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Cause of Hashimoto's: Lyme Disease... Info/Advice needed!
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Cause of Hashimoto's: Lyme Disease... Info/Advice needed!

I think my holistic doctor and I may have found the cause of my Hashimoto's by accident last week.  In preparation for my appt. with a doctor that I found who was willing to prescribe me Armour/Naturethroid, I went through a packet of bloodwork that my PCP had handed to me to give to a new endo (he was unable to fax them, so he gave them to me to pass along).  I had never seen the bloodwork before.  I had only been given the gist of the results (positive or negative) via emails from my PCP.  During the early period of all of my symptoms (lymph flare ups, numbness/tingling, muscle weakness, impaired thought processes/brain fog, hives, joint pain, dry skin/nails, etc...) my doctor suspected Lyme's disease (prevalent in my area [Maryland]) and ran blood work.  He did a western blot test and told me that I tested negative for the disease.  Symptoms worsened and peaked once a month for the next several months before I was finally diagnosed with Hashimoto's by a rheumatologist.  Endo, after endo, I was told that while I had Hashimoto's (elevated TPO and Tgab) most of my symptoms seemed unrelated to the thyroid itself and my levels were much too "perfect" to be treated with thyroid medication.  Frustrated, I sought help from a holistic doctor to give me Naturethroid to help relieve my symptoms.  Anyway, in reviewing my bloodwork to prepare for this appt. I noticed that the Western Blot was negative, but not entirely negative.  CDC requires 2/3 lyme antibodies to be present in order to test positive for lyme.  I had one: IgM P23 ab- positive/abnormal.  After much research, this is a false negative for Lyme.  IgM P23 ab is a Lyme specific (Bb) antibody and only prevalent in a person with Lyme disease.  There is no other reason a person would have this antibody other than contracting Lyme.  In fact, I remember vividly removing a deer tick from my leg and saving it in a zip lock bag to be tested if I ever got the trademark bullseye rash, which I did not, so I nor the tick were ever tested.  This was 9 years ago and my symptoms have progressively gotten much worse... debilitating since the birth of my daughter a year ago.  This birth, where I hemorrhaged severely, apparently caused stress on my immune system and the Lyme to go awry in my system.  And guess what????  Untreated Lyme's disease has been know to cause Hashimoto's!!!  Not only did it take me FOREVER to get misdiagnosed with Hashimoto's, I have now gone I don't know how long with undiagnosed Lyme's disease and more than likely passed it along to my children inutero.  I have started a treatment of antibiotics (doxy) for the Lyme, however if it is chronic undiagnosed (and I'm guessing it is), I will need to find a doctor willing to give me long term IV abx in order to treat it properly.

Has anyone else experienced a diagnosis of Hashimoto's and Lyme???  I would love to hear advice and encouragement!!!  (Sorry if this post is lengthy and poorly written.  My "brain fog" is the worst it's ever been today!!!)
13 Comments Post a Comment
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1756321_tn?1377771734
Glad you finally found the problem!  Misdiagnosis of Lyme disease is very prevalent. There is a documentary called Under Our Skin about the misdiagnosis of Lyme.
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4939681_tn?1361302899
Thanks!  It feels good to know, however proper treatment of Lyme is even harder to obtain than Hashimoto's, believe it or not.  It is CRAZY!!!  Just like I had to find a holistic doctor who charged me $450, out of pocket, to grant me a prescription for Naturethroid, I now have to get a LLMD (lyme literate md) to treat me for Lyme and they also don't take insurance due to legalities.  They quoted me another $450.  Must be the magic #.  

Anyone with Lyme and Hashi:  I haven't taken the Naturethroid, yet.  I'm hesitant as I just can't take my symptoms getting any worse and my thyroid levels are currently looking good.  However, my husband is fussing at me to take it, telling me it's worth a shot to see if it helps.  Any of you notice improvement with Naturethroid/Armour????
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798555_tn?1292791151
If anyone else is wondering about lyme and its symtom similarities to hypo thyroid, this is how you find a lyme literate Dr. These people get in touch with you. Because of leagle issues there are no lyme Drs listed on any one site, they keep their distance and dont advertise.

http://www.chroniclymedisease.com/llmd-referrals

there are other sites / groups that can help. Many Lyme states have supports groups and lyme patient associations that can help you find lyme Drs. This is how it works in Minnesota, probably the same out east too.

