Vanessa Li asked me to write a blogpost about my bacterial implant. I feel sad that she will never read it and never get help from such a treatment.
Here goes:
My microbiome and me
Short version
I was a colic baby and was tested for E. coli. I didn´t have any, which means that my microbiota propably started out completely wrong – and then it propably continued even wronger. I am diagnosed with ME but cannot pinpoint an exact moment I got it, I am one of those who had an illness slowly developing.
At Karolinska hospital in Sweden they have for more than twenty years experimented with a bacterial culture from a healthy woman. Seven years ago I received an implant of this for the first time. I became very energetic and my skin was soo smooth. Unfortunately I followed the doctors advice and ate whatever, then I had swine flu and went through some stress. After the swine flu I became worse.
This year I had an implant again. The doctors have changed their advice and now say "eat a lot of cabbage". I became more energetic; approximately doubled my level of activity, but since it was so low to start with it means I am still pretty ill. The doctor said he had another ME-patient, and for her the only difference was her bowels.
Long version
My life has been an up and down of illness. As a child I had a lot of atopic eczema, which was treated with antibiotics. The antibiotics didn´t work, so then they gave me a bit more.
As an adult my symptoms were sudden drowsiness and inability to concentrate, depression, muscle pain, insomnia, eczema, strange pains here and there, extra fatigue after excercise. I believed I would never marry and have children due to my illness. During some periods I was almost healthy. I experimented with diets and supplements. I have one child.
During pregnancy I was extremely depressed. I could not even watch the news since everything affected me. The depression lifted immediately after birth, but I had terrible insomnia, felt sort of drunk all the time and had a lot of muscle pain. The pregnancy was hard on my body.
Sauerkraut
I was so ill I couldn´t work any more. I chatted on health sites on internet and found the suggestion of eating sauerkraut fermented with lactic acid bacteria. I made sauerkraut unsuccesfully three times before I finally managed to make a succesful batch. And it really helped! After some experimenting I found that for me the best was to use "effective microbes" (E.M.) as starter culture. It has recently been shown that a persons microbiome quickly sets it mark on the room the person are in. And fermented vegetables started in one and the same house yet turn out completely different when moved to another house. So I guess that for us who really really have problems with our microbiome and really really need succesful sauerkraut; exactly us will have extra problems making it!
I ate only sauerkraut and meat and fish for about two years. As long as I kept to the diet I wasn´t so bad, but it was a bit difficult socially and very boring. The sauerkraut tastes better when fried a bit or added to soups, but still ...
All my symptoms improved. Sometimes I also experimented with probiotics. Whenever I took about ten times the normal dosage I was quite energetic, my brain cleared up, pain went away etc.
First implant
The implant was done with colonoscopy – a very painful prosedure! Immediately I became very energetic.
I tried eating starch and sugar again, believing all was in the microbiome. Soon I got a really strong urge to eat sugary foods and I just couldn´t stop. I felt like a drug addict, but my drug was sugar. Most of my symptoms came back, although not quite as strong. Finally I managed to stop eating all this starchy foods. I went back to a strict diet, but this time with less sauerkraut. It worked OK with only green vegetables, meat and fish and some sauerkraut. I wasn´t healthy, but I didn´t have much pain.
Swine flu and stress
The decision wether I would take the swine flu vaccine or not was taken for me. The week before the vaccine program started in my neighbourhood I fell ill with the flu. During the illness I took a lot of probiotics – really a lot. After the swineflu I was still very week. I was at this time divorced, and I was so ill I thought that if I didn´t get better my child would have to move to my ex. I barely managed the basic homework and didn´t talk much with my child. Thankfully during this period she had no special problems and many friends.
After approximately one year, suddenly on New Years Eve, it was as if something lifted. I was still ill, but could start careful excercise.
My fatigue is still worse than before the swine flu.
The summer 2011 there was a terrorist attack and more than 70 youth were killed in my country. Although I didn´t know anyone personally, I became totally obesessed with what happened and read everything about it. This stressed me a lot. I am certain it made me worse. I believe that this stressed my adrenals. I believe I had really weak adrenals already and that I in a previous period of my life had the same problem but managed to rebuild my adrenals to a certain extent. I do have some test results to prove it, but it is mostly speculation.
It is hard to say what is the illness taking its course, things that would have happened anyway, and how much circumstances affect course the illness.
