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Posted 10/24/2016 1:31 PM (GMT -5)
Just wondering if anyone with Lyme has also had issues with their Endocrine system, specifically the Adrenal and the Pituitary glands ? High Cortisol, high Prolactin, high ACTH, etc... Thank you !!!
Posted 10/24/2016 1:43 PM (GMT -5)
Yup, low cortisol and low DHEA for me.
Posted 10/24/2016 1:51 PM (GMT -5)
Jeanne, welcome to our community and thanks for reaching out and asking this question. I didn't have any of the blood work that would show this, but my sympoms were a good match for something going on with my HPA axis. If you haven't already, I'd highly recommend taking a look at this community's orientation link. Packed full of useful info. www.healingwell.com/community/default.aspx?f=30&m=1606610. Once again, welcome to the community.
Posted 10/24/2016 2:05 PM (GMT -5)
Hi Jeanne T!
Welcome to our community! I'm so glad you found us.

As Mutlifacetedme said, please do have a look through our "New to Lyme?" thread that sits at the top of the forum - she provided a link for you. =) It's packed full of helpful information.

Lyme can and does affect every aspect of the body and it's functioning, if given the time. My adrenals have crashed, and I have very low DHEA so I have to supplement them as well as my thyroid.

Have you been diagnosed with Lyme or suspect you may have it? Not all adrenal patients have Lyme.

If you do have Lyme, or suspect you have Lyme, you will need to find a Lyme Literate Medical doctor (LLMD) so that you are getting treatment by someone that knows more than most about these infections and how to properly treat them so we can heal and get on with our life.
Posted 10/24/2016 2:11 PM (GMT -5)
Hi Jeanne - welcome!

I had high cortisol several months after lyme symptoms started.

My estrogen and progesterone 'tanked' as well. Now, I was at that 'time' of life...but it was interesting that I never had any peri-menopause symptoms prior to my periods just halting - after lyme symptoms..never had another period.

Recently found I have low DHEA.

When my cortisol was high, my ACTH was not though...
You should have further testing done...

I had a dexamethasone suppression test...I believe that was to rule out Cushing's disease.

I also had an mri of my pituitary gland...to make sure everything was alright there. (That one was not recommended...but I chose to have it done)
Posted 10/24/2016 4:21 PM (GMT -5)
I had high cortisol but as things progress, you fall into low cortisol. That's where I am now. Treating with adrenal glandulars.
Posted 10/24/2016 4:25 PM (GMT -5)
I have extremely high morning cortisol. Found out through 4 point saliva test. I hate the mornings because I feel so jittery.
Posted 10/25/2016 11:05 AM (GMT -5)
Thanks to all for your responses, they are greatly appreciated. I am reaching out for my daughter, she has been tested 2X for Lyme using a TBD-4 blood panel, which were both negative. She presented about 4-5 mths ago with achy joints, muscle weakness, trouble sleeping and some issues with Tachycardia. Here's what other testing has shown:
Low B12
Low D
Low Iron
Low Iron Saturation
High Cortisol
High Prolactin
High ACTH
* waiting on other Endo blood results

Initially treated with 2 wks of Doxy with no changes. Treating now with a Naturopath who has her taking Cat's Claw, Oil of Oregano, Beta Glucan and an Enzyme combination. Also Theanine with Relora to aid in sleep. She has only been on this protocol for a few weeks...no changes yet. Taking Vit supplements also to treat the deficiencies. about 5 yrs ago, at age 18, she had 2 Parathyroids removed due to Hyperparathyroidism. Although her physician believes she has Lyme based on her clinical symptoms, I am not convinced %100 that her Endocrine system is not the root problem. Waiting for more results before proceeding with any other treatment options. Any info would be wonderful. Thank you !!!
Posted 10/25/2016 11:12 AM (GMT -5)
Clinical symptom diagnosis is pretty darn reliable.

You can ask for an Igenex test. They are probably the most reliable blood test for lyme. I failed my regular Elisa lab test for lyme. I am glad that I got confirmation from the Igenex test and started treatment when I did. Also very glad that my lyme literate medical doctor started me on antibiotics while waiting for the Igenex test results.
Posted 10/25/2016 11:19 AM (GMT -5)
Has your daughter had a "herx" reaction to the cats claw? How much is she taking? If she has a reaction where she is feeling and increase in symptoms, this is a great sign, it means something is dying. It will take at least two months of herbal treatment before she begins to notice a difference. It takes time.
Posted 10/25/2016 11:48 AM (GMT -5)

multifacetedme said...
Has your daughter had a "herx" reaction to the cats claw? How much is she taking? If she has a reaction where she is feeling and increase in symptoms, this is a great sign, it means something is dying. It will take at least two months of herbal treatment before she begins to notice a difference. It takes time.

I've said this before on here, but several prominent Lyme doctors believe that herxing does not always mean something is dying. Often, it's just your immune system doing a better job at recognizing microbial intruders and creating inflammation, even if that inflammation's not killing anything.

