I've seen the 'guru' doctor and naturopaths.
I've commenced the treatment.
And I've had the expected flare up.
In simple terms, the therapy involves diagnoses of the incriminated bugs. Then treatment using (very small) pulsed doses of antibiotics.
The bugs I tested positive for include lymes, cytomegalovirus and C pneumoniae. Although these bugs may be present in many people, my immune system has been overloaded and these bugs produce symptoms of arthritic pain and fibromyalgia in my body. It is really interesting, that the last time I had a cold or flu was over 2 years ago (I used to get 1-2 colds a year - and I spent a year in London on the tubes with no cold!). Any bug I interact with will always head straight for my joints and cause problems there. In fact, my 'guru doctor' said that when I start getting colds again she will be happy, as it is a sign my immune system is operating properly. But what about antibiotic resistance, huh? I hear you say... AB resistance is very rarely an issue, as these AB affect the soma of the microbe rather than the cell-wall.
Treatment: I have started on 1/4 pill on Mon, Thurs and Sat. This regime attacks the bugs on the days I take the meds, then allows my body's immune system to step up on the days I don't take meds. I started with 1 AB, have added a second, and will add a third next week. Each new AB gives my body a flare up.
Overall, I think I'm starting to notice an improvement. I find myself doing things now that I couldn't before: I can reach for a glass of water on my bedside table; put a seat belt on; yawn (this has been a big thing for me!); the list goes on. I even managed to go on a walk/run a few weeks back(!!!), before I had my recent flare up.
My fast response to treatment is directly related to my Chiropractor, massage therapist, singing teacher and strict diet. Thank you, thank you, thank you :o)
More on that stuff later.
Thursday, December 17, 2009
Friday, October 9, 2009
80% success rate****
More confusion over my New Diet!
I only just got to grips with the last one, and now it's different again!
Now I need to try and avoid foods high in salicylates, wheat/gluten, dairy, sulphur, sugars (including Stevia - a powdered herb I was using as a sweetener) and yeasts.
The new diet came after visiting my new GP, Dr Davis. The major (welcome) change has been that I'm allowed a few fruits - mangoes, pears, apples, red tipped banana's. I was also prescribed a delicious french vodka named Ciroc!
I've been on the new diet just over a week, and I feel the best I have in months.
The next step in this process is seeing a Naturopath (Claire) who will fine-tune which foods I'm sensitive to and then my diet will be adjusted (again).
After that I will see a guru-type Naturopath (Claire's mother Anne, minimum 2 month waiting list) to determine which bugs are causing the inflammation.
Finally, after the bugs have been identified, Dr Davis will treat me with antibiotics. She says with confidence, that she can help 80% of people with RA. I believe her, and I want to get started straight away - this waiting game is driving me round the bend. I am so filled with hope that I will be one of the 80% who get better.
A tiny, tiny part of me recalls all the other practitioners who have said they can 'cure' me, and failed. But I'm chosing to ignore those doubts as I have faith that I will get healthy... and this feels like the right approach.
I only just got to grips with the last one, and now it's different again!
Now I need to try and avoid foods high in salicylates, wheat/gluten, dairy, sulphur, sugars (including Stevia - a powdered herb I was using as a sweetener) and yeasts.
The new diet came after visiting my new GP, Dr Davis. The major (welcome) change has been that I'm allowed a few fruits - mangoes, pears, apples, red tipped banana's. I was also prescribed a delicious french vodka named Ciroc!
I've been on the new diet just over a week, and I feel the best I have in months.
The next step in this process is seeing a Naturopath (Claire) who will fine-tune which foods I'm sensitive to and then my diet will be adjusted (again).
After that I will see a guru-type Naturopath (Claire's mother Anne, minimum 2 month waiting list) to determine which bugs are causing the inflammation.
Finally, after the bugs have been identified, Dr Davis will treat me with antibiotics. She says with confidence, that she can help 80% of people with RA. I believe her, and I want to get started straight away - this waiting game is driving me round the bend. I am so filled with hope that I will be one of the 80% who get better.