New implant
Autumn 2014 I had an implant again of the same culture from Karolinska. Right before the implant my activity level was approximately like this: I was better than the last year, but still not able to manage my small life. I barely talked with my daughter, and the house was a constant mess. I went out once a week to buy food and sometimes go to the library. I met friends for a coffee date maybe every second month or so. Most of my social life was on facebook.
After my implant my activity level approximataly doubled. That is: I was able to talk with my daughter more and watch films with her on the computer. I could go shopping for food and still wash the dishes in the evening, instead of going shopping and then staying in bed all day the day after. I visited a friend at her office although I have to take the bus a few stops. After Christmas eve instead of staying the week in bed, I managed to go out several times.
Diet
The last years I have more or less eaten only greens and meet to stay well, but I can´t manage to follow the diet rigorously. With the new implant I relaxed a bit more with the diet. I tolerate much more starch and sugar.
Hot flashes
One of my symptoms is hot flashes. It is propably more than twenty years ago I first had hot flashes. Everything that stresses my adrenals make them worse: Coffee and the like, black pepper, ginger or other spices that gives a boost, sugar and starch in eccess. The last two years I have in addition been going through the change, and so have been extra sensitive. Finally, right before the new implant was due, I realised that some chewing gum I use to eat contains endocrine disruptors. Immediately I stopped chewing and the hot flashes became smaller and more managable. Before they totally disappeared I had the implant.
With the implant came again an urge to eat sweets. Maybe psychological, because I had been looking forward to eating more varied, or maybe it was because I had PMS. I had believed I had finished with this s* , but the implant apparently set my hormones going again. I didn´t have my period for a half year, then with the implant my period came back, and with it a very strong urge to eat sugary foods during the PMS period. My period has been regular since the implant. Whenever I have my period I get very exhausted. And the hot flashes starts again.
It seems that magnesium and chrome also helps against having this strong urge for sugar. I started taking foot bath in magnesium sulphate twice daily and take more magnesium l threonate.
LDN, allergies and cold sores
I have taken LDN for about five years and it seems to help against allergies, makes me less drowsy and gives better concentration and keeps the cold sores to a minimum. I was very happy when I could eat pork again after twenty years without. Since I stopped taking LDN several times during these years, and each time my allergies, drowsiness and cold sores came back, I am pretty certain LDN helps against this. There is some proof that LDN affects the white blood cells, which is something the researchers are looking into as skewed in people with ME.
It doesn´t seem to help me much with energy.
After the new implant
Because of all these disruptions it has taken some time before I could really enjoy the energy boost my new implant has given me.
I have approximately doubled my activity level, or maybe a bit more. This means that I manage to shop and cook, wash the dishes and tidy up and wash clothes for me and my daughter. She cleans the floors. I manage to talk more with my daughter and I also meet other people for tea dates in quiet cafes near by, so I am less lonely.
However it does not seem to have helped for other symptoms.
I still have various allergies and must be careful. I must continue to eat a low-oxalate diet if I want to avoid itching, running to the bathroom and having pain. Starchy foods also gives me pain, headaches and low concentration, but I tolerate more of them than before. It is difficult to find the right level. I still take footbath in magnesium sulphate and in addition it seems to me I get worse whenever i skip my multivitamins, my extra vitamin B5 for the adrenals and my magnesium l-threonate. I also take LDN and levaxin.
And although I have less fatigue, it is still worse than before I had swine flu.
To speculate: Is this because my illness has affected my body too much and I can never get better than this?
Is this because it was not a perfect implant, it is after all from a culture? Do I need some other bacteria not existing in this implant?
Do I have some bacteria or virus in me that affects me whatever I do? Or is it not he bacteria itself but something with those bacteria that affects med negatively? In the same way that bacteria living next to drug resistant bacteria quickly pick up the drug resistant genes and themselves become drug resistant. Has something like that happened to my bacteria?
I am really looking forward to dr Lipkins research and I am sorry the publishing system is so slow. I hope we wil hear the most useful results in a year or so.
http://www.ncbi.nlm.nih.gov/pubmed/25647777 People with ME have early menopause
The culture from Karolinska in Stockholm, Sweden http://ki.se/en/mtc/elisabeth-norin-group
http://www.google.com/patents/US20140255351
Magnesium l threonate: goes to the brain and doesn´t affect the stomach. http://www.nature.com/news/testing-magnesium-s-brain-boosting-effects-1.11665
Here goes:
My microbiome and me
Short version
I was a colic baby and was tested for E. coli. I didn´t have any, which means that my microbiota propably started out completely wrong – and then it propably continued even wronger. I am diagnosed with ME but cannot pinpoint an exact moment I got it, I am one of those who had an illness slowly developing.
