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*My partial recovery is more accurate
Update:
I am still noticably improved and still suggest this a year later. Hope this helpful
Original:
So I’ve decided to create a post outlining my journey and partial recovery with CFS/ME in hopes it will be helpful for people on here. Luckily, compared to some of you, I have a mild to medium case, wasn’t bed ridden, and was able to live my life in a normalish fashion.It has been a long road but as of this year I am 75-95% recovered from a disease I thought had ruined my adult life through FMT (fecal microbiome transplants). So let me tell you: there is hope.
Background
Let me give you all some background.
I was traveling abroad for 6 months on a world tour in 2014, a trip I had saved years for, when I got a strange and intense infection (which possibly was mono/EBV but I am still not sure). I took antibiotics before I realized it was likely viral in nature. I recovered after about 6 weeks and returned home a few months later. However, when I returned, it felt like I was super jetlagged, but instead of getting better things got progressively worse. After several months and being convinced I had multiple sclerosis, I finally figured out it was CFS/ME.
While I didn’t realize the seriousness then, without a doubt and like a lot of people on here, CFS is the worst thing that has ever happened to me: CFS forced me to take months off from grad school; made it take months to find a job when I finally graduated; and then would play a role in losing said job several years later. CFS helped destroy several important romantic relationships, one which I thought would end in marriage. CFS put a strain on friendships and made everything seem harder, like swimming through molasses.
The symptoms are fairly typical. My memory became completely shot. It was hard to learn new information (and this is coming from someone with 2 masters/post-grad degrees). Everything was infinitely less enjoyable when sick. Intense exercise would wreck the next several days. The muscle pain and spasticity in my neck was almost constant. When things were bad I would find it hard focusing my eyes and/or I would find it hard to resist the need to go to sleep immediately. The disease was insidious and schizophrenic: some days I would be almost fine, acting like I was before I got sick. Other times when I had bad attacks, I would be forced to take time off work and stay mostly in bed all day.
For better or worse, I made a promise to myself when I first figured out what was happening and that I didn’t have MS, that I wouldn’t let the disease beat me, and in doing so I would try and power through when things would get rough, continuing to live my life like I had. That resolve both kept me going but also hid how sick I truly was. Very few people were around me enough to realize...because when shit was bad, I just would spend days alone. No one truly understood it, but I can’t blame them...it even took me years to get a handle on it myself.
I could go on but I am sure if anyone understands it would be people with the disease.
The Treatments
From 2014 to 2019, I tried almost everything with mixed but mostly minor success and the typical doctor pushback. I am a medical lab scientist and software engineer and so a lot of the research and treatments were discovered and tried on my own.
-I got on anti-depressants, specifically wellbutron. This was helpful and I would suggest them.-I got on anti-virals, specifically valcyclovir, which seemed helpful for a few months but I am unsure whether that was placebo or not-I did multiple water only fasts. These are hard to do and therefore it isn’t a long term solution but this was the first thing that truly helped me. 4-7 days seemed to be the sweet spot. 3 was too few, 10 way too many.-I tried ketamine treatments for depression/inflammation. These were about as fun as they sounded, yet had no lasting effects-I tried various diets. Nothing seemed to correlate-I tried ritalin. This made things worse.-I tried modafinol. This seemed to work wonders for a few times but lost effectiveness quickly.-I massively increased my water intake, using electrolyte tablets. (Multiple liters a day). This helped a lot and I still do this. I use NUUN tablets...you can find them on amazon-I live in Colorado so luckily have access to CBD ointments, which are marginally helpful-I tried a muscle relaxant for sleep and the muscle spasticity, specifically tizzanidine. This had been the most helpful medication and I would recommend it-Ice packs on my neck when shit gets bad is somewhat helpful-Massage is helpful for the spasticity but was always just a band aid
I am sure I have tried even more, but let me get to the punchline: finally I decided to run a microbiome analysis on myself and found the first test that was highly abnormal. With that information, it seemed clear: I needed FMT.
