This week (from April 11th) is "tick awareness week". BADA UK - Borreliosis and Associated Diseases Association - is a fantastic charity that works really hard to spread awareness of ticks, tick awareness and prevention, and awareness of tick-borne diseases, including Lyme disease. All week they have been posting articles on their facebook page of people sharing their Lyme disease stories.
Lots of info can be found at these sites:
BADA UK
Tick Bite Prevention Week
An overview of Lyme disease in the UK and Ireland
Lyme Disease Action UK (FAQ)
Spreading awareness of Lyme disease is really important as the disease seems to be on the increase in the UK and awareness is very low. When I say I have Lyme disease, most people do not know anything about it. Because the symptoms can be so varied, Lyme is often misdiagnosed. It is common for Lyme to be misdiagnosed as CFS, like in my case, so the more people are aware of Lyme disease, the higher the chance of treating the illness quickly and efficiently instead of in its later stages when it is much more difficult to treat.
This American study found that 88% of "CFS" patients treated with antibiotics experienced some improvement.
Lyme misdiagnosed as CFS - USA study
This is a huge deal. CFS is so debilitating, has no known treatment, and some people are severely disabled and unable to work or lead any kind of normal life. Antibiotics are not expensive drugs. A simple antibiotic could make so much difference to so many people. Some doctors seem to be against using antibiotics long-term due to the risk of side effects, but in this case the benefits clearly outweigh any negative side effects. Antibiotics are given long-term for acne, so I do not see any reason why they should not be tried in these cases. I know they have made such a huge difference to me - they really have given me my life back.
If you are reading this, please tell someone else about Lyme disease. Increasing awareness may help prevent someone from becoming really ill.
Thursday, April 14, 2011
Sunshine and palm trees
Last weekend we went down to Florida to visit some friends. Sadly, our friend is very ill with cancer but we were pleasantly surprised by how well he is managing, and we enjoyed spending time with them both in the beautiful Florida spring sunshine surrounded by all the tropical plants I love so much.
The weather was fabulous. It was SO hot and it was funny to think that when we stayed in Florida it wasn't really considered hot until June when the humidity soars. I guess we adapt quickly. So 80 degrees in April was great, but it was really really hot - we were all struggling to imagine it could actually get much hotter! We arrived back into Newark late on Monday night to rain and winds and it has rained for the last two days although today is sunny and it is a very pleasant 68 degrees outside. Maybe spring is here at last...
I was feeling pretty good when we were in Florida, I'd had two weeks off the Samento since I knew I was going away and it just showed how much better I am. Sometimes when I'm taking Samento and it produces all the crazy herx symptoms it seems that I still have a really long way to go, but to take a break from it and feel so much better is very reassuring because it really does show that it is the herxing that makes me feel so bad and I really am way better.
So this week I'm back on the strong Samento dose again (along with all the other abx and supplements that I always take) and the herxing is back, although it's not as bad at the moment. Sometimes it seems to build up over the week that I take it, but I'm hoping that since I had such major reactions the last time this time it will be less. If that's the case, I'll just have to take an even stronger dose next time, but it would definitely be a sign of some major progress.
Some pics from Florida:
The view from our friends' garden:
Me standing in a Banyan tree at St. Pete's
Banyan trees at St. Pete's
The weather was fabulous. It was SO hot and it was funny to think that when we stayed in Florida it wasn't really considered hot until June when the humidity soars. I guess we adapt quickly. So 80 degrees in April was great, but it was really really hot - we were all struggling to imagine it could actually get much hotter! We arrived back into Newark late on Monday night to rain and winds and it has rained for the last two days although today is sunny and it is a very pleasant 68 degrees outside. Maybe spring is here at last...
I was feeling pretty good when we were in Florida, I'd had two weeks off the Samento since I knew I was going away and it just showed how much better I am. Sometimes when I'm taking Samento and it produces all the crazy herx symptoms it seems that I still have a really long way to go, but to take a break from it and feel so much better is very reassuring because it really does show that it is the herxing that makes me feel so bad and I really am way better.
So this week I'm back on the strong Samento dose again (along with all the other abx and supplements that I always take) and the herxing is back, although it's not as bad at the moment. Sometimes it seems to build up over the week that I take it, but I'm hoping that since I had such major reactions the last time this time it will be less. If that's the case, I'll just have to take an even stronger dose next time, but it would definitely be a sign of some major progress.
Some pics from Florida:
The view from our friends' garden:
Me standing in a Banyan tree at St. Pete's
Banyan trees at St. Pete's
Friday, April 1, 2011
Herx-ing and healing
Well, this last week has been pretty eventful Lyme-wise. I'm planning to fly home to Scotland at the end of June/ beginning of July and I really want to be feeling good when that time comes. I am really looking forward to going home and getting on with things, but there will be a lot to do and I want to be able to manage it all. At the moment I am still so tired and my energy levels are so low and I have other random symptoms flaring up and down all the time - I know that most of that is actually due to the herx-ing and the healing rather than the actual illness now but I would still like to hurry this healing along!