At Karolinska hospital in Sweden they have for more than twenty years experimented with a bacterial culture from a healthy woman. Seven years ago I received an implant of this for the first time. I became very energetic and my skin was soo smooth. Unfortunately I followed the doctors advice and ate whatever, then I had swine flu and went through some stress. After the swine flu I became worse.
This year I had an implant again. The doctors have changed their advice and now say "eat a lot of cabbage". I became more energetic; approximately doubled my level of activity, but since it was so low to start with it means I am still pretty ill. The doctor said he had another ME-patient, and for her the only difference was her bowels.
Long version
My life has been an up and down of illness. As a child I had a lot of atopic eczema, which was treated with antibiotics. The antibiotics didn´t work, so then they gave me a bit more.
As an adult my symptoms were sudden drowsiness and inability to concentrate, depression, muscle pain, insomnia, eczema, strange pains here and there, extra fatigue after excercise. I believed I would never marry and have children due to my illness. During some periods I was almost healthy. I experimented with diets and supplements. I have one child.
During pregnancy I was extremely depressed. I could not even watch the news since everything affected me. The depression lifted immediately after birth, but I had terrible insomnia, felt sort of drunk all the time and had a lot of muscle pain. The pregnancy was hard on my body.
Sauerkraut
I was so ill I couldn´t work any more. I chatted on health sites on internet and found the suggestion of eating sauerkraut fermented with lactic acid bacteria. I made sauerkraut unsuccesfully three times before I finally managed to make a succesful batch. And it really helped! After some experimenting I found that for me the best was to use "effective microbes" (E.M.) as starter culture. It has recently been shown that a persons microbiome quickly sets it mark on the room the person are in. And fermented vegetables started in one and the same house yet turn out completely different when moved to another house. So I guess that for us who really really have problems with our microbiome and really really need succesful sauerkraut; exactly us will have extra problems making it!
I ate only sauerkraut and meat and fish for about two years. As long as I kept to the diet I wasn´t so bad, but it was a bit difficult socially and very boring. The sauerkraut tastes better when fried a bit or added to soups, but still ...
All my symptoms improved. Sometimes I also experimented with probiotics. Whenever I took about ten times the normal dosage I was quite energetic, my brain cleared up, pain went away etc.
First implant
The implant was done with colonoscopy – a very painful prosedure! Immediately I became very energetic.
I tried eating starch and sugar again, believing all was in the microbiome. Soon I got a really strong urge to eat sugary foods and I just couldn´t stop. I felt like a drug addict, but my drug was sugar. Most of my symptoms came back, although not quite as strong. Finally I managed to stop eating all this starchy foods. I went back to a strict diet, but this time with less sauerkraut. It worked OK with only green vegetables, meat and fish and some sauerkraut. I wasn´t healthy, but I didn´t have much pain.
Swine flu and stress
The decision wether I would take the swine flu vaccine or not was taken for me. The week before the vaccine program started in my neighbourhood I fell ill with the flu. During the illness I took a lot of probiotics – really a lot. After the swineflu I was still very week. I was at this time divorced, and I was so ill I thought that if I didn´t get better my child would have to move to my ex. I barely managed the basic homework and didn´t talk much with my child. Thankfully during this period she had no special problems and many friends.
After approximately one year, suddenly on New Years Eve, it was as if something lifted. I was still ill, but could start careful excercise.
My fatigue is still worse than before the swine flu.
The summer 2011 there was a terrorist attack and more than 70 youth were killed in my country. Although I didn´t know anyone personally, I became totally obesessed with what happened and read everything about it. This stressed me a lot. I am certain it made me worse. I believe that this stressed my adrenals. I believe I had really weak adrenals already and that I in a previous period of my life had the same problem but managed to rebuild my adrenals to a certain extent. I do have some test results to prove it, but it is mostly speculation.
It is hard to say what is the illness taking its course, things that would have happened anyway, and how much circumstances affect course the illness.
