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Posted 4/11/2016 1:57 PM (GMT 0)
That my Hashimotos has my immune system that runned down that I only tested positive on band 41(IGeneX)? Or that Lyme caused my Hashimotos? I clearly have never had syphilis, and though my teeth arent great, I highly doubt I have dental bacteria that would set it off(no gum disease, no pain or absess, etc). My Hashimotos is sort of bad, TPO antibodies near 800 that dont budge even though im on thyroid meds and numbers good.

As I stated before, I took Dr Horowitz test and scored a 109. Pretty high. Some of the symptoms on his test could be from Hashimotos, but the majority are not. Ive been off work a week with extreme lethargy and muscle aches and joint pain. Brain fog. And then my mom had a stroke and my anxiety went through the roof. But shes home now, cant remember anything short term but shes home.

Anyhow, what do you think? Oh, I do take LDN to help boost my immune system, but so far a year later it isnt helping much. Thanks.
Posted 4/11/2016 2:05 PM (GMT 0)
Forgive me for not remembering, but did you go to a lyme doctor? What did the doctor say?
Posted 4/11/2016 2:17 PM (GMT 0)
No I didnt go to my LLMD yet. Soonest they could get me in is May. When I talked to staff they said that many other their patients test positive on one band. But that doesnt answer the question.

It seems theres a lot of topics about band 41 only result, but no one knows why. Ive never read if theres an angle between Hashimotos and Lyme. I did read theres a possibility of lowered immune system causing the body to not produce antibodies, but is that a guess or fact? Im just seeking answers, or at least more info before I go to the docs. I dont wanna take any doctors answers as the gospel. I went through enough having a doctor tell me jothings wrong hntil I pushed enough to get proper testing and found I had Hashimotos. I have a lot of Lyme and co infection symptoms, but only band 41 shows. I hunt, an outdoorsman, live in PA. Everything points to it, but my GP says I dont have it, yet cant explain all my non Hashimotos symptoms.
Posted 4/11/2016 2:40 PM (GMT 0)
One possible trigger for Hashimoto's is infections....Yersinia is the most common trigger but there is much written in Lyme books about Lyme causing thyroid issues.

Dr. Burrascano mentions this in his 2008 "Diagnostic Hints and Treatment Guidelines" in the pituitary section of page 6 here:

www.ilads.org/lyme/B_guidelines_12_17_08.pdf

"Pituitary and other endocrine abnormalities are far more common than generally realized. Evaluate fully,
including growth hormone levels. Quite often, a full battery of provocative tests is in order to fully define the
problem. When testing the thyroid, measure free T3 and free T4 levels and TSH, and nuclear scanning and
testing for autoantibodies may be necessary.

Activation of the inflammatory cascade has been implicated in blockade of cellular hormone receptors. One
example of this is insulin resistance; clinical hypothyroidism can result from receptor blockade and thus
hypothyroidism can exist despite normal serum hormone levels. These may partly account for the dyslipidemia and weight gain that is noted in 80% of chronic Lyme patients."


The reason many people don't test positive on more bands is due to Lyme's suppression of the immune system - the effects of which are worsened in the presence of coinfections (especially Bartonella).

The Western Blot measures antibody response. Well, a suppressed immune system isn't going to mount a significant antibody response.

If Lyme is to blame for your Hashi's, proper treatment of the infection could very well result in an improvement in your thyroid function.

Mainstream doctors just haven't had the training to recognize Lyme even though it's so prevalent. That's why we need LLMD's.
Posted 4/11/2016 3:17 PM (GMT 0)
Thanks cd3764! All my symptoms started in spring of 2014. Even though my thyroid disease is being treated, nothing we do has gotten rid of symptoms, actually theyve all gotten worse. Though my thyroid numbers look good. Thats when I started thinking it was something else, and a Lyme patient started asking me questions. It all points to Lyme or co infections. My sed rate has been above range ever since 2014. Constant abdominal pain(left side) and muscle and joint pains are the main symptoms, but have had just about every symptom you can imagine. Scariest is skipped beats. Panic attacks have all but gone, but still have anxiety. The list is way too long. Im hoping my LLMD can figure something out. Thanks again.
Posted 4/11/2016 3:18 PM (GMT 0)
I can tell you that Lyme has led to my thyroid being low. It has gotten progressively lower over the course of my treatment, though. I also have brain fog as my primary symptom.

Here are my issues:
-Primary symptom of lyme is brain fog. Other neurological issues as well- light sensitivity, tingling/pins and needles in arms and hands especially at night, etc. Lots of others, but these are the major ones.
-Lack of menstrual cycle, worse sense treatment. (Hormones out of whack)
-Low Thryoid, worse sense treatment.