I never heard of lyme causing Hashimoto (with elevated thyroid antibodies
) , but since lyme can stress so many organs, I suppose it could possibly cause non-autoimmune hypothyroid, who knows......

Have a good link on Lyme causing Hashimoto elevated antibodies? - I'd like to read this.
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1756321_tn?1377771734
There are websites talking about a connection between Hashimoto's and Lyme but no definite link that i have found. I've never read anyone lose a severe amount of weight due to Lyme either.  
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4939681_tn?1361302899
There are so many threads of people who have Hashimoto's and diagnosed with Lyme or Lyme and then diagnosed with Hashimoto's, but you're right... not a lot of research delving into the relation of the two.  Then again, there isn't a lot of substantial research delving into much of anything Hashimoto related, so I'd expect nothing more:(  The most relevant pages that I printed out were:

http://www.*************************/lyme-disease/

http://www.centuryinter.net/tjs11/bug/l14.htm

http://drhedberg.com/2011/02/10/autoimmune-thyroid/

The one from "Stop the Thyroid Madness" has dozens of actual research links and names of books relating the Lyme infection to autoimmune antibodies.  It is a great read!

I also saw research indicating a food born bacteria called "yersinia enterocolitica" and other bacterial infections such as rickketsia to be known to induce thyroid antibodies.  

I don't know... maybe it's all a racket, but traditional doctors aren't offering me any answers nor treatment as my health continues to deteriorate, so I'm throwing myself into the guinea pig ring.  I give up, I suppose.

I have set up an appt. with a LLMD (lyme literate md) in my area 4 wks from now.  At this point, I've lost my health and I'm losing my dignity desperately grasping to hold onto what's left, so all I have to loose is a hefty chunk of change.  Honestly, if the benefit is getting at least 25% of my old self back, it will be worth it.  I'm only 34 and have 4 young children to love and enjoy.  I have a lot to look forward to and don't want to miss a second more of it.

As far as the weight loss goes, it's weird, right???  I mean, Hashimoto's = weight gain and Lyme = weight gain.  Rarely do either cause weight loss.  I can't figure that one out, either.  (i.e. my stupid "lymphoma" paranoia)  I was underweight before my pregnancy, as well.  During pregnancy I gained roughly 50 lbs., no problem, but as soon as I gave birth the weight flew off with no diet and exercise change.  Honestly, I'm the worst when it comes to proper diet and exercise (the latter mainly due to muscle weakness, fatigue and low blood pressure issues, not by choice).
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4939681_tn?1361302899
Ugh!  the best link didn't post.  i wonder if there is a block linking to the website or something.  anyway it's "stopthethyroidmadness/lyme-disease/"
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798555_tn?1292791151
Since I live in "Lyme country" and do a lot of outdoors stuff, I was testesd several times for lyme by regular MD's, was negative. But-they arent up to par with lyme disease, that was obvious. My lymph nodes never swelled either, I think they do will all lyme infections.

I first had Hashimoto symptoms decades ago , early teens. I had unusual muscle pain for decades which they thought could be from Hashi or Lyme. Synthroid, regardless of the level, did zero for my symptoms. Started dessicated about 4 yrs ago and it helped a lot with pain, mental clarity and sleep.. Since improving on dessicated, Drs threw lyme out the window so to speak, even though I never saw a lyme literate Dr.

I know two people with lyme and they took antibiotics for about 4 years!

At my worst time with Hashimoto, I was in a lot of pain and lost some weight that I didnt need or want to lose.