In attempt to do that I've been "pulsing" with the Samento on and off over the past month. I take a high dose of Samento for a week and then have a week off and it is producing the strangest reactions I have experienced. I definitely think it's working because I'm basically going through what feels like a week of hell and then I feel like I have taken another step forward - and each time I feel better than I felt before. But the herx-ing is really horrid. Last week it was my joints. It started off just as a kind of ache in my left hip and then one day when I put weight on my left leg it felt as if my hip was going to pop out of its socket - I was hobbling around clinging on to things again which was a very unpleasant flashback to a few years ago. Then the pain spread deeper into my hip and every so often I would get this burning feeling right into my bone that would make me break out in a cold sweat and feel really nauseous and then it would ease off. Then it travelled down my leg into my knee and ankle... then my right leg joined in. It was pretty awful. I had a hot clay bath which is supposed to draw out toxins (as clay is an adsorbent) and this seemed to draw the pain into my muscles - when I got out the bath they were so tight I couldn't straighten my legs. Then over the next few hours it all eased off.
As usual, I've been reading lots of Lyme articles and I came across one that suggested that as the Lyme moves from acute to disseminated, one of the first places it migrates to is the joints. This would fit with my doctor saying I am reaching the deepest layers of infection if I am getting symptoms at what might have been among the first areas to become infected... so it seems that perhaps I am killing off the bacteria and it is all moving out of my joints! Pretty horrible, but I'd rather it was dying off and getting cleared out than staying there.
So while all this is going on I have just been feeling wiped out again. I really feel that when my body is dealing with all of this all it wants to do is rest. I lie in bed (or on the sofa) and think about doing things and then as soon as I get up and move around, my body is screaming at my to lie back down again. Although sometimes I think it should, it's not really making me feel miserable because (although I'm definitely not enjoying the pain) I am seeing improvement pretty quickly and I really feel like this is something I just have to let my body work through. I am hurrying it along as much as I can - I am drinking lots of water and taking some detox supplements, lots of antioxidants, vegetables, very little sugar and I can't really do much more than that to support my body's healing process.
Unfortunately patience is key, and I think I've actually developed some of that in recent years!!
In among that I have done a few fun things this week too. Today we went to the mall for one of Macy's amazing "one day sales" (that actually last 2 days). A little bit of retail therapy is always helpful!
Yesterday I went for my "body work" treatment. I see a kind of massage therapist who does a bit of a combination of cranio-sacral therapy, myofascial massage and lymphatic drainage/ flushing massage and it seems to help. I have an old gymnastics neck injury (from when someone landed on my head while I was sitting in the splits) that bothers me and apparently Lyme aggravates scar tissue, so old injuries can become painful again. A doctor suggested that my headaches were being made worse by this old injury and I went to see this therapist for the first time about a year ago. I really didn't expect it to have an immediate effect, but after my first treatment my headaches improved almost instantly. It was amazing. So I have continued to see him every month or two and it has definitely been helping me. It's not really enjoyable massage though, sometimes it can be, but yesterday he did a "flush" which is supposed to help clear out toxins and I spent most of the time trying not to think about how sick I was feeling. I know that's a sign that the toxins are all being stirred up though and after a few hours I always feel much better, so it's just a short period of suffering for some more improvement!
Earlier in the week I repotted my little seedlings. I grew vegetables last year and discovered I really love gardening, so I decided to start a bit earlier this year in the hope I might get some ripe veggies before I head home in the summer. Unfortunately the weather is not cooperating! Last March the weather was beautiful - we actually sat out on the deck the last week in March. Tonight there is snow forecast. I am SO ready for spring!
So this has meant that my poor little seedlings have totally outgrown their seed trays and have had to be re-potted indoors - obviously some stuff has to stay indoors until it gets much warmer, but I have some peas and lettuce and winter squash that has had to be saved from the freezing temperatures - as a result our sunroom looks a bit like a greenhouse!
I am not really very good at picking the strongest seedlings and killing the others. It feels so cruel. So I have just re-potted everything (again!) and plan to give some plants away (again!). I did start some seeds in a cardboard seed starter and they have really not done well so - sadly - they were not re-potted. However, pulling them out and throwing them away seemed very cruel so I have just put them outside and hope that nature (i.e. the snow) will take care of them. I did tell them if any of them survive then I will consider them strong enough and pot them up....
