nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I tested positive for thyroid anti-bodies in 2010. Although I had felt sluggish and tired since childhood, I also had bouts of insomnia. Doctors told me nothing was wrong with me.
When I developed thyroid nodules I was put on thyroid meds. I asked the endocrinologist if it was possible for me to be hypo and occasionally go hyper. He said no, you would be one or the other.
How could an endocrinologist be so stupid? When your thyroid is under attack it releases hormones which can cause you to go hyper. I went through my whole life miserable.
LDN helps a lot. I am off thyroid meds and not having such bad flares. I still get insomnia but not as bad as before. Protomyxzoa can cause auto immune disease and it causes insomnia. I don't know what is causing what these days. I don't know if I have had PR longer than I have had lyme.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
Are you still on LDN? I have tried it several times but stopped due to a big increase in pain.
Posts: 1748 | From United States | Registered: Dec 2011
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posted
MANY who have Hashimoto's are also celiacs or gluten intolerant.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
I tested negative for celiacs, but have been gluten free for over 6 months.
Posts: 1748 | From United States | Registered: Dec 2011
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I am still on LDN and I don't have any trouble with gluten or lactose. I had 23&ME testing and that indicates I have no problem with either of these as well.
LDN is great. I am so grateful I found out about it - on here of course!
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
I have Hashimoto's...My PCP and endo think it's just "weird" that I am a 30 year old male that has it with no family history of thyroid problems...Nobody wants to look more into...just feed me synthetic thyroid horomone...and my TSH still jumps around like crazy...anyway, what is LDN?
Posts: 222 | From NH | Registered: Mar 2011
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I was recently diagnosed with Hashomoto's. I am taking 5 mcg of generic cytomel daily.
I don't feel any different taking it.
I follow "Thyroid Pharmacist, Dr. Izabella Wentz" on facebook.
She wrote a book about the root causes of Hashimoto's. She says if you identify the root cause(s) and remove them, the Hashimito's can resolve.
I like how she thinks and her info makes a lot of sense. In many cases it can be gluten, dairy, other food sensitivities and gut issues like leaky gut and gut dysbiosis that causes the problem.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
This site has slot of great info as well. I just ordered the book http://www.stopthethyroidmadness.com/ nhlymeguy synthetic thyroid medication may not be what you need. This site explains why. Delrator I will check out that FB. Page thanks!
posted
I will be posting all of my endocrine failures soon. Have a Doc's appt. Friday for final test results. Entire endocrine with Pituitary stimulation blood work and MRI findings. I hope this info helps.
This is what we already know my thyroid is no longer functioning at all. Glad I have been on synthroid.
The endocrinologist of 5 yrs. ago. Said nothing about my lab described "mediocre" Cortisol levels.
They are now low.
My immune system is a mess. Natural killer cells extremely low. B and T cells are low.
So if you go back to Dr.B's guidelines. If you suspect Neuro Lyme and you look hard enough at the pituitary/hypothalmus. Test it, stimulate it and MRI it. It will show damage.
It appears as if we now have to find LL Endocrinologists as well.
A young man whom I have been helping out and is WB pos had a spect scan.
Pre-treatment his Hypothalmus/Pituitary are described as white hot.
His frontal lobe is described as bright.
Post treatment I have frontal lobe lesions. I am sure they would have been described as bright 10 yrs. ago.
My Pituitary/hypothalmus would have been described as hot.
So I now understand the pre and post treatment damage this insidious disease causes. I at times feel like a lab rat. I just hope it helps the next guy.
I am sure many of us have these same issues. We just need push our docs to test and evaluate the entire system.
If they won't find someone who will. If all of your endocrine levels are teetering just above the low level in relation to scale being used. It needs to be investigated further.
I have been up and down living in limbo state since treatment stopped abx treatment stopped.
Just be patient and alert.
God bless.
Posts: 221 | From S. Florida/Massachusetts | Registered: Mar 2005
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posted
I will be posting all of my endocrine failures soon. Have a Doc's appt. Friday for final test results. Entire endocrine with Pituitary stimulation blood work and MRI findings. I hope this info helps.
This is what we already know my thyroid is no longer functioning at all. Glad I have been on synthroid.
The endocrinologist of 5 yrs. ago. Said nothing about my lab described "mediocre" Cortisol levels.
They are now low.
My immune system is a mess. Natural killer cells extremely low. B and T cells are low.
So if you go back to Dr.B's guidelines. If you suspect Neuro Lyme and you look hard enough at the pituitary/hypothalmus. Test it, stimulate it and MRI it. It will show damage.
It appears as if we now have to find LL Endocrinologists as well.
A young man whom I have been helping out and is WB pos had a spect scan.
Pre-treatment his Hypothalmus/Pituitary are described as white hot.
His frontal lobe is described as bright.
Post treatment I have frontal lobe lesions. I am sure they would have been described as bright 10 yrs. ago.