Oh, you automatically cant post thyroid sites here, as they are competing with adds ect.
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1756321_tn?1377771734
I was suspended for 5 days without notice for mentioning a certain thyroid website **** yes that one. I feel the love. :) The excessive weight loss threw me off the Lyme Diagnosis for sure.
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4939681_tn?1361302899
My PCP is currently out of town, so I saw one of her colleagues today.  He started to listen to me and began typing my symptoms.  About 20 symptoms in, he stopped and looked at me and said, "Why are you here today?"  I said, "For everything!"  I need help!  He said that there wasn't anything he was going to do for me during a 30 minute appt.  I told him that's what every doctor I've ever seen has told me, so what am I supposed to do... where am I supposed to go???  If you can't help me and they can't help me (pointing to my giant binder full of specialist, bloodwork results, and radiology reports that I lug with me everywhere), who is supposed to help me???  He carefully looked through all of my papers and said what most doctors have said, "It's quite plausible that it is just your thyroid and most likely your parathyroid, too."  I, said, yes that is under investigation.  I am waiting for another thyroid scan at the end of April (I've had so many scans that we had to postpone the test because of my radiation exposure over the past year, which I'm sure is only adding to my problems.)  There was a tumor found, but it was smaller than a grain of rice, so I, like my endo's, am not convinced that that is the primary suspect for my increasingly horrible symptoms.  I showed him my Lyme results and told him how the holistic doctor put me on doxy because he, like me, believed that to be a main culprit.  I admitted that the holistic doctor thing was last minute and that I had already had this appt with my PCP set up and couldn't see cancelling it due to how bad I felt.  He said that yes, the Lyme does sound very plausible and that he would have just put me on doxy as well.  He said, the most I can offer you is a "some advice on healing with a better diet, advice to continue the doxy, pray that it works, and a hug."  "You are going to have to let go and let God.", he said.  I get it!  I do!  And I really appreciated his sincerity, as he genuinely did seem concerned for me and not at all dismissive like many others.  However, I will pray... I have and will continue to... but to let go and let God... I just can't... I am too much of a fighter.  If I'm going down, I'm going down kicking and screaming all the way!
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798555_tn?1292791151
I had a huge list of hypothyroid symptoms, kept getting worse evey year. They didnt get any better till I took charge of my health and sought Drs that would do what I wanted. Many people have a similar story. Fact is, for many people, optimal health is now managed from ones self, not a Dr. .....Sad but true. Open minded Drs are the best ones.
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Avatar_f_tn
There is hope!! I have been caring for my daughter, who was diagnosed when she was 16, with Lyme disease by Sierra Integrative in Nevada. (I'm not even going to list all the years of going to doctors, etc., that mis-diagnosed).It was VERY expensive & painful to treat. She gave up on the treatments after getting relatively better. At 23, she had treatments from a Lyme "specialist" doctor, here in CA. The antibiotics left her in horrible, crawling on the floor pain. That was in October of 2011, she had to quit her job & move in with us. I scoured the internet for a month & came up with Boluoke Lumbrokinaise, Biofilum seaweed, Garlic 6000, Sivercillan, a good probiotic, (I'm using Synergy by Designs by Health), Heel Detox & the Byron White Products. She's back home again because she's 25 & lives the party life, that's totally incompatible with Lyme. We are ready to start treatment again. Diet for 8 weeks: vegetables & meat, homemade soup, protein drink (jay robb, egg white), stevia, honey. No fruit, dairy, grains, potatoes, corn, sugar, etc.
   I am going to use Pekana instead of Heel this time: It's stronger.
Afterwards, I will try to get her to stay on the Blood Type diet We're all type "O", so it's not too hard.
  She went from a pain level of "!0" to a "5" in 3 weeks last time she was here. The Byron White Formulas are amazing. Do your research, check out their websites, read the reviews & blogs & you WILL get success!
chatteycathi
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4939681_tn?1361302899
The problem is that there are sooooo many different protocol combos to fighting Lyme that I couldn't go into it blindly.  I ended up going to an LLMD and had the Igenex recommended testing.  I also, just had a lymphectomy that is undergoing an extensive biopsy.  The LLMD charged me $1570 for 2 hr. appt + additional $600 for blood tests!  Insane!  And I'm still just on the same low dose of doxycycline that I was before I went.  Ugg!  I wish I was brave enough to come up with a good protocol like you did for your daughter.  Your daughter is very lucky to have you helping her.  I did just start Burbur, which I understand may have the same effect as Bolouke?  The diet thing is going to be the hardest, but I hear that a good gluten free + organic diet is pretty much the key to any ailment!  Best wishes to you and your daughter!
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Avatar_f_tn
YES. Started doxycycline treatment, and broke out in a rash on the spots that were trouble.  Lower back and thyroid had rash and acne for about a month. Thyroid antibodies 959, although tsh not too far off. I take 12.5 micrograms levothyroxine, 2.5 mg hydrocortisol, and b-12 shots for the pernicious anemia.  Also, krill oil and cats claw are great for inflammation.  Also, glutathione IV's for brain fog. My doctor is here in Prescott AZ.  He created a Lyme recovery tincture, and his name is Robert Myers.
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