Here is what I have learned:

1. Lyme and toxins in the brain can cause dysregulation of the hypothalamus.
2. The hypothalamus is in charge of your biological clock and regulates hormones, your adrenals, wake/sleep cycles, and your thyroid among other things.

So, hashimotos could be caused by lyme disease - and maybe treating for lyme will help. My questions is WHY have I developed a low thyroid after being on treatment for lyme for 8 months? You'd think the brain fog would get better. I'm open to hearing thoughts about this?

My own symptoms were primarily triggered by over-exersizing and the stress of the impending school year (I'm a teacher). My lyme coincidentally started the day before the first day of school. This leads me to believe that maybe my hypothalamus became dys-regulated due to excess cortisol and allowed the lyme to proliferate. So it could also be that the immune response caused by your hashimotos is allowing the lyme to thrive.

I wish I could help more - I'm just trying to piece everything together myself.

I also suspect that I have candida at play, even though my tests came back negative for it, as some of my first symptoms were rashes around my eyes and itching legs.
Posted 4/11/2016 3:28 PM (GMT 0)
I would start detoxing before you see the doctor. Detoxing will not hurt you or change your test results if he requires more testing.

Drink lemon water. I buy organic lemon juice and keep it in the fridge and just add a splash to my water. You can do a little or do a lot. Up to your taste buds.

Start eating healthy. No junk, no fast. Need a quick meal, grab an apple or celery sticks with nut butter.

Your constant low ab pain might be alleviated with lemon water. It is good for your liver and kidneys.

Also, you want to make sure you are going No. 2 consistently. Do not get sluggish or constipated. My great grandma always said, "an apple a day keeps the doctor away." Apples are good in fiber and also high in water content - good for keeping regular.

I would also keep a journal. The doctor will ask you things like, "how long has that pain been there?" It is nice to have a journal for an accurate answer. We all know how time can fly.

Those are some hints to start on before you get to the doctor. Good luck, if you have more questions, ask away and happy healing.
Posted 4/11/2016 3:32 PM (GMT 0)
Did you test with IGeneX when you got the band 41? Sorry if you've posted on this before, I can't recall.
Posted 4/11/2016 3:35 PM (GMT 0)
Lyme disease caused Hashi's for me - and it healed when my Lyme healed the first time around.

And yes, Lyme inhibiting (lowering) the immune function is a proven fact:
www.karlmcmanusfoundation.org.au/immune-response-to-borrelia

www.ncbi.nlm.nih.gov/pmc/articles/PMC3636972/
Posted 4/11/2016 3:50 PM (GMT 0)
Thanks all! Yes I tested with IGeneX. I was ELISA neg but pushed my GP into signing for the Western Blot. After having every test under the sun and nothing but Hashimotos showing up, I can only think its Lyme or co infection due to my symptoms. If it is, looking back, I may have had this for years. One of my symptoms ive had for years, I cant stand the heat during the summer. Heck I used to be a roofer years ago and loved the heat. For about 10 yrs now summers kill me. I have to be in the ac. But I always attributed it to getting older. But since 2014 when I had a sharp shooting electric shock type pain in my neck and across my chest, all my symptoms got worse.

I feel im getting closer to finding the answer. Im a long way from being told its just anxiety or GERD. My doc doesnt question me much anymore. I either upset him or he actually sees all my symptoms cant be simply thyroid related. This last week its bad. All I wanna do is sleep. Im almost bankrupt and the thought of an LLMD and their costs is draining too. I just have to keep in mind May isnt that far away, and if he starts treating me things might change for the better.
Posted 4/11/2016 5:01 PM (GMT 0)
trader758 I am sure your LLMD will figure it out and give you apporpriate treatment. Good luck!

Kickin'Lyme, have your hormonal issues got better after you start treating Lyme?

Is dysregulation of the hypothalamus permanent, or it can function normal again after you get rid of bacteria?
Posted 4/11/2016 5:20 PM (GMT 0)
I wish I knew the answer as to whether or not the dysfunction is permanent - I hope not! My LLMD believes these things will improve once I am free of lyme.

As of yet, my hormones have not gotten better with treatment. My thyroid has gotten worse, as it was normal/low at the start of treatment but now it is definitely low. He tells me that this is most likely due to die-off of toxins placing more stress on that area of my brain. My WBC count is also high now (where it was normal at the start of treatment), so I think my own immune system is starting to take part in the fight which could also cause the hypothalamus to shut down further to go into "survival mode". Hopefully he is right! My naturopath tells me that she sees this happen with long-term antibiotics, so I also wonder if it could be a result of abx rather than lyme toxins.

