Very sorry to hear about the diagnosis and all the difficulties you are facing, Richard--as well as just the confusing world of Lyme overall. Must make the already difficult even harder. I wish you all the best and hope this doesn't keep you from getting out on the water.
Thank you for writing this Richard. I too know this journey. I used to test positive, but always second guessed whether I actually had it. I've had some success with a non-lyme treatment. Really hoping you find some solutions and relief.
Thank you. Lyme is a climate change winner and it's spreading to places and people (and doctors) who know nothing about it. Another coming issue is re-infection. The test is for antibodies, so once someone has had the disease, they'll always test positive (if the test works). There's no diagnostic test for re-infection.
You did two courses of antibiotics? How long? A few weeks each? This isn't long enough to treat established Lyme. Lyme can bury deep into tissues and develop protective biofilms. Conventional MDs will NOT properly treat this, you need an LLMD if you don't have one. Igenex offers better testing than Elisa or WB. Have you looked for other tick born disease? Lyme usually comes with other diseases. We should talk. https://www.corvallisadvocate.com/2021/bitten-a-personal-essay-by-marcie-wolf/ I'm on FB.
Richard, yes they are very short courses of antibiotics. Was the Doxycycline 100 or 200 mg a day?. I have Morgellons, which is thought to be a skin presentation of Lymes. Disease, as well as other symptoms. All my tests have been negative, including an immunoblot, all I know is I am gradually getting more unwell, tire really quickly. I go to London June to see Doctors who do believe in Morgellons, and not Delusional Parasitosis as it used to be thought to be. Not being believed is so destructive mentaclly..
I had 2 negative ELISA tests. Eventually, I paid for my own - it seemed the only reasonable explanation for the symptoms (as it had with the 1st 2 negative tests). It was positive. My Dr, to his credit, immediately tested again + the immunoblot and were positive. I assume the 2 negatives are explained by the 20%+ false negative/positives ELISA delivers.
I improved while taking the antibiotics but have reverted since.
Hi Richard, I read your article in the Lyme.org newsletter and looked you up here.
I am in Australia. I have Lyme, Bartonellosis and suspected Babesiosis. I have been sick for over 20 years. Australia completely denies the existence of Lyme Disease. I was tested through a German Lab. Armin Labs in Germany is the best in Europe to my knowledge. Igenex is in USA and also one of the best.
I am very concerned that you seem to think you have post Lyme Syndrome. The treatment you have received is extraordinarily insufficient for chronic Lyme. Amoxycillin is useless and only used for children under 12 for acute Lyme (due to possible teeth staining of Doxy). Doxycycline only treats spirochets but not cyst forms of Borrelia or biofilms.
I highly recommend that you find an experienced Lyme doctor and/or Naturopath. Also testing for co-infections is essential. Unfortunately none of this will be cheap. Personally I prefer herbal medicines. Stephen Buhner has a couple of excellent books on treating tick infections if you are interested.
Lyme & Co are a nightmare in every way. I am wishing you all the very best.
The Armin Labs have, in my mind, a red flag. They are offering a serological test for a neurological bacteria which is very hard to detect in blood. This is why the Elisa etc look for anti-bodies. Armin cites a Nature paper as an endorsement for their work. If you track the paper down to Nature you'll find it's been pulled. The reasons given are patient selection and using data from an unpublished/unreviewed paper. Some would say this amounts to cooking the books, although there may be other reasons. That they still cite it is worrying.
Thank you for writing about your experience with Lyme. I would like to hear about the symptoms that led to your gall bladder removal.
I had ( along with suspected Lyme ) abdominal pain and difficulty digesting fat. This made my doctor suspected a gall bladder problem. The pains and digestion issues moderated with time and my tests where negative.
Upper gut pains, and also scans that showed a gallbladder dealing with build-ups of the charmingly-named sludge. So it was removed and nothing changed. It would have had to go eventually, but premature removal did nothing for the Lyme disease.
