Why we do not get better...treatments questionability.

I used to drink a full pot (12 cups) daily to keep going - this is one of the things that lead me to adrenal issues with my first set of infections.

You said "Even now after reducing the dosage to one cup a day I can still go to sleep 30 min after a cup of coffee." This is also something that I could easily do, and discovered that it's an indicator of possible adrenals issues. Have you had the saliva testing for your adrenals recently?

While I do understand what you are saying, with herbs, it's not advised to keep changing them, because they are not like pharmaceutical and need time to work - switching them too soon means you won't be able to benefit from them like you would staying on them for longer periods of time. I used the same herbs for a full 12 months to heal from Lyme, and it worked beautifully for me. Most people find this to be true as well.

As for raising doses dramatically, the problem with this is that many of us don't detox well, and it can lead to very serious, even life threatening circumstances. A herx is a cytokine cascade situation, and if it's not carefully controlled, can get out of hand and the person can end up with a cytokine storm, where it is life threatening and the person will need steroids to calm the run away inflammation that will shut down the entire body. This is why we suggest titrating up slowly, not just to avoid feeling bad. I've helped people dig their way out of these situations several times (because I too have been in that situation) and it's no place to have to start over from. It's miserable, defeating and just plain hard to have to start all over from an even further disadvantaged place. If you try this, please be very, very careful. I simply don't recommend it.

artermix said...
No I did not have my adrenals tested. I have a test Rx from LLMD. OK so if I test that I need help with adrenals....now what?

Well why we do not seem concerned about herx and cytokine cascade from abx so much??

But we do! Detoxing is a must for all treatments to limit herxing as much as possible.
That's why we don't recommend starting two abx at the same time...and we often will tell someone to back off of full dose when they're herxing bad to tame the herx (and detox).

Well most doctors treating lyme they do not even speak of detox. Not saying is unimportant....I did a castor oil pack last night and before that...and before that...and all other detox stuff.

Also wouldn't my adrenals be taxed from lyme instead not the other way around? Why would I be producing to much cortisol. Why a person who was healthy and then healthier would suddenly have this additional problem?
Why suddenly I have develop this adrenal issue? What triggered it?

My coffee intake has decreased greatly since before lyme. Before dad died, in 2014....
I really feel caffeine was never a problem for me. I had to decrease the amount because of cost. Often caffeine has been a lifesaver in conjunction with an analgesic when I battle migraine headache.

The test ordered from the dr is a two step test am & pm..... Is this another bad testing? Reason I am asking is that if it is then I am not even going to take any tests. They all seem to have a significant margin of errors....unless I take a pricy test. I cannot afford to pay for test anymore. I wonder how people dealt in the past. No testing just reading your eyes, tongue....then when it was your time you died. All this testing is not helping people getting better but only living them longer with a torture of pains that nobody can explain.

I am frustrated. I have lost total respect for science, healthcare and the likes.

lots of people build tolerance to coffee.....many many people. They all do not have bad adrenals.

>>The other thing is, if you have low adrenal issues, you need to completely avoid all caffeine, as this will only further stimulate them to continue on their destructive path, producing high amounts of cortisol

my wife has stage 3 adrenal fatigue which i believe means she has too little cortisol. she's still dead tired all the time even on a bunch of adrenal support supplements. she sees her LLMD next week told her to push for a spit test at 3x during the day to get an accurate reading how she's doing.

she's cut out caffeine, sugar and gluten but not much is helping yet. any other suggestions for her stage 3 fatigue would be welcome.

so the adrenal 2 times a day blood test is not good?

Has anyone ever done the protocol from Jay Davidson at Vibrant Life?He looks at specific genetics and then has 5 step program with detox and rebuilding as part of the program. He developed this to get his wife well.

His program is stupidly expensive (OF COURSE IT IS, so not something that most of us could just try on a whim......) .....but I would think that having the hints as to what each of our individual bodies can tolerate due to our genetics would be useful in figuring out a strategy.

I get so horrified at the mad scientist aspect of treating lyme....".Try this and if you feel worse then you might be getting better OR you might just be getting worse because the lyme is having its way with you!"

Wouldn't it be wonderful if they were able to test the genes of the bacteria.......and find some susceptibility there.. Some sort of smart drug approach.

Anyway, I am really just wondering if anyone has used the Jay Davidson genetic approach and what type of results have been obtained? I am at the point where I feel like there are so many chases down rabbit holes with this thing.