The Cure
Naturally, the US is far behind in the field so I was forced to go abroad. In February of this year, I went to the Taymount Clinic in the UK https://taymount.com/, which has a 10 day course and is said to help treat CFS/ME among other things, such as CDiff and Ulcerative Colitis. I woke up before my alarm on the 3rd day, something that hadn’t happened since before I got sick and i felt different. Everything was clearer, the pain less and I felt like I could think again. By the end of the treatment, I legitimately felt cured, something I never expected. (Note: I have no connection with the clinic beyond being a patient and honestly I have absolutely nothing but glowing things to say about them.)
Since then, the symptoms have come back slowly, and it seems like I need a new treatment about every 6 weeks, which I can now do on my own at home. I am hoping this will eventually extend until I don't need them anymore, but this is where I am at now.
Most people believe FMT to be pretty insane (as a medtech I don't), but at least I have found what I believe is the actual cause (at least for me) of my CFS (antibiotics wiping out good gut flora and replacing it with pathogenic flora + a latent viral infection permanently aggravating the immune system) and now a legitimate treatment for it.
As pointed out below, here is the article that made me decide to get a microbiome analysis and go down the path towards FMT: https://microbiomejournal.biomedcentral.com/articles/10.1186/s40168-016-0171-4
Anyway, I hope that is helpful for people. Good luck out there.
Edit:
-You can see all the costs and associated questions on their website: https://taymount.com/. The 10 day treatment is 4000 pounds. It is expensive, especially including travel expenses if not from the UK, but for a disease like this, it is worth it. I used a 0% apr credit card and then paid it off monthly. You have to schedule a consultation first, which is an hour long. They also won't treat anyone: you have to be a good candidate, which if you have CFS you are.
-I used https://ubiome.com/ for the analysis. My profile matched the abnormal profile found in the above article
-Finally, I don't really get why this is controversial. This is literally my experience and I wrote it to be helpful as a reference for treatment options and to hopefully give some people with CFS some optimism that it can get better.
Original 05 Aug 2019 (52 comments). 4 more comments.
Update:
I am still noticably improved and still suggest this a year later. Hope this helpful
Original:
So I’ve decided to create a post outlining my journey and partial recovery with CFS/ME in hopes it will be helpful for people on here. Luckily, compared to some of you, I have a mild to medium case, wasn’t bed ridden, and was able to live my life in a normalish fashion.It has been a long road but as of this year I am 75-95% recovered from a disease I thought had ruined my adult life through FMT (fecal microbiome transplants). So let me tell you: there is hope.
Background
Let me give you all some background.
I was traveling abroad for 6 months on a world tour in 2014, a trip I had saved years for, when I got a strange and intense infection (which possibly was mono/EBV but I am still not sure). I took antibiotics before I realized it was likely viral in nature. I recovered after about 6 weeks and returned home a few months later. However, when I returned, it felt like I was super jetlagged, but instead of getting better things got progressively worse. After several months and being convinced I had multiple sclerosis, I finally figured out it was CFS/ME.
While I didn’t realize the seriousness then, without a doubt and like a lot of people on here, CFS is the worst thing that has ever happened to me: CFS forced me to take months off from grad school; made it take months to find a job when I finally graduated; and then would play a role in losing said job several years later. CFS helped destroy several important romantic relationships, one which I thought would end in marriage. CFS put a strain on friendships and made everything seem harder, like swimming through molasses.
The symptoms are fairly typical. My memory became completely shot. It was hard to learn new information (and this is coming from someone with 2 masters/post-grad degrees). Everything was infinitely less enjoyable when sick. Intense exercise would wreck the next several days. The muscle pain and spasticity in my neck was almost constant. When things were bad I would find it hard focusing my eyes and/or I would find it hard to resist the need to go to sleep immediately. The disease was insidious and schizophrenic: some days I would be almost fine, acting like I was before I got sick. Other times when I had bad attacks, I would be forced to take time off work and stay mostly in bed all day.