I will definitely post as I learn more about this - it's crazy how interconnected everything is and how lyme can cause so many problems!
Posted 4/11/2016 5:21 PM (GMT 0)
blueberry muffin - The dysregulation of the hypothalamus should function normal again after effective treatment.

I believe the dysautonomia I have (Pots, for example) could be from lyme and/or co's affecting the hypothalamus. ...and will resolve along with the rest of the symptoms, once fully treated.
Posted 4/11/2016 5:25 PM (GMT 0)
Trader - you mentioned that your TPO antibodies haven't budged since thyroid treatment.

Someone (maybe Astroman?)posted that treatment doesn't necessarily bring down those antibodies -
that once they're raised, they can remain raised.

Hopefully someone will confirm that....
Posted 4/11/2016 5:53 PM (GMT 0)
Hey Girlie. Yeah, ive never read any correlation between TPO numbers and progression of attack. The numbers really dont tell you what stage of destruction is going on. My doctor seems to think it does, but could never explain why. I thought about it a million times and high numbers, or numbers that dont budge, have to mean something. I just never found what. All I could do is try Selenium or decrease inflammation and see if it comes down. And they didnt. Thats part of the reason I think its more to it that Hashimotos. But if we all had the answer to autoimmune we'd be curing people. Right now im putting my thyroid on the back burner. Keep taking my meds and watching numbers, but putting more effort into Lyme and see where this takes me. Hopefully its the right path.
Posted 4/11/2016 6:12 PM (GMT 0)
For SIX years my MD focused only on my thyroid issue. She kept saying "you dont have Lyme, your test was CDC negative". BUT SIX YEARS of monitoring my thyroid and adjusting my meds, did very little, IF ANYTHING!

In 2014 I finally went to a 'Lyme literate' ND. She never did actually say "Its Lyme and Co's", but treated me for multiple systems infections, using all natural herbal antibiotics, NAC, and other supplemnts. Heavy metals detox was also a major part of my treatment.

Two things happened last summer/early fall. 1) my ND quit and I was without a Dr for two months and had to get re-established with a new ND who wanted to start ALL OVER AS IF Id never been in any treatment. She made that decision based on event number 2) I came home to Oregon, from visiting family in Marland, came home with a peciliar bulls-eye that was very pale in color, but it was a bug bite with a ring!

Im mentioning all of this, because my LYME TESTS WERE STILL NEGATIVE!
I also tested high on Dr Horowitz Lyme eval=a score of 99(ifni remeber right)
Posted 4/11/2016 6:30 PM (GMT 0)
Hi sweetpeaisme, you mentioned something that I NEED to get checked but havent been to date. Heavy metals. I cant say what industry im in, thought it is government. We had an issue where some folks were over exposed to cadmium. I worked in those areas, but because I didnt work in that area at that specific time, they never tested me. But we all know others, me included, were exposed at some level. Thanks for reminding me to add this to my list!
Posted 4/11/2016 6:43 PM (GMT 0)
I did Drs Data heavy metals test, and it was only $60. You collect urine over 6 hrs, then shake it up and pour into a smaller vile that you send to them. You could actually order this test on your own! They include informational booklet with your results
Posted 4/12/2016 2:00 AM (GMT 0)
TPO Ab's are markers of thyroid inflammation. Healthy people can have measurable levels sometimes.

It's levels in the high hundreds/thousands that are more often seen in Hashi's and lower numbers in Graves'.

There's an extensive school of thought that gluten is to blame for autoimmune diseases in general...

As an almost 10-yr thyroid patient who had to educate herself to stop suffering needlessly under the hands of clueless doctors, I offer help with thyroid labs interpretation for anyone who might be interested.

Hopefully, your doctor is checking. your Free T4 (T4 or thyroxine, free, direct) and Free T3 (tri-iodothyronine, free, serum) levels - these are the only tests that matter.

Post your results with ranges and you'll see if your doctor is interpreting your levels properly. "Normal" (aka in-range) isn't good enough.

Oh, yes, Lyme can definitely mess with the thyroid - it's been doing that with mine ever since I started doxy after the tick bite. I just can't seem to get dose increases fast enough these days.
Posted 4/12/2016 2:08 AM (GMT 0)
OK, heres my latest from early March...