Here is me and my little seedlings, taken over the sunroom/ greenhouse:
I also have some flower seedlings that really should go straight into the ground soon. My poor sunflower seedlings are way too big for their little cells and I have now got pots to put them in so I think that will be tomorrow's task!
And hopefully we will soon get some nice spring sunshine to enjoy!
In attempt to do that I've been "pulsing" with the Samento on and off over the past month. I take a high dose of Samento for a week and then have a week off and it is producing the strangest reactions I have experienced. I definitely think it's working because I'm basically going through what feels like a week of hell and then I feel like I have taken another step forward - and each time I feel better than I felt before. But the herx-ing is really horrid. Last week it was my joints. It started off just as a kind of ache in my left hip and then one day when I put weight on my left leg it felt as if my hip was going to pop out of its socket - I was hobbling around clinging on to things again which was a very unpleasant flashback to a few years ago. Then the pain spread deeper into my hip and every so often I would get this burning feeling right into my bone that would make me break out in a cold sweat and feel really nauseous and then it would ease off. Then it travelled down my leg into my knee and ankle... then my right leg joined in. It was pretty awful. I had a hot clay bath which is supposed to draw out toxins (as clay is an adsorbent) and this seemed to draw the pain into my muscles - when I got out the bath they were so tight I couldn't straighten my legs. Then over the next few hours it all eased off.
As usual, I've been reading lots of Lyme articles and I came across one that suggested that as the Lyme moves from acute to disseminated, one of the first places it migrates to is the joints. This would fit with my doctor saying I am reaching the deepest layers of infection if I am getting symptoms at what might have been among the first areas to become infected... so it seems that perhaps I am killing off the bacteria and it is all moving out of my joints! Pretty horrible, but I'd rather it was dying off and getting cleared out than staying there.
So while all this is going on I have just been feeling wiped out again. I really feel that when my body is dealing with all of this all it wants to do is rest. I lie in bed (or on the sofa) and think about doing things and then as soon as I get up and move around, my body is screaming at my to lie back down again. Although sometimes I think it should, it's not really making me feel miserable because (although I'm definitely not enjoying the pain) I am seeing improvement pretty quickly and I really feel like this is something I just have to let my body work through. I am hurrying it along as much as I can - I am drinking lots of water and taking some detox supplements, lots of antioxidants, vegetables, very little sugar and I can't really do much more than that to support my body's healing process.
Unfortunately patience is key, and I think I've actually developed some of that in recent years!!
In among that I have done a few fun things this week too. Today we went to the mall for one of Macy's amazing "one day sales" (that actually last 2 days). A little bit of retail therapy is always helpful!
Yesterday I went for my "body work" treatment. I see a kind of massage therapist who does a bit of a combination of cranio-sacral therapy, myofascial massage and lymphatic drainage/ flushing massage and it seems to help. I have an old gymnastics neck injury (from when someone landed on my head while I was sitting in the splits) that bothers me and apparently Lyme aggravates scar tissue, so old injuries can become painful again. A doctor suggested that my headaches were being made worse by this old injury and I went to see this therapist for the first time about a year ago. I really didn't expect it to have an immediate effect, but after my first treatment my headaches improved almost instantly. It was amazing. So I have continued to see him every month or two and it has definitely been helping me. It's not really enjoyable massage though, sometimes it can be, but yesterday he did a "flush" which is supposed to help clear out toxins and I spent most of the time trying not to think about how sick I was feeling. I know that's a sign that the toxins are all being stirred up though and after a few hours I always feel much better, so it's just a short period of suffering for some more improvement!
Earlier in the week I repotted my little seedlings. I grew vegetables last year and discovered I really love gardening, so I decided to start a bit earlier this year in the hope I might get some ripe veggies before I head home in the summer. Unfortunately the weather is not cooperating! Last March the weather was beautiful - we actually sat out on the deck the last week in March. Tonight there is snow forecast. I am SO ready for spring!
So this has meant that my poor little seedlings have totally outgrown their seed trays and have had to be re-potted indoors - obviously some stuff has to stay indoors until it gets much warmer, but I have some peas and lettuce and winter squash that has had to be saved from the freezing temperatures - as a result our sunroom looks a bit like a greenhouse!
I am not really very good at picking the strongest seedlings and killing the others. It feels so cruel. So I have just re-potted everything (again!) and plan to give some plants away (again!). I did start some seeds in a cardboard seed starter and they have really not done well so - sadly - they were not re-potted. However, pulling them out and throwing them away seemed very cruel so I have just put them outside and hope that nature (i.e. the snow) will take care of them. I did tell them if any of them survive then I will consider them strong enough and pot them up....
Here is me and my little seedlings, taken over the sunroom/ greenhouse:
My tomato seedlings:
My seedlings taking over the windowsills:
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