For better or worse, I made a promise to myself when I first figured out what was happening and that I didn’t have MS, that I wouldn’t let the disease beat me, and in doing so I would try and power through when things would get rough, continuing to live my life like I had. That resolve both kept me going but also hid how sick I truly was. Very few people were around me enough to realize...because when shit was bad, I just would spend days alone. No one truly understood it, but I can’t blame them...it even took me years to get a handle on it myself.
I could go on but I am sure if anyone understands it would be people with the disease.
The Treatments
From 2014 to 2019, I tried almost everything with mixed but mostly minor success and the typical doctor pushback. I am a medical lab scientist and software engineer and so a lot of the research and treatments were discovered and tried on my own.
-I got on anti-depressants, specifically wellbutron. This was helpful and I would suggest them.-I got on anti-virals, specifically valcyclovir, which seemed helpful for a few months but I am unsure whether that was placebo or not-I did multiple water only fasts. These are hard to do and therefore it isn’t a long term solution but this was the first thing that truly helped me. 4-7 days seemed to be the sweet spot. 3 was too few, 10 way too many.-I tried ketamine treatments for depression/inflammation. These were about as fun as they sounded, yet had no lasting effects-I tried various diets. Nothing seemed to correlate-I tried ritalin. This made things worse.-I tried modafinol. This seemed to work wonders for a few times but lost effectiveness quickly.-I massively increased my water intake, using electrolyte tablets. (Multiple liters a day). This helped a lot and I still do this. I use NUUN tablets...you can find them on amazon-I live in Colorado so luckily have access to CBD ointments, which are marginally helpful-I tried a muscle relaxant for sleep and the muscle spasticity, specifically tizzanidine. This had been the most helpful medication and I would recommend it-Ice packs on my neck when shit gets bad is somewhat helpful-Massage is helpful for the spasticity but was always just a band aid
I am sure I have tried even more, but let me get to the punchline: finally I decided to run a microbiome analysis on myself and found the first test that was highly abnormal. With that information, it seemed clear: I needed FMT.
The Cure
Naturally, the US is far behind in the field so I was forced to go abroad. In February of this year, I went to the Taymount Clinic in the UK https://taymount.com/, which has a 10 day course and is said to help treat CFS/ME among other things, such as CDiff and Ulcerative Colitis. I woke up before my alarm on the 3rd day, something that hadn’t happened since before I got sick and i felt different. Everything was clearer, the pain less and I felt like I could think again. By the end of the treatment, I legitimately felt cured, something I never expected. (Note: I have no connection with the clinic beyond being a patient and honestly I have absolutely nothing but glowing things to say about them.)
Since then, the symptoms have come back slowly, and it seems like I need a new treatment about every 6 weeks, which I can now do on my own at home. I am hoping this will eventually extend until I don't need them anymore, but this is where I am at now.
Most people believe FMT to be pretty insane (as a medtech I don't), but at least I have found what I believe is the actual cause (at least for me) of my CFS (antibiotics wiping out good gut flora and replacing it with pathogenic flora + a latent viral infection permanently aggravating the immune system) and now a legitimate treatment for it.
As pointed out below, here is the article that made me decide to get a microbiome analysis and go down the path towards FMT: https://microbiomejournal.biomedcentral.com/articles/10.1186/s40168-016-0171-4
Anyway, I hope that is helpful for people. Good luck out there.
Edit:
-You can see all the costs and associated questions on their website: https://taymount.com/. The 10 day treatment is 4000 pounds. It is expensive, especially including travel expenses if not from the UK, but for a disease like this, it is worth it. I used a 0% apr credit card and then paid it off monthly. You have to schedule a consultation first, which is an hour long. They also won't treat anyone: you have to be a good candidate, which if you have CFS you are.
-I used https://ubiome.com/ for the analysis. My profile matched the abnormal profile found in the above article
-Finally, I don't really get why this is controversial. This is literally my experience and I wrote it to be helpful as a reference for treatment options and to hopefully give some people with CFS some optimism that it can get better.
Original 05 Aug 2019 (52 comments). 4 more comments.
- FMT Clinics
- I included all required info