So much has happened since I last posted in 2014, but I will keep it to the abridged version!
In a bid to get my health on track, try to minimise the impact of my jawbone infection and to help my daughter with her type 1 Diabetes, we went to Mexico several times in 2014 and 2015. The first place we went to was RCT in Puerto Penasco for some targeted peptide treatment. This cost a fortune but both of us were in a pretty bad state of health and it was worth investigating. What is life worth, basically? It certainly helped both of us initially but then the doses were reduced as an experiment and gradually we started to slide back. We bought a few more of the higher doses of injections, which helped, but we couldn’t afford the price of the treatment to maintain the beneficial effects.
We then went to another place in Mexico, which was less expensive at the time. This was in Tijuana, where we got stem cell treatment and immune modulation. Again, this helped and we felt a lot more ‘human’ when we got back. The other things that helped both of us – and they were a lot cheaper in Mexico – were HBOT and IV vitamins and glutathione. If only we could get the same thing for the same price in the UK. If I were in a chronic condition and lived in the US, I would book myself on a flight to Mexico and have a few weeks of both of those, as we felt totally amazing after even just a few.
I carried on with HBOT when I got back to the UK at a local MS centre but, although it helped, the pressure was a lot less than the chamber in Mexico and I would have had to go to a diving centre to achieve the same results, which would have been difficult, not to mention costly.
My health started to slide gradually and I was – and still am – always aware that I have to look after myself way more than the average person or the jawbone flares up. My blood pressure was rising, my shoulder on the same side as the infection was constantly painful, my sleep pattern was off and I was getting more breathless plus my (what I now realise) IC symptoms were worsening.
Out of the blue I got contacted by someone who knew I had a jawbone infection and missing teeth and she told me about a supposedly brilliant maxillofacial surgeon in Lugo, Spain, who not only operated on jawbone infections but used ozone (a must) to help sterilise the site and could place zirconia implants. I felt the stirrings of hope and contacted him. He answered all my questions to my satisfaction and it sounded almost too good to be true – a perfect fit, on paper, at any rate.
After a week in Madrid with my mum I went off to Lugo by bus. I met up with some great people and had the chance to immerse myself in Spanish, somehow managing to communicate. The Hotel was full of ‘mature’ Spanish people on a package and smelt of sulphur because of the sulphur baths. Apart from that it was fine. I had a room overlooking the river, the staff were lovely and Lugo was an attractive town.
I went up to the Polusa hospital to meet up with Dr Mendonca. He was not exactly what I anticipated. I took my CT scans with me and he barely glanced at them. I told him that several people had said the infection in the jawbone was so big it was virtually inoperable but he shrugged that off and said it was ‘very small’. I thought maybe he was used to bigger problems than mine, so convinced myself that this could be a good thing – ie it was possibly no big deal to him because of his experience. He took an x-ray and told me I would need to have several teeth out on both sides, leaving only four at the top and I could replace them with implants but only the bases of the implants would be placed initially. I was shocked, to say the least. He was dismissive of my concerns and implied I was being vain and pathetic. He told me he could sort the infection out, do a sinus lift, a bone graft, 5 extractions and fit 8 implants at one sitting. As I only went there to get the infection sorted out and investigate the possibility of implants it was a lot to take in. I got back to the hotel room and contacted the person who had recommended him, telling her I thought I would go for a second opinion. She absolutely bent over backwards to convince me not to do this and to stick with Dr Mendonca, telling me how amazing a surgeon he was and, essentially, how fortunate I was to have this opportunity. She had seemed genuine enough in our previous correspondences so I allowed myself to be swayed by her, against my better judgement, as it turned out. But I decided to draw the line at having teeth pulled out on the other side and, in the end, we agreed that I would have the two extractions, 5 implants, sinus lift and bone graft.
When I went back for the surgery I was very nervous but tried to think of how I would feel when it was all over – FINALLY the end of many years of knowing this was lurking in the background, a constant drain on my health and energy. The other patients I had met from the UK had been operated on in a theatre but Dr Mendonca told me my operation was ‘very small’ and it could be done in a chair at a closed off area at the back of his office. Even as I am typing this I realise how idiotic I was to go along with him – on every front – but it is difficult when you have few options and you are on your own in a strange country with an arrogant surgeon, being reassured by an apparently intelligent and decent fellow Brit that he was as good as it gets in the dental surgery arena.