This is especially true with something like Cat's Claw, which isn't killing bacteria directly, but is instead boosting your immune capabilities.
Posted 10/25/2016 1:13 PM (GMT -5)
But, Mustard Seed - boosting the immune system could still result in the die-off of bacteria...which the produces endotoxins (resulting in a herx)
Posted 10/25/2016 2:55 PM (GMT -5)

Girlie said...
But, Mustard Seed - boosting the immune system could still result in the die-off of bacteria...which the produces endotoxins (resulting in a herx)

Yup it definitely could.
The most accurate way to put is: if you're herxing, you might be killing something. It's a good sign either way.
Posted 10/26/2016 7:37 AM (GMT -5)
Thank you for the info ! She added Teasel into her protocol per the Naturopath and even lower doses are causing crushing headaches and increased tachycardia. Not sure if that's due to herxing or her body just isn't tolerating it. Have any of you tried teasel root and had a similar reaction ?
Posted 10/26/2016 8:09 AM (GMT -5)
What all is she doing for detoxing? This is an incredibly important part of our healing because as the bacteria die, they produce toxins, and many times our bodies have significant trouble being able to detox them out fast enough to not have an overload of them, which increase our current symptoms or bring on new symptoms.

Here is a really good site with detoxing suggestions when the person has these infections:www.tiredoflyme.com/detox-methods.html

Also, did she start off on a low dose, or a larger dose. We always encourage members to start off on very low doses and work their way up to full doses to help avoid serious herxing.
Posted 10/26/2016 8:27 AM (GMT -5)
I use teasel. Low dose, 12 or so drops 2-3 times per day. From what I have read it is not any more effective at a high dose but is recommended at a low dose, as what it does (apparently) is coax the spirochetes out of hiding, and then the immune system can pounce.

The other thing to check, since I see low vit D, is the parathyroid. Hyperparathyroidism has MANY overlapping symptoms with Lyme, including the joints, bone pain, sleep issues, and tachycardia. What's her calcium level? It can vary quite a bit, but if it's consistently around or above 10, she should have her PTH (parathyroid hormone) checked. If it's borderline or high, wait a month and check calcium and PTH again. If still high, get it taken care of, do not wait. The cure is surgical removal of the adenoma, and at the right place it's pretty straightforward. It's another one of those diseases of which most doctors, including endocrinologists who should know better, are unaware. Check out parathyroid.com, Norman parathyroid clinic.
Posted 10/26/2016 10:19 AM (GMT -5)
As far as detoxing goes she has been taking baths with Epsom Salts and Hydrogen Peroxide, maybe not often enough. She started the Teasel at 5 drops per day... on day 3 she had a massive headache and her tachycardia was pretty bad. She is a full-time Vet Tech which is a physically demanding job and although we want to get the bad stuff out, she still needs to function. So I guess the key with Teasel is to start at 1-2 drops and work up. As far as the Parathyroids... I posted in an earlier thread that she had two removed 5 yrs ago due to Hyperparathyroidism. Her symptoms now are very similar that's why we are also seeing an Endo. Her PTH and Calcium have been checked recently and are both normal. However, her Cortisol, Prolactin and ACTH are all high. As always, thank you all so much for the input.
Posted 10/26/2016 1:19 PM (GMT -5)
Being a full time Vet Tech...I'm wondering about Bartonella.

It is a coinfection of Lyme disease, but cats also carry it.

It might be a good idea to look into that.

Did your daughter have complete symptom resolution after her parathyroid surgery...and now symptoms started again?
Posted 10/27/2016 7:19 PM (GMT -5)
I will definitely have her look into the Bartonella. I have ordered a test kit from IgeneX, I've heard it's pretty accurate as far as blood tests go. They also have co-infection kits for testing. Her symptoms did resolve after the surgery and yes now her symptoms are very similar to last time. Still waiting on additional blood tests results from the Endo. Thank you so much ! Hope you are feeling well. Sounds like you've all been through a lot with this disease.
Posted 10/28/2016 1:24 AM (GMT -5)
Oh yea ..it effects ever single system
Posted 10/28/2016 1:36 AM (GMT -5)

Jeanne T said...
I will definitely have her look into the Bartonella. I have ordered a test kit from IgeneX, I've heard it's pretty accurate as far as blood tests go. They also have co-infection kits for testing. Her symptoms did resolve after the surgery and yes now her symptoms are very similar to last time. Still waiting on additional blood tests results from the Endo. Thank you so much ! Hope you are feeling well. Sounds like you've all been through a lot with this disease.

Igenex is one of the better testing facilities for Tick-borne infections...but still lots of false negatives, unfortunately.

For lyme the best bang for your buck is the Western Blot Igm and IgG for total $210.

The co-infection testing is even less unreliable/inaccurate than the Lyme testing.
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