This is definitely not enough treatment. To treat Lyme that's gone undiagnosed, you need a battery of different antibiotics and after that, something like disulfiram (yes, the drug used to treat alcoholism). Disulfiram was miraculous for me. And yes, even now, five years later, I have strange symptoms that kick up, and am about to embark on new treatment. The buggers sleep and hide, covered in biofilm, and it takes a long time to get rid of layers of spirochetes.
I'm reluctantly drawing the same conclusion. It's well dug in: During antibiotic treatment my blood pressure soared, prompting a greatly increased BP drug intervention by my Dr. Since then the bacteria re-established itself & my BP has fallen. So I'm now mostly off the meds. Weird.
Meanwhile, there's a 7 week wait round here to see a Doc.
Disulfiram? I've found the links to parasitic treatment. How does it work?
It's most likely that all the bacteria were not killed off. Different species of Borrelia (Lyme) require different antibiotics, and different ones again at different stages of treatment for people with long term, multisystemic infections. On top of that, it's quite possible that you were infected with bacteria other than 'Lyme' in the cocktails that the ticks gave you - for example, Ehrlichia, Bartonella, and Rickettsia, each with numerous species of their own and requiring different antibiotic approaches. You may also have been infected with a protozoa, Babesia, with the possibility of some parasitic worms and a virus or 2 in the mix as well. If you haven't already done this, consider going to the US to consult one of the experienced International Lyme and Associated Diseases MDs over there - they are the most expert in this field of medicine by a very long way.
Whoops - it should read 'International Lyme and Associated Diseases Society', but my Lyme brain missed out a word and then failed to spot it - apologies for that.
I have been reading Richard Horowitz's Lyme and Chronic Disease (he's in the Hudson Valley, NY). The book was recommended by a Dr friend of mine who knows a lot more than most. It's a weighty tome - in many ways! However, Horowitz lays out treatment regimes and I'm hoping I can get my local Dr along for the ride.
Whatever else, going to the US would be a lot quicker than a) trying to get in front of a Dr here, and b) staying in the room for long enough to persuade, in my case, him, to take on some new information.
Yes, a weighty tome! Stephen Phillips MD and Dana Parish's book 'Chronic: The Hidden Cause of the Autoimmune Pandemic and How to Get Healthy Again' is another good one to get hold of - he's an excellent Lyme literate MD, but not taking on new patients at the moment as far as I know. Daniel Cameron MD's book 'An Expert's Guide on Navigating Lyme Disease' is another good one (he may be taking on new patients at his clinic...).
Unfortunately NHS doctors are still very blinkered about these infections. It probably isn't worth the effort of trying to get an appointment and, as you say, you only get 5 minutes or so of their time. Apart from that, they don't have the expertise.
Oh good - I'm glad you're finding it useful! By the way, there is 1 doctor in the UK you could consider seeing - perhaps someone else may have suggested them to you already. Not via the NHS (of course...), but not as bank account-breaking as the US. I don't know if it's possible to message privately on here, but if so drop me a line and I can give you their name.
I've been saying for sometime that I think I have Lymes, it is now about 10 years. I am struggling to get a test; I am happy to pay privately but I cannot access the tests (I've rest Western Blot is the one I need) privately.
NTA health are an alternative naturopath which use saliva testing to amazing results (£140) They diagnose with a machine measuring the vibration of the cells and it is simply astonishing what it can find.
I don't know where you are geographically? In the US private testing is more widely available than in the UK.
In the UK www.medichecks.com for the Elisa is fast and easy to do. BUT the Elisa is at best flakey and a Western Immunoblot confirmation is very important - and harder to find. If yr Elisa is positive, call yr GP and tell them. Say NICE guidelines are that 'reasonable grounds for thinking you have Lyme requires them to treat immediately and then investigate further'. This should get you fast-track antibiotics, a 2nd Elisa and an immunoblot. Don't take no for an answer. I had 3 Elisas over about 6 years before I got a positive one. reckon on about 20% false negative/positive. If negative, do you remember a tick or a rash or blistering?
