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New llmd says I need endocrine support

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Posted 5/4/2017 8:14 PM (GMT 0)
I saw my new llmd yesterday. I'm upset now that I wasted months with my pcp, and then with the naturopath I saw from Oct-February. Not thrilled about my endocrine system being off kilter either.

The initial appt consisted mostly of him taking a history, poring over my labs, and doing a physical exam. He said my overall severity is about 5.5 on a scale of 10 being the worst. I guess there's some solace there. Hormonal issues have been overlooked by previous docs.

I think he may have figured out my herx problem and part of my fatigue problem. When I herx from strong herbals, I get all wired like waaaay too much caffeine. He believes this is an endocrine issue. Makes sense as all this detoxing has made no appreciable difference for that particular symptom.

In short, he thinks I need endocrine support before getting aggressive with killing off the bugs. He says there are fewer treatment failures and better compliance when patients are made more comfortable before getting down and dirty with abx.


He put me on beyond balance mc-bab - 2. Why? He said this is used as a step to get patients to tolerate a-bab. (I didnt). He said we'll switch to abx once the endocrine stuff has improved some and the babesia is whittled down a bit more from herbals. He said that once endocrine support is in place, I'll be better able to tolerate the aggressive abx therapy. He thinks babesia is the dominant pathogen at this time. (I'm igx positive for 3 b's) He also wants me to continue artemesinin. At some point in the near future I'd like to switch from artemesinin to cryptolepis but will have that discussion next visit.

I was kind of hoping he'd go straight to an abx regimen but what he's saying seems logical enough. My nervous system is very sensitive right now and he doesn't want me going to the emergency room.

Suspects Pre-diabetes
He noticed that my hemoglobin a1c has been @ the top or just above the range indicating pre-diabetes.

Low Testosterone
My total testosterone is in range, but at the lower end. Free testosterone is below range. Sex hormone binding globulin is dead center of range. My pcp, as usual said oh you're fine no problem. When the ND said you can reverse low testosterone by taking cold showers, I should have turned and high tailed it then as there's no excuse for a doctor to be disseminating urban legends. New llmd thinks I need testosterone support.

Thyroid
My tsh was lower range but not low enough to trigger a reflex to ft4. My pcp said there's no problem with my thyroid based on that # alone. New llmd thinks I have hypo thyroid issues and ordered ft3, ft4, reverse ft3, and the anti tpo & tg antibodies to r/o hashimoto's.

I found stop the thyroid madness and found useful useful info there. They say tons of people with thyroid issues go undiagnosed because of the strict readings of "normal range" on tsh further testing is rarely done when it should be. Some of the symptoms they describe for thyroid issues match up with some of the thyroid med reactions they talk about.

Adrenals
Then there's adrenals. I had the neuroscience 4 point diurnal salivary cortisol test done back in November. My old ND rx'd cortisol Manager and hpa adapt which gave me the same jitters that I've gotten from a-bab, Buhner herbs, and KW Lyme Formula. I think it was from the ashwagandha.

Jacob teitelbaum and sttm say that cortisol should be in the upper part of the range during the day and way low at night for optimal health. My cortisol is lower part of the reference range in the day, then way above range at 5pm, then slightly above range at 10 pm.

While "in range" dhea is also near the bottom of the range.

So, in a nutshell he ordered more tests: thyroids, b12, folate, thiamine, testosterones, vitamin d, hba1c.

Also started me on metagenix "adreset". It contains cordyceps 800mg, panax ginseng 400mg, rhodiola 100mg. Fingers crossed it agrees with me as it was expensive.

Post Edited (BJD55) : 5/4/2017 2:17:51 PM (GMT-6)

Posted 5/4/2017 8:37 PM (GMT 0)
Sounds like you had a good appt BJD with your new LLMD.

I like the idea of him preparing/stabilizing before starting the abx.
Posted 5/4/2017 8:46 PM (GMT 0)

Girlie said...
Sounds like you had a good appt BJD with your new LLMD.

I like the idea of him preparing/stabilizing before starting the abx.


Yeah, it sounds good to me too. Fingers crossed it's not just another money making scheme. I feel like I've been "had" by the naturopath. At least the new guy is older and ilads trained.
Posted 5/4/2017 8:49 PM (GMT 0)
Keep us posted
Posted 5/4/2017 9:55 PM (GMT 0)
My husband is getting up there in age and noticed that he was not sleeping well at all.

He went and got tested and his testosterone was a little lower than usual.

He went to Dr. Axe to do it as naturally as he could. /draxe.com/natural-testosterone-boosters/

Maybe this will help you too. I hope so. Anyway, it sounds like an very productive doctor visit and I am so glad.