New implant
Autumn 2014 I had an implant again of the same culture from Karolinska. Right before the implant my activity level was approximately like this: I was better than the last year, but still not able to manage my small life. I barely talked with my daughter, and the house was a constant mess. I went out once a week to buy food and sometimes go to the library. I met friends for a coffee date maybe every second month or so. Most of my social life was on facebook.
After my implant my activity level approximataly doubled. That is: I was able to talk with my daughter more and watch films with her on the computer. I could go shopping for food and still wash the dishes in the evening, instead of going shopping and then staying in bed all day the day after. I visited a friend at her office although I have to take the bus a few stops. After Christmas eve instead of staying the week in bed, I managed to go out several times.
Diet
The last years I have more or less eaten only greens and meet to stay well, but I can´t manage to follow the diet rigorously. With the new implant I relaxed a bit more with the diet. I tolerate much more starch and sugar.
Hot flashes
One of my symptoms is hot flashes. It is propably more than twenty years ago I first had hot flashes. Everything that stresses my adrenals make them worse: Coffee and the like, black pepper, ginger or other spices that gives a boost, sugar and starch in eccess. The last two years I have in addition been going through the change, and so have been extra sensitive. Finally, right before the new implant was due, I realised that some chewing gum I use to eat contains endocrine disruptors. Immediately I stopped chewing and the hot flashes became smaller and more managable. Before they totally disappeared I had the implant.
With the implant came again an urge to eat sweets. Maybe psychological, because I had been looking forward to eating more varied, or maybe it was because I had PMS. I had believed I had finished with this s* , but the implant apparently set my hormones going again. I didn´t have my period for a half year, then with the implant my period came back, and with it a very strong urge to eat sugary foods during the PMS period. My period has been regular since the implant. Whenever I have my period I get very exhausted. And the hot flashes starts again.
It seems that magnesium and chrome also helps against having this strong urge for sugar. I started taking foot bath in magnesium sulphate twice daily and take more magnesium l threonate.
LDN, allergies and cold sores
I have taken LDN for about five years and it seems to help against allergies, makes me less drowsy and gives better concentration and keeps the cold sores to a minimum. I was very happy when I could eat pork again after twenty years without. Since I stopped taking LDN several times during these years, and each time my allergies, drowsiness and cold sores came back, I am pretty certain LDN helps against this. There is some proof that LDN affects the white blood cells, which is something the researchers are looking into as skewed in people with ME.
It doesn´t seem to help me much with energy.
After the new implant
Because of all these disruptions it has taken some time before I could really enjoy the energy boost my new implant has given me.
I have approximately doubled my activity level, or maybe a bit more. This means that I manage to shop and cook, wash the dishes and tidy up and wash clothes for me and my daughter. She cleans the floors. I manage to talk more with my daughter and I also meet other people for tea dates in quiet cafes near by, so I am less lonely.
However it does not seem to have helped for other symptoms.
I still have various allergies and must be careful. I must continue to eat a low-oxalate diet if I want to avoid itching, running to the bathroom and having pain. Starchy foods also gives me pain, headaches and low concentration, but I tolerate more of them than before. It is difficult to find the right level. I still take footbath in magnesium sulphate and in addition it seems to me I get worse whenever i skip my multivitamins, my extra vitamin B5 for the adrenals and my magnesium l-threonate. I also take LDN and levaxin.
And although I have less fatigue, it is still worse than before I had swine flu.
To speculate: Is this because my illness has affected my body too much and I can never get better than this?
Is this because it was not a perfect implant, it is after all from a culture? Do I need some other bacteria not existing in this implant?
Do I have some bacteria or virus in me that affects me whatever I do? Or is it not he bacteria itself but something with those bacteria that affects med negatively? In the same way that bacteria living next to drug resistant bacteria quickly pick up the drug resistant genes and themselves become drug resistant. Has something like that happened to my bacteria?
I am really looking forward to dr Lipkins research and I am sorry the publishing system is so slow. I hope we wil hear the most useful results in a year or so.
http://www.ncbi.nlm.nih.gov/pubmed/25647777 People with ME have early menopause
The culture from Karolinska in Stockholm, Sweden http://ki.se/en/mtc/elisabeth-norin-group
http://www.google.com/patents/US20140255351
Magnesium l threonate: goes to the brain and doesn´t affect the stomach. http://www.nature.com/news/testing-magnesium-s-brain-boosting-effects-1.11665