The next problem is that the NHS is largely clueless about treatment.
Thank you for writing this. Love that you worked for the bbc and are now being given hindsight into realising the political hot potato that lyme is. It seems to me that a lot of what needs to be aired isn’t which is why I love your piece? Many of us feel neglected by the GPs nhs and mps.
Thanks for sharing. I was diagnosed circa 1980 and have had a titanic boatload of antibiotics since then and am still sick. When you wrote, "I have been treated with 2 courses of antibiotics and it’s extremely unlikely that any of the bacteria have survived this onslaught." I thought...Oh boy! Is he in for a nasty surprise! I wish you well, but you have to change everything in your life to even get close to remission. Yes, remission, not cure. Clean up your diet to pristine. I mean zero added sugars, and eat organically produced foods whenever possible. Maintain exercise as you are able. Decrease and avoid stress. Sleep as much as you are able. Drink copious amounts of clean water. Take handfuls of a variety of probiotics. There's a good one in the UK called Optibac, For Those on Antibiotics, but add saccharomyces boulardii, a soil bacteria, and the usual lacto and bifido bacterias. Good luck to you!
And oh yes. Keep taking antibiotics. Get your doc to put you on a rotation of antibiotics to keep the critters from getting too comfortable with one. Do some kind of Tai chi/meditation, herbal treatments too and acupuncture. Throw everything you can at it!
Scary stuff Richard, and very bad luck. Let’s hope you mend 100%.
Very sorry to hear about the diagnosis and all the difficulties you are facing, Richard--as well as just the confusing world of Lyme overall. Must make the already difficult even harder. I wish you all the best and hope this doesn't keep you from getting out on the water.
Thank you. The challenge is getting the diagnosis. The rest should follow! Albeit slowly.
Thank you for writing this Richard. I too know this journey. I used to test positive, but always second guessed whether I actually had it. I've had some success with a non-lyme treatment. Really hoping you find some solutions and relief.
Thank you. Lyme is a climate change winner and it's spreading to places and people (and doctors) who know nothing about it. Another coming issue is re-infection. The test is for antibodies, so once someone has had the disease, they'll always test positive (if the test works). There's no diagnostic test for re-infection.
You did two courses of antibiotics? How long? A few weeks each? This isn't long enough to treat established Lyme. Lyme can bury deep into tissues and develop protective biofilms. Conventional MDs will NOT properly treat this, you need an LLMD if you don't have one. Igenex offers better testing than Elisa or WB. Have you looked for other tick born disease? Lyme usually comes with other diseases. We should talk. https://www.corvallisadvocate.com/2021/bitten-a-personal-essay-by-marcie-wolf/ I'm on FB.
Thanks. That's very constructive. 2 courses, 4 weeks each — Doxycycline 1st and then Amoxcyline. I'm in the UK and our Drs know even less than yours.
Igenex appears to be a company? Does the test have a name? I'll contact you directly.
Richard, yes they are very short courses of antibiotics. Was the Doxycycline 100 or 200 mg a day?. I have Morgellons, which is thought to be a skin presentation of Lymes. Disease, as well as other symptoms. All my tests have been negative, including an immunoblot, all I know is I am gradually getting more unwell, tire really quickly. I go to London June to see Doctors who do believe in Morgellons, and not Delusional Parasitosis as it used to be thought to be. Not being believed is so destructive mentaclly..
Richard, any idea why after all this time you tested positive for Lymes? We're you suddenly more unwell, or what? Judith
The Doxy was 100mg.
I had 2 negative ELISA tests. Eventually, I paid for my own - it seemed the only reasonable explanation for the symptoms (as it had with the 1st 2 negative tests). It was positive. My Dr, to his credit, immediately tested again + the immunoblot and were positive. I assume the 2 negatives are explained by the 20%+ false negative/positives ELISA delivers.