PS, I love the Beyond Balance products.
Posted 5/4/2017 10:15 PM (GMT 0)
Note that adrenal issues (part of the endocrine system) often cause glucose issues so not surprised about the a1c. Fix the other issues and any blood sugar issues typically balance out.
Posted 5/4/2017 10:21 PM (GMT 0)
BJD55 -

Wow... your experience has been pretty similar to mine. I am SO GLAD you found your LLMD. This is what my LLMD did before starting me on antimicrobials - so important. The endocrine system (pituitary, thyroid, parathyroid glands, adrenals, pancreas, ovaries or testicles) and GI and Neurotransmitters have to interconnect w/ the immune system in order for both--and other systems--to function well.

And it is not easy to balance things, certainly not so many different pieces, and it takes time. But the reality is, if you don't, you'll waste time and money with ineffective Lyme & co treatment. I learned this the hard way. It's not necessary to solve each area entirely before moving on the the next area, but it does help to get each area up to a basic level of functioning and then kind of ratchet everything up step-by-step. Addressing the infections is hard on the entire body so you need this support or you run the risk of getting even sicker.

Babs can be disruptive to endocrine function, particularly adrenals, so that's probably why he wants to focus on those two. The Byron White A-bab is pretty strong. I did much better w/ Beyond Balance MC-Bab and getting ready to graduate to A-bab soon.

Add in each component one-by-one, increasing detox as you go. Keep good notes.

Let us know how things go!

-p
Posted 5/4/2017 10:44 PM (GMT 0)

Pirouette said...
BJD55 -

Wow... your experience has been pretty similar to mine. I am SO GLAD you found your LLMD. This is what my LLMD did before starting me on antimicrobials - so important. The endocrine system (pituitary, thyroid, parathyroid glands, adrenals, pancreas, ovaries or testicles) and GI and Neurotransmitters have to interconnect w/ the immune system in order for both--and other systems--to function well.

And it is not easy to balance things, certainly not so many different pieces, and it takes time. But the reality is, if you don't, you'll waste time and money with ineffective Lyme & co treatment. I learned this the hard way. It's not necessary to solve each area entirely before moving on the the next area, but it does help to get each area up to a basic level of functioning and then kind of ratchet everything up step-by-step. Addressing the infections is hard on the entire body so you need this support or you run the risk of getting even sicker.

Babs can be disruptive to endocrine function, particularly adrenals, so that's probably why he wants to focus on those two. The Byron White A-bab is pretty strong. I did much better w/ Beyond Balance MC-Bab and getting ready to graduate to A-bab soon.

Add in each component one-by-one, increasing detox as you go. Keep good notes.

Let us know how things go!

-p

Thx pirouette,
I'm glad to hear this guy's not off in his own world like my ND was. I'm not thrilled about this taking a long time however. I just want my life back. Do say more about the mc-bab please? In what ways is it effective? I did see its 1:10 where abab is 1:1.

Are you still treating endocrine.? Which and with what?

Thx.
Posted 5/4/2017 11:03 PM (GMT 0)
The hardest thing about my treatment has been the terrifying neuro-psycho flares. I almost didn't survive them--not to be melodramatic but that's when I was at my most vulnerable and least in control. I've lived with other physical (and neuro-psycho) sx for 16 yrs before starting treatment. But those herxes were almost deal-breakers for me.

SECOND worst was coming to accept the hard reality that healing was going to go in a different order than what I wanted and was going to take a long, long time. If only I had known what I know now I might be done already. And there's no way around it. There's no panacea or magic herb or drug to rebalance endocrine or GI. It's a circuitous maze that seems to never end and then all of a sudden, you're better. ;)

6 yrs ago before I even suspected Lyme, I worked w/ an ND to the tune of $20k over 2 yrs to heal endocrine & GI issues and made little progress. When I finally got myself to an LLMD and did more investigation into DNA mutations and infection analysis I finally realized that they were probably also creating roadblocks.

I worked pretty hard to heal GI and that helped. But I didn't make much progress w/ endocrine issues until I stopped working. I don't think most other people are that bad but it's really important to slow life down so that your cortisol production is higher during the day and lower at night - that's a direct reflection of your adrenals struggling to pump out the right amounts at the right time because reserves are low and demand is high.

You can only drive so far with a finite amount of oil for the engine. And you know what happens when the oil runs dry. And despite all of the supplemental support you can find, in order to refill the reserves, your body needs rest, peace, and TLC that comes with only time. I ignored that one detail for a long, long time and paid the price.