As I was coming round from the surgery Dr Mendonca told me they had done a lot more than he thought – and that the cavitation was ‘massive.’ Well, hello, did I not explain that to him when I showed him the CT scan? I tried to push the doubts about his judgement to the back of my mind and concentrate on moving forward. During the next few days I didn’t feel too great but thought that was just the aftermath of all that surgery. I got back to the UK and felt worse and worse. I started to suspect that I may have an infection and contacted Dr Mendonca. He told me it was ‘detox’. After another day or so I knew it definitely wasn’t detox. I was in agony and my partner was very worried. I called Dr Mendonca and we agreed that I would fly to Spain in the next few days and he would take a look. He opened up the surgery site and said there was a ‘mild’ infection. One of the implants fell out – the bone graft hadn’t taken but he said he was taking it out ‘as a precaution’.
I felt better to begin with as the infected material was released but after a day or two I got worse and worse. A huge amount of gunk was going down the back of my throat and I could not sleep lying down. I felt hot and sick with general malaise. It was extremely frightening. Eventually I saw Dr Mendonca who was very vague about what to do. He said I must be ‘immune compromised’. Well anyone with any sort of infection in the bone is pretty much immune compromised so he would have known that in the first place. I decided to go home early but asked him about my lower jaw, which had also flared up after the surgery. I asked if he had come across infected bone there when he was operating. He avoided the question several times but eventually said ‘no – it was perfect.’
At home my condition deteriorated further and neither Dr Mendonca nor the person who had recommended him wanted to know. I contacted Munro Hall clinic in Bedfordshire – the place I would have gone to for a second opinion had I not been persuaded against it beforehand. They normally have a three month waiting list but, after reading my notes, they told me to get in the car and get there that day as I was in a life threatening condition.
It was confirmed I had both chronic and acute infection right along both the top and bottom of my jaw on the right hand side. Dr Mendonca had just banged implants into infected bone. I was slotted in for emergency surgery – all the implants were removed, another tooth taken out and the jawbone scraped. It was a well performed surgery but, as I was in such a poor state of health when I got there, although it saved my life at the time, I did not – and have not – made a complete recovery.
Dr Mendonca had not only driven the infection deeper into the bone, he also punctured the sinus floor with one of the implants, so the foul tasting gunk at the back of my throat was still constantly flowing and I had a hole between my mouth and nose which was impossible to keep clean. I had antibiotics, high dose vitamin c (which I am sure kept me alive) and ozone injections into the site, but it was very touch and go. Everyone was concerned and I really though I had no future with my partner and family. I was in constant misery and pain and couldn’t see a way through. One of the dentists at Munro Hall recommended the Vision of Hope Clinic in Brighton for high dose vitamin c infusions and ozone therapy. I contacted Dr Andre and headed off down. When I got there I was completely broken – in pain, grey looking, chest pains. I went to grab some food shopping from Waitrose that night and envied every single person for being ‘normal’. I Googled euthanasia and cried when I realised I couldn’t even afford to die – at least not by that method. That night was the worst of my life. I used everything I could think of to bring the infection and pain down and eventually found some Jim Humble information about dental infections that recommended a combination of MMS and DMSO. It was totally foul and as I swished it round my mouth a load of the mixture came out of my nose, combined with discoloured blood. It was truly my lowest point.
The next day Dr Andre cheerily asked me how I’d found the previous night – and I burst into tears. He hooked me up for my first treatment – autohaemotherapy, which is ozone mixed with some of your blood. He also irradiated the mix with UV light. Later that day I had IV Vitamin C and I felt marginally better. After my second lot of treatments on the Monday I felt well enough to walk into Brighton. It was fantastic just to be able to sit in a cafe and sip on peppermint tea without thinking about death and pain constantly.
I met some great people in those two weeks and felt significantly better when I left. I dipped a bit and decided to go back for another week, just for a few more treatments as it was all we could afford. I also did a juice fast – which was really hard at the time but fast forwarded me tremendously.
This all took place last year – I had the surgery in May and my last visit to the Vision of Hope Clinic was in July. I am still not well – but I am better than I was then. My challenge now is to get better – completely – doing whatever it takes. That is what my future posts will focus on – the things I do, why they should help not only me (hopefully), but many other with chronic illness and how successful I have found them to be.