If you could start over

If you could start over from the very beginning of your diagnosis with chronic Lyme and coinfections, armed with all the knowledge you have now, what would you do? I am newly diagnosed and overwhelmed by the amount of information available online to digest and sift into useful or not, the decisions I need to make about how to establish care and with whom, and how best to invest limited resources to get well as efficiently as possible. This is especially difficult when dealing with serious brain fog as I’m sure all of you understand. There is such a wealth of knowledge on here and I’d love to hear your thoughts on what steps to take. Is it better to find a local Lyme literate doctor or the best available anywhere? Does anyone have recommendations for doctors in Northern California or anywhere else if they will take on remote patients? Thanks for any and all advice!

I would go to Dr J in DC once I knew I had Lyme instead of getting treatment closer to home for 4 years.

I would have focused on my whole-body health, including the mind-body connection, rather than just focusing on antimicrobial treatment for the first few years. Perhaps some people get better just from bombarding their systems with antimicrobials, but some of us need to address much more before we'll see improvement. Don't neglect diet, digestion, stress, movement, gut microbes, sleep, the immune system, the nervous system, hormones, and mental health. They all matter.

Also, don't stop trying things if the path that resonates first (or second or tenth) doesn't help. It's important to give treatments a chance to work, but don't be afraid to pivot and try something new, even if it seems weird. The things that ended up catapulting me around a corner didn't feel relevant or useful, and I tried them basically out of desperation.

Early in my illness, a long-term chronic illness sufferer advised me not to get stuck in the weeds. But I still totally got stuck in the weeds - which organisms might be overgrown in my intestines, which neurotransmitters might be low, how many co-infections I have not addressed directly, etc. - and I wish I had focused on the basics earlier.

Finally, remember that your doctors and specialists work for you. Think of yourself as the president of your health, and they are your cabinet. They have expertise that you don't, so you consult them and take their opinions into consideration, but ultimately the direction your health goes is up to you, and you're the only one who sees the whole picture. What works for one person doesn't necessarily work for another, so beware practitioners who take a one-size-fits all approach, and try not to compare yourself too much to others.

Also, this probably will be a long haul, unfortunately. Try not to think of this is your life being "on hold" or over. You're still here, even if life doesn't look and feel like you hoped for now. No one wants character-building experiences, and I'm not telling you not to feel disappointed or frustrated, but know that it's possible to adjust, find meaning, learn things, and other not-awful stuff even in the midst of the garbage pile that is chronic illness.

As others have said, I would have taken the treatments that actually work, instead of wasting time trying many things that didn't work.

hello and welcome

Sara makes some great points - whole body health is critical to recovery from chronic disease - unless you are one of the lucky few who can carry on much as before and just take antibiotics - in my experience that is rare once lyme becomes chronic

diet / diet optimisation - for me this was a paleo ketogenic diet. this made the biggest difference of any treatment so far - but i took me 4 years to find it - so i wish i had done that sooner knowing what i now know

sleep is critical also - that took me some time to get on top of also - and it takes time to build new habits and rhythms - but every day i have after a good sleep is a better day.

stress management - its so hard to recover from chronic illnesses (especially ones like lyme and bart that make people extra anxious and unable to tolerate stress) if you are constantly stressed by situations or people around you.
But you cannot control other people or many situations that occur in your day/life - so what is the answer?
we each hoe t find our own way - but for me the answer lies in how we think about ourselves our life and and our experiences -
This is what is in our control - but this too is one of those things that is easy to say and hard to do - nevertheless a huge reduction in stress can be achieved - and is necessary for some people to get better, as a revved up stress response suppresses the immune system, disturbed sleep and plays havoc with anxiety which can otherwise take over their lives.

Exercise - this may seem crazy to talk about as important in treatment of very sick people - but none the less - i wish i had understood better the role that exercise plays in helping a person recover from chronic illness, sooner.
Even when we are quite sick we can in fact exercise. And our bodies actually need it and the metabolic and immune benefits and sleep benefits and mood benefits it brings, in fact sick people need these even more than well people - we just feel s awful that we don't even consider it is possible - IT IS - we just have to start at a very reduced level - perhaps almost nothing to begin with - but we can then very gradually work up. famous Lyme doctors have stressed the importance of exercise to recovery - even saying if we do not exercise we will not recover.
i believe this is due to the powerful effects on our immune health that exercise has.
i have been amazed at how i have actually been able to gain strength and physical ability, and flexibility through exercise - even though i am still ill i look better now physically than most of my friends at 50+ and my quality of life if improving - not reducing

in terms of treatment - as others have mentioned - do not be tempted by prior preferences or beliefs or charismatic practitioners, or personal recommendations from a friend or acquaintance, or tales of miracle cures on the internet etc etc - to go for fringe treatments first.

instead take a cold hard rational judgement of the facts on where to start
The facts are that although they do not work for 100% of people - the majority of people that get well do so with antibiotics via a LLMD
-after that its probably herbs - eg Buhner's protocols or others
-after that it may be things like rife, bee-venom,
and then rapidly starts to get into the fringes of things that might sometime work for some people - but there is very little data to rely on and many f the so called treatments are totally bogus - or we just don't have good data either way - so its a mine field.

finally - two useful resources i would recommend - as some of the best out there in terms of a reliable grounding in the subject of lyme and how to treat it

Joseph Burrascano's - lyme treatment guidelines 2008 - is a pretty good overview of lyme and treatment - its a freely available pdf that you can read in an hour or so and covers all the basics. he was one of the first LLMDs and pretty much everything he wrote is still valid today

Richard Horowitz MD - "How can i get better" - this is a much heftier hard copy book available on amazon etc - from another of the most famous LLMD's - but very useful in that it uses a very helpful model of complex disease - explaining how many systems in the body are affected and how one can go about correcting them in turn to support healing. i have read many books on Lyme disease and would say this one is about the best

all the best!

…. And then there’s me.

Early on - soon after diagnosis, I changed my diet.
Sugar free, gluten free…etc
But after awhile, I started to add in foods that aren’t considered the healthiest.
… And now I don’t have a particular diet.
But we rarely go out for meals.

For instance - dinner tonight was lasagne. So that includes burger, pasta and cheese, which many here consider to be unhealthy.
At least it’s home made… lol

I don’t have any digestion issues.

trkane said...

Exercise. I now have osteoporosis which I contribute to years of being sedentary. it is hard though because for me it was hard not to overdue and then relapse. So my solution was to do nothing! That wasn't good.

yep that's the trap that puts most people with chronic illnesses - and especially those with PEM off

but the solution is to start below your threshold - and increase only VERY gradually - and in doing so gradually learn where your threshold is and - then increase only at a rate you can tolerate

you can literally start by moving your arms and legs a little while you lie in bed - the start point is not important - as long as its below what you can tolerate at first

the human body will increase its tolerance for exercise over time - even in sick people - you just have to go more slowly and carefully than if you are well.

I would have went straight to jemsek clinic and not wasted my time or money with anyone else. No one understands lyme like they do.