Most of my endocrine levels are "good enough" right now and even pretty good towards the end of the year. I started biofilm busting at the end of the year, which released a lot of gunk and adrenals started acting up again. This time, since I'm at a higher level of functioning, I responded pretty well to babs herbs so now I'm at a stage where reducing the infection load is having an effect on the endocrine functions rather than the struggling body systems dragging response to treatment down... if that makes any sense.

-p

Post Edited (Pirouette) : 5/4/2017 5:06:30 PM (GMT-6)

Posted 5/5/2017 12:00 AM (GMT 0)

Pirouette said...

There's no panacea or magic herb or drug to rebalance endocrine or GI. It's a circuitous maze that seems to never end and then all of a sudden, you're better. ;)


I worked pretty hard to heal GI and that helped. But I didn't make much progress w/ endocrine issues until I stopped working. I don't think most other people are that bad but it's really important to slow life down so that your cortisol production is higher during the day and lower at night - that's a direct reflection of your adrenals struggling to pump out the right amounts at the right time because reserves are low and demand is high.

Most of my endocrine levels are "good enough" right now and even pretty good towards the end of the year. I started biofilm busting at the end of the year, which released a lot of gunk and adrenals started acting up again. This time, since I'm at a higher level of functioning, I responded pretty well to babs herbs so now I'm at a stage where reducing the infection load is having an effect on the endocrine functions rather than the struggling body systems dragging response to treatment down... if that makes any sense.

-p


Thanks again for the thoughtful reply pirouette. Wow, what you describe is intense. But to be on iv, I reckon you've got to be pretty sick.

My fatigue is such that I'm forced out of work. Before this hit last year, the only time I ever felt fatigue was when I had the flu, and I've maybe had the flu 5 or 6 times in 61 years. I've had 2 encouraging up swings since I got sick but crashed myself back down by attempting to recondition myself a bit.

So Pirouette, were your adrenals out of reference range? Or within range but at the lower end? How about thyroid levels?

I'm still puzzled how my #s could be in range, yet still making me sicker. Are these reference ranges skewed?

Yes your last statement makes total sense. I'm glad the antimicrobials are doing their job for you now.
Posted 5/5/2017 12:26 AM (GMT 0)
Quite frankly, when I started treatment I had MANY issues all going on simultaneously - the tick infections were not the most extreme.

As mentioned, my GI was in really bad shape - I was on a liquid diet a few yrs prior and that had improved a bit but I was in such bad shape that no oral treatment was going to work and the antimicrobial herbs I was on were not making any impact. Within a couple of months, I lost the ability to walk and that's when my LLMD decided it was time to start the abx. Due to my GI issues, we went straight to IV. But I was making progress on GI and within about 6 months, I was considerably better. But I stayed on IV because I already had my port installed and I wasn't about to jeopardize my hard work on GI.

So while many people still think IV is for the worst cases, more and more, fewer people are doing IV and I really only recommend IV for those with GI issues that might prevent proper absorption and who might be vulnerable to increased GI damage from oral abx. IV is an added complexity most of us don't need.

My adrenals were almost flatlined over the course of a 12-hr period. Your cortisol levels are supposed to be highest at the start of the day and then fall in a parabolic curve and level out at the lowest level for bedtime. Mine raised a little bit in the AM but then flatlined, and finished higher at bedtime than they should have been, which is a late stage of adrenal exhaustion/failure. This indicates that I just didn't have much to pump out anymore.

For people who have anxiety all day or feel "jacked up", they're getting too much cortisol from too much production, overstimulation of adrenals due to the stress trigger. This can also be serious but it's generally at an earlier stage of adrenal fatigue, since there is still cortisol being pumped out. This is a good red flag to rebalance before reserves get too low, but it does drain reserves so it's important to treat.

I'm hypothyroid but I've been on Naturethroid for several years. I recently increased my dose, still trying to tweak it. And it's a good thing to revisit as you move along treatment milestones as your body systems are dynamic and change over the course of illness and recovery.

This is what you posted about your thyroid levels:
"Jacob teitelbaum and sttm say that cortisol should be in the upper part of the range during the day and way low at night for optimal health. My cortisol is lower part of the reference range in the day, then way above range at 5pm, then slightly above range at 10 pm."

There are a few of us here who feel the medical industry's range is off and that a healthy range for some people should be shifted a little higher. Teitelbaum's view is kind of saying the same thing: our engines should rev toward the high end of the range during the day, low end at night. It could be that your most optimal level might be a little skewed from the range. Your symptoms are probably more informative than your test results in a way.

If your fatigue forced you out of work, is it more exhaustion than fatigue? I like to make the distinction because they are extreme levels for me. Fatigue is to be expected - some of us are seriously ill and this treatment is a nightmare. But even those who are doing well with treatment suffer fatigue at times.

