fortune there. In fact a year after I posted the above, I actually had to go and have the surgery re-done as it didn't fully heal first time around. A nightmare yes, so I am on phase 2 of the recovery now. But without a shadow of a doubt it was what destroyed my health. Cavitations really are a life threatening problem, how mainstream healthcare can simply ignore them, god only knows. I am not sure if I would have made it to 30 with the progression of the cavitation I had. It was slowly just working it's way along my jaw destroying more and more bone, and taking my health with it. In contrast with others, their cavitations are often simply confined to the space that a tooth was extracted and do not progress through the bone. Hope this helps in some way, Ian
By ana, 16-Feb-2011 06:56
Les agradeceria por favor me den el nombre del doctor y el hospital en donde hacen este tipo de cirugias.Tengo a mi madre con este mal, ella se encuentra en Espania. Gracias.
By Kendra, 17-Feb-2012 07:50
I can't believe I have found this!! After 5 years of suffering with a foul taste coming from an extraction site, and 8 years of CFS I can't believe I've finally found someone who will believe me when I say there is a problem with my teeth!! I'm on the waiting list. :) Would really love to have a look at your website Ian, but I can't find a working link? Great recovery story, really inspiring and gives us all hope. xx
By Ian, 08-Apr-2012 04:29
Sorry for super late reply. My website went down when I changed ISP. Here's a pic of my problem. http://i126.photobucket.com/albums/p95/dukeeeey/dental%20stuff/Untitled-1.jpg and http://i126.photobucket.com/albums/p95/dukeeeey/dental%20stuff/mri-1.jpg
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This recovery story is in categories: Chronic Fatigue Syndrome, ME (myalgic encephalitis), Osteonecrosis