Free T4 1.46 range .89-1.76
Free T3 4.0 " 2.3-4.2
TSH 1.270 " .350-5.500
T3Reverse 9 " 8-25
TPO 793 " <9


EDIT**

Personally, strictly for myself, I dont see a difference with gluten free. Many people have. Some have even stated it "cured" them. Ill stay short of calling it a fad, only because I know people who have celiac and deal with gluten, but it didnt do anything for me in 6 months. Maybe it takes longer??

Post Edited (trader758) : 4/11/2016 8:12:02 PM (GMT-6)

Posted 4/12/2016 2:27 AM (GMT 0)
Glad you had thyroid results to share.

I'll tell you.....some people would feel fine with your levels and others, such as myself, would be besieged with symptoms of hypothyroidism.

Not that TSH is a reliable indicator of thyroid function but, healthy people have TSH 1.0 or lower. One might say your level isn't that far off. Well, if you wear a size 11 shoe, how does a size 10.5 feel?

What really counts are those Free T3 and Free T4 levels.

Your Free T3 level measures active hormone and your level is really good.

Your Free T4 level measures storage hormone that the body converts into T3. about 20% of that conversion happens in the thyroid....the rest happens in various body tissues.

If I had your Free T4 level, I'd have muscle aches, slow digestion, brain fog, joint pain, fatigue, no motivation...give me time (or let me check my journal lol) and I can tell you more.

Healthy people have Free T4 levels in the upper quarter of the range. Based upon your lab's range, that means Free T4 1.6. Your Free T4 level isn't that far off but remember the shoe ;)

People taking synthetic thyroid meds usually feel best with their Free T4 level near the high end of the range if not slightly over-range.

People taking desiccated thyroid usually feel well as long as their Free T4 level is at least mid-range. Some need to add T4 to their desiccated thyroid to eliminate those final symptoms.

What thyroid meds do you take? You might want to try a little more T4.
Posted 4/12/2016 2:33 AM (GMT 0)
NP Thyroid, Acella. Weird part...I only take 30mg with 60 every third day. Everyone tells me I need more. But from my numbers it seems my thyroid is still working pretty good.
Posted 4/12/2016 3:08 AM (GMT 0)
Just a thought but did you ever do an iodine test-
I did one once but I cant remember the lab. It was a urine test-cheap and could be part of the issue.
Most people with chromic disease have several issues-its not just the tick.
Heavy metals could easily be part of the picture-60 bucks for a test is cheap.
I know you said you have good teeth and gums-my conventional dds use to clap when she saw my teeth-they looked perfect from the gumline up. When they pulled my wisdom teeth they were blackish-green or greenish black and smelled like crap! I really didn't believe Dr Y or this new biological dds but knew I was dying. Much to my surprise. FYI- dental issues often do not show up on xrays or cat scans-took my two minutes on google to find that little fact
Anyway I think we can get better when we ask ourselves why were we open to lyme and other bugs- why didn't a couple weeks of antibiotics cure me? Most people don't get lyme and if they do they are cured with a couple weeks of antibiotics. Something or somethings cased us to become weaker and open to disease.
Anyway heavy metals-very possible- lack of iodine-possible. Like most of us I would guess there is more-best of luck the body does heal

Post Edited (magoo2) : 4/12/2016 8:39:49 PM (GMT-6)

Posted 4/12/2016 12:03 PM (GMT 0)
No, no iodine loding test. To be honest, ive been afraid to due to to potential to make Hashimotos worse. I feel bad enough, I dont need symptoms to flare right now.
Posted 4/12/2016 12:46 PM (GMT 0)
Actually, with you taking Acella desiccated thyroid, your numbers don't indicate that your thyroid is working well.

People taking optimal doses of desiccated thyroid (or any form of T3) will have suppressed (below-range) TSH. Again, we don't use TSH for dosing purposes but it can *some*times provide an inclination of thyroid status.

I take synthetic T3 & T4 and, on a "good" day, my TSH is .007.

Do you actually feel well taking 60mg every third day? That's quite the difference in amount of hormone you're getting that day.

Yes, many of us alternate doses but, the difference between the dose sizes is much smaller than taking a double dose every 3 days....and it's only T4 that should ever be taken in alternating dose sizes because T4 has a 7-day half-life vs. T3 with a one-day half-life.

The body maintains homeostasis much easier if it's receiving close to the same amount of thyroid hormone each day. After all, thyroid hormone is the gas in our tank.

Perhaps you might consider 45mg every day for a few weeks, get labs and then evaluate your possible need for T4...

Iodine isn't recommended for anyone dealing with autoimmune thyroid disease.
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