I improved while taking the antibiotics but have reverted since.
Hi Richard, I read your article in the Lyme.org newsletter and looked you up here.
I am in Australia. I have Lyme, Bartonellosis and suspected Babesiosis. I have been sick for over 20 years. Australia completely denies the existence of Lyme Disease. I was tested through a German Lab. Armin Labs in Germany is the best in Europe to my knowledge. Igenex is in USA and also one of the best.
I am very concerned that you seem to think you have post Lyme Syndrome. The treatment you have received is extraordinarily insufficient for chronic Lyme. Amoxycillin is useless and only used for children under 12 for acute Lyme (due to possible teeth staining of Doxy). Doxycycline only treats spirochets but not cyst forms of Borrelia or biofilms.
I highly recommend that you find an experienced Lyme doctor and/or Naturopath. Also testing for co-infections is essential. Unfortunately none of this will be cheap. Personally I prefer herbal medicines. Stephen Buhner has a couple of excellent books on treating tick infections if you are interested.
Lyme & Co are a nightmare in every way. I am wishing you all the very best.
Moni
The Armin Labs have, in my mind, a red flag. They are offering a serological test for a neurological bacteria which is very hard to detect in blood. This is why the Elisa etc look for anti-bodies. Armin cites a Nature paper as an endorsement for their work. If you track the paper down to Nature you'll find it's been pulled. The reasons given are patient selection and using data from an unpublished/unreviewed paper. Some would say this amounts to cooking the books, although there may be other reasons. That they still cite it is worrying.
https://www.nature.com/articles/s41598-018-34393-9]
Thank you for writing about your experience with Lyme. I would like to hear about the symptoms that led to your gall bladder removal.
I had ( along with suspected Lyme ) abdominal pain and difficulty digesting fat. This made my doctor suspected a gall bladder problem. The pains and digestion issues moderated with time and my tests where negative.
Thank you for your feedback.
Upper gut pains, and also scans that showed a gallbladder dealing with build-ups of the charmingly-named sludge. So it was removed and nothing changed. It would have had to go eventually, but premature removal did nothing for the Lyme disease.
This is definitely not enough treatment. To treat Lyme that's gone undiagnosed, you need a battery of different antibiotics and after that, something like disulfiram (yes, the drug used to treat alcoholism). Disulfiram was miraculous for me. And yes, even now, five years later, I have strange symptoms that kick up, and am about to embark on new treatment. The buggers sleep and hide, covered in biofilm, and it takes a long time to get rid of layers of spirochetes.
I'm reluctantly drawing the same conclusion. It's well dug in: During antibiotic treatment my blood pressure soared, prompting a greatly increased BP drug intervention by my Dr. Since then the bacteria re-established itself & my BP has fallen. So I'm now mostly off the meds. Weird.
Meanwhile, there's a 7 week wait round here to see a Doc.
Disulfiram? I've found the links to parasitic treatment. How does it work?
It's most likely that all the bacteria were not killed off. Different species of Borrelia (Lyme) require different antibiotics, and different ones again at different stages of treatment for people with long term, multisystemic infections. On top of that, it's quite possible that you were infected with bacteria other than 'Lyme' in the cocktails that the ticks gave you - for example, Ehrlichia, Bartonella, and Rickettsia, each with numerous species of their own and requiring different antibiotic approaches. You may also have been infected with a protozoa, Babesia, with the possibility of some parasitic worms and a virus or 2 in the mix as well. If you haven't already done this, consider going to the US to consult one of the experienced International Lyme and Associated Diseases MDs over there - they are the most expert in this field of medicine by a very long way.
Whoops - it should read 'International Lyme and Associated Diseases Society', but my Lyme brain missed out a word and then failed to spot it - apologies for that.