A tiny, tiny part of me recalls all the other practitioners who have said they can 'cure' me, and failed. But I'm chosing to ignore those doubts as I have faith that I will get healthy... and this feels like the right approach.
Thursday, September 24, 2009
I don't want to feel like an 80 year old
It's been a year since I was first diagnosed with rheumatoid arthritis, although it was misdiagnosed and brushed aside as bursitis or tendinitis for 9 months prior to that.
Nothing can prepare you for living with chronic pain, and to be told that your body is degenerating and there is no cure. I was 29 when my body started hurting in ways it never had before. I would wake up in the morning and inexplicably not be able to move an arm or a leg, and my joints had a deep ache. It was moving around my body rapidly at this stage, and I was treating myself with as many anti-inflammatory drugs that I could get my hands on.
The pain and weakness I experience at times is overwhelming: I used to be a great sleeper. Now, I can't remember having a full night sleep, without waking up in pain and having to move. Turning from one side to the other can be so painful I have to work up the guts to do it. At times I have been so weak that I can't even pull the sheets up over me. I've had to ask Gerald to lift me out of bed and dress me some mornings. And ask him to turn the shower on, pour a cup of tea, chop vegetables, help me out of the bath... the list goes on (thanks to Gerald's endless patience and Mum's positive help and energy I somehow get through these hard days) I have had to limp for so long -even on days when I think I am walking ok, people will come up and ask me what I've done to my leg, old people over take me and Jesus-pushers come up to me to invite me to learn about God.
Back in London, I'd had to quit my job because of my pain and immobility. My Rheumatologist prescribed steroids and a chemotherapy drug (methotrexate) and told me to stop being in denial about my condition. The known side effects of these first line drugs made me want to dig myself into a hole and be covered with dirt. It would be a lifetime of drug-dependence - starting with the above, and inevitably adding more poisons. There had to be another way.
We decided we had to try and get me better, so we left the terrible London weather and global financial crisis behind and traveled home to Melbourne via India.
India seems like an odd place to go, right? Well, I was chasing a cure for RA without drugs. We had been referred to a respected Ayurvedic (Traditional Hindu Medicine) Doctor in Pune, India. India had never been top of my list of places to visit, but I wanted to get well.
It turned out to be the inspiration I needed to keep following my path. After I had been in Pune for a few days I was off all pain-killers and anti-inflammatories. And within a week of treatment I was feeling 80% better - I felt like I could run again - or at least run a few steps to save myself when crossing a road in India!
We stayed in India for 6 weeks, and we were treated for about a month. Diet, herbs, daily massage, sauna's and basti's put me on the right track to healing.
When I arrived back in Melbourne (in May), I gradually started feeling worse - we arrived to the beginning of winter, and had the usual stresses of moving back into our home. We took things slowly, as I was unable to help Gerald much. But is felt so good to be home. I love Melbourne.
Since May I have been trialing various diets, had many blood tests and procedures and seen various health care professionals - all of them claiming to be able to treat RA, and many of them failing. I get weekly Acupuncture and massages - these really help me. I'm also on a bunch of supplements recommended by a wonderful intergrative medicine clinical consultant.
The current diet I am on is an anti-candida diet. A strong Candida sensitivity was flagged in one of my blood tests. It is a common problem for people with autoimmune diseases (diabetes, MS, crohn's etc) to have an overgrowth of candida in the gut, and some less mainstream schools of thought think this can be a precipitating factor in developing disease.
It's a difficult diet: no sugar (of ANY kind - eg no fruit, alcohol, honey, malt, agavae nectar etc), no wheat, no coffee, no yeast/fermented things, no tofu, no mushrooms, no starchy vegetable (potatoes, corn, beans), no oats.
But in less than a week of going on this diet I am feeling a LOT better, but not great! Should I say I feel 5/10. Which is pretty good!
I am seeing a doctor next week, who is interested in antibiotic treatment of RA. There is a theory that RA is due to an allergic reaction to toxins produced by microbes called mycoplasma. So, I'm hoping this will help me. The GP works with a naturopath, and treats RA with an AB/diet approach. Both have suffered from rheumatoid arthritis themselves. I am much more comfortable taking these drugs than those recommended by Rheumatologists. Although I am aware AB will increase the Candida load. Hmmmmm
Anyway, this is my big hope at the moment.