I want the wizard stick!

No Arter... I was saying lyme treatment as we know it is way too trial and error for me......

Jay Davidson says that he spends his time interpreting the genetic results to know what kinks and strengths we might have and targets lyme therapy based on this. More specific to the individual.

For instance (and because I have replaced most of my working brain cells with bacteria I may be off on this), he says that there is a certain type of vitamin D metabolism that shows up genetically that makes it important to not just randomly take vitamin D to boost levels. Have to be careful with some types. ( I am thinking that this is unrelated to the Marshall Protocol - something else) He also interprets the MTHFR genes in a more considered way than most docs. He says that they are not being addressed correctly even by the docs that understand them. ??

I would like the understanding of how my body specifically handles things. I do not know that this is the method and was wondering who might have used him....? There are so many rabbit holes that we all go down.

And then of course, there is the question of protocol. IF someone has the gene for money, I am sure that he has a great protocol to unburden them of that!

We have to remember that we are smack bad in the middle of the cutting edge of medicine with Lyme and chronic Lyme treatments. There hasn't been enough research done to find good treatments yet, and yet the patients are desperate for these same treatments. It's all guess work because that's all we have. We can ignore too many details - or get lost in the details anywhere in the process because their is generally so much going haywire in a chronic Lyme patient.

No, all those that don't tolerate coffee do not have adrenal issues. As I said, those that have adrenal issue need to avoid caffeine though. July Morning is right, the adrenals produce the hormones that keep everything in the body running - that's why if a person develops Addisons, when the adrenals stop producing all those lovely little hormones completely, it's life threatening unless dealt with appropriately.

A 3 or 4 time a day blood test would be okay for checking cortisol levels - IF the doctor understood how to read the tests properly, but most don't. Most don't know how faulty a one time a day blood test for cortisol is. It only gives a snapshot of what the cortisol level is the very moment the blood is drawn. Salvia tests are more basic to understand, can be done at home and sent in, and easy enough to interpret.

Cortisol levels should be highest when we first get up and still be fairly high until around noon, then it's very important for them to gradually lower until we are at our lowest point with cortisol just before going to bed. Being tested 4 times in a single day is the only way to get a complete enough picture of cortisol output throughout the day, so that someone with abundant knowledge of adrenal health can help the person recover successfully.

I'm not sure what a wizard stick is, but I want one too!! What do I have to do??


Rikky,
What is your wife on and how much currently? Adrenals are funny things that are VERY temperamental in my experience. Lol! They like what they like, and we each need our own dose and combination of things, but maybe I can shed a bit of light on some aspect?

Or and Artermix, I too was a very happy and healthy child, I was even quite a bit ahead with a lot of development goals for infant and young children, like walking early and talking well early (ironically, it was my brother that was very sickly as a baby and young child). All it took was I woke up one morning with 105 fever. I remember the ice baths, the pleading with my mom to get out ( I was sooo cold!! My teeth were chattering nonstop!), but my fever wouldn't break.

I had to do 3 rounds of abx (no one remembers what though) and everyone thought after my fever broke, that was the end of it - only it wasn't. I kept getting sick, a lot. What no one understood was that what I was sick with over and over again is now recognized as young children's symptoms of tick borne infections - and it went on for another 37 years.

At least I did have periods of many months in between many of my "bouts of sickness" that were usually fairly normal, barring things like Lyme arthritis flaring, Pink Eye, Bronchitis and various and constant gastrointestinal issues all throughout my life.

Cross a trav with gergia hunter and we have a super llllmd

@Julymorning, i too am self-pulsing Doxy against the recommendation of my "llmd" (who said it doesnt work and she wouldnt treat me if i did- but at least she will keep prescribing doxy until my appt with a well respected LLMD)...but i am doing a 8 days on 8 days off, followed by 2 wks on 2 wks off....also seeing a naturopath, who has me on borrelogen, argentyn 23 silver, serraptase, chlorella etc

can i ask what pulsing schedule you used? Dr Lewis at Northeastern seemed to have some success in a petri dish with pulsing even doxy, though Tulane's newest study pulsing doxy didnt have the same positive results

i personally feel alot of the issues/symptoms we feel is from the inflammation/ herxes caused by the draconian nature of our abx (and some of the herbals)...at least pulsing, if NOTHING else, allows your body to catch up on detoxing