My Pituitary/hypothalmus would have been described as hot.
So I now understand the pre and post treatment damage this insidious disease causes. I at times feel like a lab rat. I just hope it helps the next guy.
I am sure many of us have these same issues. We just need push our docs to test and evaluate the entire system.
If they won't find someone who will. If all of your endocrine levels are teetering just above the low level in relation to scale being used. It needs to be investigated further.
I have been up and down living in limbo state since treatment stopped abx treatment stopped.
Just be patient and alert.
God bless.
Posts: 221 | From S. Florida/Massachusetts | Registered: Mar 2005
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posted
there is a great doc in Salt Lake City who specializes in Hashimotos disease and he has good success in treating it. He has a book on Amazon about it. I highly recommend it.
Dr Alexander Haskell "Hope for Hashimotos"
Posts: 803 | From USA | Registered: Oct 2013
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I also like to follow Suzy Cohen (America's Pharmacist) on facebook. She posts a lot of good info about Lyme, thyroid issues, etc.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
On Thyroid Pharmacist, Dr Izabella Wentz's facebook page, today she has great info posted on "overcoming thyroid fatigue".
She is constantly posting detailed info that is helpful.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
There's also Deborah Metzger MD Endocrinologist. She treats patients with chronic lyme. She completely get the endoc system & lyme effect on patients.
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
If you have any kind of auto immune disease, I urge you to try Low Dose Naltrexone. It was originally produced in the late 1980's as a treatment for addiction by blocking opiate receptors so addicts could not get the high.
Later it was discovered that taking a fraction of the dose would block receptors for a few hours, which triggered the body to produce massive amounts of endorphins. The endorphins boost the immune system.
LDN has been shown to increase the production of REGULATORY T cells 300%. These are the cells that call off the auto immune attacks.
As LDN is a cheap generic drug, pharma corporations have no incentive to fund trials. Presently there have been trials funded privately for MS and Crohn's disease, which are very successful. 2/3 of Crohn's patients went into remission and nearly 90% benefited. When/if it is approved for MS, drug companies will lose 9 BILLION dollars a year for that condition alone!
LDN is very effective against Hashimoto's disease. I am off thyroid hormone. It is also good for boosting the immune system to help fight Lyme.
My son was diagnosed with type one diabetes and since starting LDN he has had no further loss of beta cell function. He would be considered in remission.
WHen you start it, if you have protomyszoa it can cause a herx that you might confuse with side effects of the drug. Treat the PR first and then try again. It will also increase yeast at first so you need to get that under control by taking something like Diflucan.
LDN is a miracle I totally believe in. There are thousands of people out there spreading their stories to encourage others to give it a try. No one is making any money, not even the person(s) who discovered how it works in low doses. They are/were truly altruistic angels.
Auto immune attacks can be caused by many things like PR and other infections or allergies. You need to find the trigger.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Neff, my thyroid is dead. Ultra sounds show no blood flow to that organ. I've been hypo for about 27 yrs.
Of course that's what thyroid meds will do overtime, kill the organ.
I believe my immune system is attacking my thyroid because the ultra sound shows a dark area in the gland (non-cancerous looking).
I think it is a group of bacteria hanging out there and having no worries in the world, no blood flow, no oxygen and they are safe & cozy.
But LDN has been on my list of things to explore and see if it would be of benefit for me on some other levels.
Lyme is an auto-immune disease. The establishment just hasn't told the truth yet. They will get it some day.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
I wish i could understand all of this
What is the test for hashimotos
Is hash...the same as hypothyroid
I thought bb infection caused hypothyroid and/or hashimotos...if so,wouldnt txing bb cure hash?
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
lpkayak,
This website has a lot of information that can help explain Hashimoto's. It is a form of hypothyroidism where the body attacks the thyroid.
Be sure to check out her blog page...scroll down that page and on the right are some very interesting topics relating to Hashimoto's that she has blogged about.
Also check out the FAQ's and her sample chapter of her book, etc.
I suspect that a lot of people with chronic infections have Hashimoto's and don't know it.
One of Izabella Wentz's answers to the FAQ's addresses testing:
"90-95% of cases of hypothyroidism in countries that add iodine to salt are caused by Hashimoto's (US, Europe, Canada, Australia). The best tests are the Thyroid Peroxidase (TPO) Antibodies and the TG (Thyroglobulin) Antibodies. These antibodies are elevated for many years before a change in TSH is seen. Antibodies are elevated in 90% of people with Hashimoto's. You can have your physician order the antibodies or you can order the test yourself through www.mylabsforlife.com. Please check out my blog about TPO antibodies here." http://www.thyroidpharmacist.com/blog/hashimotos-and-tpo-antibodies
Treating lyme will not necessarily reverse the Hashimoto's because you have to address all of the contributing causes, not just infection.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Ty very much
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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