But exhaustion is when you can't work, get out of bed, can stand in the kitchen only long enough to make a meal. Can barely lift your arms above your head to wash your hair in the shower... or can't do normal activities w/out crashing. And exhaustion suggests that your body is completely overwhelmed and that's a red flag. Maybe you're being to aggressive, pushing too hard, have high viral load, aren't nourishing yourself, etc...

-p
Posted 5/5/2017 12:56 AM (GMT 0)

Pirouette said...


So while many people still think IV is for the worst cases, more and more, fewer people are doing IV and I really only recommend IV for those with GI issues that might prevent proper absorption and who might be vulnerable to increased GI damage from oral abx. IV is an added complexity most of us don't need.

For people who have anxiety all day or feel "jacked up", they're getting too much cortisol from too much production, overstimulation of adrenals due to the stress trigger. This can also be serious but it's generally at an earlier stage of adrenal fatigue, since there is still cortisol being pumped out. This is a good red flag to rebalance before reserves get too low, but it does drain reserves so it's important to treat.

I'm hypothyroid but I've been on Naturethroid for several years. I recently increased my dose, still trying to tweak it. And it's a good thing to revisit as you move along treatment milestones as your body systems are dynamic and change over the course of illness and recovery.

This is what you posted about your thyroid levels:
"Jacob teitelbaum and sttm say that cortisol should be in the upper part of the range during the day and way low at night for optimal health. My cortisol is lower part of the reference range in the day, then way above range at 5pm, then slightly above range at 10 pm."

There are a few of us here who feel the medical industry's range is off and that a healthy range for some people should be shifted a little higher. Your symptoms are probably more informative than your test results in a way.

If your fatigue forced you out of work, is it more exhaustion than fatigue? I like to make the distinction because they are extreme levels for me. Fatigue is to be expected - some of us are seriously ill and this treatment is a nightmare. But even those who are doing well with treatment suffer fatigue at times.

But exhaustion is when you can't work, get out of bed, can stand in the kitchen only long enough to make a meal. Can barely lift your arms above your head to wash your hair in the shower... or can't do normal activities w/out crashing. And exhaustion suggests that your body is completely overwhelmed and that's a red flag. Maybe you're being to aggressive, pushing too hard, have high viral load, aren't nourishing yourself, etc...

-p


Yeah, I fear iv abx. Largely because I'd have to pay out of pocket as no insurance doctor will treat me for Lymeco. With the potential complications, that could eat up my nest egg prematurely.

When my ND tried to treat my adrenals with cortisol Manager and hpa adapt, it made me all wired / jacked up. That scared me and seemed counter productive. I don't want to burn them out and that stuff, along with ashwagandha, and these antimicrobial herbs does the same thing. I'm reluctant to push through for fear of really screwing up my adrenals. It's odd that doxycycline and artemesinin didn't do that to me.

As for my fatigue, it's a general overall malaise with exertion intolerance. I'm not bed fast, but I run out of gas easily. I can putter around the house a little, but am mostly sedentary. Last month I had a 3xeeek period where I felt more energy, I was doing g some yoga and light theraband exercises and it felt soooo good to move my body and use my muscles. I must have over done it cuz now I'm back in the pits.

Tomorrow, I'll get up the guts to try this new "adreset". Doc said if I react poorly, to take it homeopathically, ie micro dosing. Fingers crossed.
Posted 5/5/2017 1:06 AM (GMT 0)
I tested my neurotransmitter levels along w/ adrenal levels. Not only was adrenal basically flatlined but all dozen or so of my neurotransmitter levels were off-the-charts too high or low. Nothing was in normal range.

Then my ND and I started supplementing to rebalance. Everything I tried just shifted levels to the opposite extreme. It was a very expensive, time-consuming, frustrating and failed effort. I stopped seeing her because I moved away, thankfully. We would never have figured out the DNA mutations or Lyme & Co issues. I did that on my own, thankfully, but only after getting really sick and through other circumstances more revealing symptoms emerged.

Some people have had luck w/ adding various supplements. I never did. I really hope you have some success.

There are theories about no exercise, minimal exercise, specific types of exercise to do or avoid, frequency of exercise, etc. I have had periods where I felt OK and did some activities but mostly I overdid it and suffered setbacks. Finally, I decided not to do anything too physical and it has helped. Trial-and-error wins again.

Not too many of us are doing homeopathics, my LLMD suggest it's generally not helpful but some people are doing great with them - particularly detoxing. Please let us know how you're doing on them - always interested in personal stories.

-p
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