I have been reading Richard Horowitz's Lyme and Chronic Disease (he's in the Hudson Valley, NY). The book was recommended by a Dr friend of mine who knows a lot more than most. It's a weighty tome - in many ways! However, Horowitz lays out treatment regimes and I'm hoping I can get my local Dr along for the ride.
Whatever else, going to the US would be a lot quicker than a) trying to get in front of a Dr here, and b) staying in the room for long enough to persuade, in my case, him, to take on some new information.
Yes, a weighty tome! Stephen Phillips MD and Dana Parish's book 'Chronic: The Hidden Cause of the Autoimmune Pandemic and How to Get Healthy Again' is another good one to get hold of - he's an excellent Lyme literate MD, but not taking on new patients at the moment as far as I know. Daniel Cameron MD's book 'An Expert's Guide on Navigating Lyme Disease' is another good one (he may be taking on new patients at his clinic...).
Unfortunately NHS doctors are still very blinkered about these infections. It probably isn't worth the effort of trying to get an appointment and, as you say, you only get 5 minutes or so of their time. Apart from that, they don't have the expertise.
The Phillips book is excellent! Thank you.
Oh good - I'm glad you're finding it useful! By the way, there is 1 doctor in the UK you could consider seeing - perhaps someone else may have suggested them to you already. Not via the NHS (of course...), but not as bank account-breaking as the US. I don't know if it's possible to message privately on here, but if so drop me a line and I can give you their name.
Thanks for sharing.
I've been saying for sometime that I think I have Lymes, it is now about 10 years. I am struggling to get a test; I am happy to pay privately but I cannot access the tests (I've rest Western Blot is the one I need) privately.
NTA health are an alternative naturopath which use saliva testing to amazing results (£140) They diagnose with a machine measuring the vibration of the cells and it is simply astonishing what it can find.
I don't know where you are geographically? In the US private testing is more widely available than in the UK.
In the UK www.medichecks.com for the Elisa is fast and easy to do. BUT the Elisa is at best flakey and a Western Immunoblot confirmation is very important - and harder to find. If yr Elisa is positive, call yr GP and tell them. Say NICE guidelines are that 'reasonable grounds for thinking you have Lyme requires them to treat immediately and then investigate further'. This should get you fast-track antibiotics, a 2nd Elisa and an immunoblot. Don't take no for an answer. I had 3 Elisas over about 6 years before I got a positive one. reckon on about 20% false negative/positive. If negative, do you remember a tick or a rash or blistering?
The next problem is that the NHS is largely clueless about treatment.
Thank you for writing this. Love that you worked for the bbc and are now being given hindsight into realising the political hot potato that lyme is. It seems to me that a lot of what needs to be aired isn’t which is why I love your piece? Many of us feel neglected by the GPs nhs and mps.
Thanks for sharing. I was diagnosed circa 1980 and have had a titanic boatload of antibiotics since then and am still sick. When you wrote, "I have been treated with 2 courses of antibiotics and it’s extremely unlikely that any of the bacteria have survived this onslaught." I thought...Oh boy! Is he in for a nasty surprise! I wish you well, but you have to change everything in your life to even get close to remission. Yes, remission, not cure. Clean up your diet to pristine. I mean zero added sugars, and eat organically produced foods whenever possible. Maintain exercise as you are able. Decrease and avoid stress. Sleep as much as you are able. Drink copious amounts of clean water. Take handfuls of a variety of probiotics. There's a good one in the UK called Optibac, For Those on Antibiotics, but add saccharomyces boulardii, a soil bacteria, and the usual lacto and bifido bacterias. Good luck to you!
And oh yes. Keep taking antibiotics. Get your doc to put you on a rotation of antibiotics to keep the critters from getting too comfortable with one. Do some kind of Tai chi/meditation, herbal treatments too and acupuncture. Throw everything you can at it!
The nasty surprise duly arrived. It's a steep learning curve.