I'll keep you posted.
Nothing can prepare you for living with chronic pain, and to be told that your body is degenerating and there is no cure. I was 29 when my body started hurting in ways it never had before. I would wake up in the morning and inexplicably not be able to move an arm or a leg, and my joints had a deep ache. It was moving around my body rapidly at this stage, and I was treating myself with as many anti-inflammatory drugs that I could get my hands on.
The pain and weakness I experience at times is overwhelming: I used to be a great sleeper. Now, I can't remember having a full night sleep, without waking up in pain and having to move. Turning from one side to the other can be so painful I have to work up the guts to do it. At times I have been so weak that I can't even pull the sheets up over me. I've had to ask Gerald to lift me out of bed and dress me some mornings. And ask him to turn the shower on, pour a cup of tea, chop vegetables, help me out of the bath... the list goes on (thanks to Gerald's endless patience and Mum's positive help and energy I somehow get through these hard days) I have had to limp for so long -even on days when I think I am walking ok, people will come up and ask me what I've done to my leg, old people over take me and Jesus-pushers come up to me to invite me to learn about God.
Back in London, I'd had to quit my job because of my pain and immobility. My Rheumatologist prescribed steroids and a chemotherapy drug (methotrexate) and told me to stop being in denial about my condition. The known side effects of these first line drugs made me want to dig myself into a hole and be covered with dirt. It would be a lifetime of drug-dependence - starting with the above, and inevitably adding more poisons. There had to be another way.
We decided we had to try and get me better, so we left the terrible London weather and global financial crisis behind and traveled home to Melbourne via India.
India seems like an odd place to go, right? Well, I was chasing a cure for RA without drugs. We had been referred to a respected Ayurvedic (Traditional Hindu Medicine) Doctor in Pune, India. India had never been top of my list of places to visit, but I wanted to get well.
It turned out to be the inspiration I needed to keep following my path. After I had been in Pune for a few days I was off all pain-killers and anti-inflammatories. And within a week of treatment I was feeling 80% better - I felt like I could run again - or at least run a few steps to save myself when crossing a road in India!
We stayed in India for 6 weeks, and we were treated for about a month. Diet, herbs, daily massage, sauna's and basti's put me on the right track to healing.
When I arrived back in Melbourne (in May), I gradually started feeling worse - we arrived to the beginning of winter, and had the usual stresses of moving back into our home. We took things slowly, as I was unable to help Gerald much. But is felt so good to be home. I love Melbourne.
Since May I have been trialing various diets, had many blood tests and procedures and seen various health care professionals - all of them claiming to be able to treat RA, and many of them failing. I get weekly Acupuncture and massages - these really help me. I'm also on a bunch of supplements recommended by a wonderful intergrative medicine clinical consultant.
The current diet I am on is an anti-candida diet. A strong Candida sensitivity was flagged in one of my blood tests. It is a common problem for people with autoimmune diseases (diabetes, MS, crohn's etc) to have an overgrowth of candida in the gut, and some less mainstream schools of thought think this can be a precipitating factor in developing disease.
It's a difficult diet: no sugar (of ANY kind - eg no fruit, alcohol, honey, malt, agavae nectar etc), no wheat, no coffee, no yeast/fermented things, no tofu, no mushrooms, no starchy vegetable (potatoes, corn, beans), no oats.
But in less than a week of going on this diet I am feeling a LOT better, but not great! Should I say I feel 5/10. Which is pretty good!
I am seeing a doctor next week, who is interested in antibiotic treatment of RA. There is a theory that RA is due to an allergic reaction to toxins produced by microbes called mycoplasma. So, I'm hoping this will help me. The GP works with a naturopath, and treats RA with an AB/diet approach. Both have suffered from rheumatoid arthritis themselves. I am much more comfortable taking these drugs than those recommended by Rheumatologists. Although I am aware AB will increase the Candida load. Hmmmmm
Anyway, this is my big hope at the moment.
I'll keep you posted.
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