I have recently reengaged with the NHS in the UK after little or no contact for 4-5 years since they told me “the system has failed you, I suggest you look elsewhere” and I was forced to manage my own care.
I wasn’t expecting much in terms of support with Lyme - but the latest GP seems more open minded than most and genuinely wanting to help.
The problem is, when speaking to her its clear we are inhabiting entirely different realities.
I like many of you have lived with this disease for years, read hundreds of papers, books etc on the subject while she is clearly only exposed to the standard NHS dogma of denial - and to make matters worse is being advised by consultant rheumatologists that there is “no good evidence for persistent infection or benefit for further antibiotics” (The standard NHS line here in the UK).
So, while willing to help, she is completely unaware of the overwhelming body of evidence on persistence and antibiotic treatment successes that have accumulated over the last 30 years.
I wrote a letter to try to present a non-threatening but broader perspective on the state of the science on Lyme disease, persistence, and effectiveness of longer-term antibiotics. The goal being to open her mind to at least the possibility that there is indeed ongoing infection in persons with ongoing symptoms, rather than purely some kind of auto-immune process.
the letter presents evidence in the form of 4 to 5 high quality references in each of the following sections
1. Persistence of Borrelia in Human Tissues After Antibiotic Treatment
2. Persistence Confirmed in Every Animal Model Tested
3. Standard Antibiotics Cannot Eradicate Borrelia Even Under Laboratory Conditions
4. Three Biological Mechanisms Explain Why Borrelia Survives Treatment
5. When Treatment Addresses Persistence Mechanisms, Patients Improve
its compelling but I doubt it will be enough to convince them to prescribe truly appropriate treatment.
It may be enough to convince them to support me with regular safety labs while I continue self-treatment - and in any case I want it on my medical file.
anyway I thought I would share it here in case anyone else would like to use it for similar purposes
its a word document - personal details removed - feel free to download and edit / adjust as you see fit
https://docs.google.com/document/d/1_d8wkndggrpy_vfy-x36dewyyvt2wh1k/edit?usp=sharing&ouid=107444071949869960541&rtpof=true&sd=true
ill since Feb 2015 – Lyme (Armin), Mycoplasma Pn, suspected Bart
Bart now conclusively diagnosed by microscopy see https://tinyurl.com/2eatxxz7
60% recovered - most useful approaches:
=Wholefood Keto Diet
=Exercise – initially walking – now weights too
=Buhner Lyme herbs and co-infect herbs
=Immune modulation- Ivermectin and LDN
=Methylene Blue (Bart)
+T4 and T3 for thyroid
thank you garzie for sharing this. There are contain the most importants studys... You just wrote about borrelia, but i guess it will be to much to include Bartonella and Babesia. I think this is important and we all should do this kind of our own way. Sharing the information and try to talk to much people we can. I also will write a letter to all the doctors who told me im fine im mental sick... You did it in a non threating way based on scientic prove and thats quite important
Garzie -Your letter to your GP is a very good idea. At the least, it can’t hurt. It will also tell you exactly where she is and how well or not so well she reacts to it. That will give you an idea of what you can and cannot expect from her when it comes to Lyme
I’ll be very curious on how that all lays out for you. And yes, I totally agree when it comes to Lyme, those that have dealt with it for years and put in many hours of research do know much more than the average doctor.
I have had the same GP for 8 years now. She is much more open and knowledgeable about Lyme than any GP I’ve had in the past. She is open to ideas I throw out to her and has been very helpful. Unfortunately, she has decided to retire in July, so your letter hits home with me as I may be making use of it.
Thanks for your post on it.
I’ll be very curious on how that all lays out for you. And yes, I totally agree when it comes to Lyme, those that have dealt with it for years and put in many hours of research do know much more than the average doctor.
I have had the same GP for 8 years now. She is much more open and knowledgeable about Lyme than any GP I’ve had in the past. She is open to ideas I throw out to her and has been very helpful. Unfortunately, she has decided to retire in July, so your letter hits home with me as I may be making use of it.
Thanks for your post on it.
thanks both
Palermo - i think its too much to expect a GP who hasn't been exposed to any of this stuff to go from "there is no ongoing infection" to - "there IS ongoing infection AND with multiple infectious organisms".
GP's are heavily ensconced in the notion of one microbe, one disease and one set of symptoms. The concept of multiple co-existing infections with overlapping symptoms is a bit too much of a leap for them to manage in a single step - so i kept it to Lyme for this letter.
you have to pick your battles
RW happy if it helps you in any way - i wonder if your current GP, who seems like a really good find, could recommend a possible successor ?
ill since Feb 2015 – Lyme (Armin), Mycoplasma Pn, suspected Bart
Bart now conclusively diagnosed by microscopy see https://tinyurl.com/2eatxxz7
60% recovered - most useful approaches:
=Wholefood Keto Diet
=Exercise – initially walking – now weights too
=Buhner Lyme herbs and co-infect herbs
=Immune modulation- Ivermectin and LDN
=Methylene Blue (Bart)
+T4 and T3 for thyroid
Palermo - i think its too much to expect a GP who hasn't been exposed to any of this stuff to go from "there is no ongoing infection" to - "there IS ongoing infection AND with multiple infectious organisms".
GP's are heavily ensconced in the notion of one microbe, one disease and one set of symptoms. The concept of multiple co-existing infections with overlapping symptoms is a bit too much of a leap for them to manage in a single step - so i kept it to Lyme for this letter.
you have to pick your battles
RW happy if it helps you in any way - i wonder if your current GP, who seems like a really good find, could recommend a possible successor ?
ill since Feb 2015 – Lyme (Armin), Mycoplasma Pn, suspected Bart
Bart now conclusively diagnosed by microscopy see https://tinyurl.com/2eatxxz7
60% recovered - most useful approaches:
=Wholefood Keto Diet
=Exercise – initially walking – now weights too
=Buhner Lyme herbs and co-infect herbs
=Immune modulation- Ivermectin and LDN
=Methylene Blue (Bart)
+T4 and T3 for thyroid