Right now I'm a bit upset and shocked by the Lyme community.
Lyme Disease became known to the public over 30 years ago, yet it is still a highly controversial diagnosis. Much of the medical community and general population does not believe in Chronic Lyme. As a community we fight for every bit of information, research, treatment, and doctor. We form online communities and trade doctor information in secret like a Lyme Disease Underground Railroad. Many often seek alternatives through online pharmacies or natural treatments. Most of us pay out of pocket and often have to sacrifice great things just to pay for our doctors and treatment.
Over the 30 years that Lyme has been known to the public, there have been other pieces added to the puzzle. These things are called co-infections. LLMDs figured out that ticks do not just carry Lyme, but they carry a multitude of other infections, many of which infect humans. Over the many, many years the list of coinfections has grown.
The most well known coinfections:
Babesia
Bartonella
Brucella
Colorado Tick Fever
Ehrlichia
Epstein Barr Virus
Mycoplasma
Powassan Virus
Q Fever
STARI
Tick Paralysis
Tickborne Relapsing Fever
Tularemia
A host of other worms and parasites
Quite the list, isn't it?
Overwhelming to say the least.... Especially for the newly diagnosed.
But those are all co-infections of ticks and blood sucking insects. All possibilities when you believe you have Lyme.
Recently over the last year there has been news of a new co-infection. A new parasite. It has not been confirmed that this parasite is transmitted through ticks, but it is highly transmitted by mosquitoes.
It is thought that the majority of the population has this parasite, as most mosquitoes have it, and everyone has been bitten by a mosquito at one time or another.
Many people who have this parasite are not very sick. Those people usually do not have any other health conditions or infections.
However, this parasite has been found in people who have CFS, CFIDS, FM, MS, ALS, Diabetes, and other chronic illness.
It is being found in people who have Chronic Lyme.
There is one doctor who found this parasite. And for the last 10 years he has been researching and studying, trying to figure out where it comes from, how it behaves, and how to treat it.
Over the last year he has started presenting about this parasite, giving interviews, lecturing at conferences.
He, himself is highly respected in the ILADs community. He also has a world renowned LLMD working with him on research. This LLMD has been treating his own patients for this new parasite.
They do not have all the answers, no. They do not have a cure. The information available about this parasite is hard to find...
And so many in the Lyme community are rejecting this as even a possibility.
They don't want to hear about it.
Until they have a cure for it - they don't want to hear about it.
To that I say:
There is no cure for Lyme. So until there is, should we silence you as well? Should we no longer talk about it or spread awareness?
Just because there is no cure?
There is no cure for Cancer.... should we stop talking about that as well?
How can a community that is so ostracized and criticized by so many respond this way to a new unknown infection?
Isn't that hypocritical?
You want to be heard, to have rights, to be able to get the knowledge and treatment you need without having to fight for everything or do it in hiding.....
Yet you call another infection "fake", "a fraud", the doctor "a money grubbing crock"....
Really??
Have we as a community become so narrow minded and obsessed that we are forgetting to look beyond that which we believe?
Have we been fighting so long that we cannot do anything else?
Have we been sick so long that this is now our identity? We wouldn't know who we were without this label?
For 30 years we have walked the same path, and it has gotten very few people to remission. Many have been treating for 20 years without much progress.
No, this does not promise cure... but it does offer hope. It offers hope for remission - faster remission. Is that really such a terrible thought?
Cures only come from those who seek the new... the unknown.
If no one traveled the untrodden path, we wouldn't have what we do today... we wouldn't have ILADS or LLMDS....
But if belief is not possible.... at least give tolerance.
Don't ostracize those who choose to put faith in and treat this parasite....
We all want one thing: To get better.
At least... that is what I want.
I'm not so sure about others anymore....
Protomyxzoa Rheumatica (FL1953) is real.
It creates the sticky shell of biofilm.
Lyme does not. Lyme is a PART of biofilm. But Lyme itself does not create it. No one organism creates it. Biofilm is a colony of multiple organisms. FL1953 is what makes it so resistant to treatment. It creates a sticky gel, much like a sheild or a wall between the organisms and the immune system or medications.
When people have multiple chronic infections, there is more biofilm. This becomes too much for the immune system to handle. LLMDs have said for years: Biofilm is what makes an illness chronic.
The treatment for FL1953 starts with Doxycycline. This is a common "catch all" treatment. Doxy has many different abilities. It has some abilities to kill parasites, as well as bacteria.
Other treatments used are similar to Babesia treatment and other parasite treatments.
For years the doctor who discovered this parasite believed his patients all had Babesia. Yet he could not find it in their blood, and they were not responding well to treatment.
That is because the other main part of treatment is diet.
FL1953 thrives on lipids. The parasite will grow 100 times faster with fat, than without.
So it is imperative that a low fat vegan diet be followed. Many see significant improvement just by following the diet.
Starving the parasite from fat weakens it, which weakens the biofilm.
This makes treating hiding infections much easier.
The diet also makes for an "easy" and inexpensive test. Those who have FL1953 and Lyme, typically have a herx reaction when starting the diet. The bugs get mad, get weaker, and in response - symptoms worsen.
To me, trying a low fat vegan diet is not a big risk.
Not big enough to warrant the comments and rejection that it has from the Lyme Community.
I just.... I don't get it.
