LYME DISEASE. What to do? : Hi, this thyroid... - Thyroid UK

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LYME DISEASE. What to do?

xanderusa profile image
26 Replies

Hi, this thyroid protocols are going to get me crazy. I not only turned out having Hashis, adrenal problems, but also Pituitary problems. And the last strow my lyme D gave reactive in the lab. What can I do? Are the L.D having my low T4, or high antibodies?

Labs Collected: 05/03/2016 09:34 =

*THYROGLOBULIN ANTIBODIES: 26 high range: < or = 1 IU/mL

*THYROID PEROXIDASE ANTIBODIES: 36 High. range: <9 (IU/mL)

*LYME AB SCREEN: 1.01 High Index Interpretation:< or = 0.90 Negative 0.91-1.09 Equivocal > or = 1.10 Positive

* LYME DISEASE ANTIBODIES (IGG,IGM), IMMUNOBLOT:

LYME DISEASE AB(IGG),BLOT:NEGATIVE

18 KD (IGG) BAND: NON-REACTIVE

23 KD (IGG) BAND: NON-REACTIVE

28 KD (IGG) BAND: NON-REACTIVE

30 KD (IGG) BAND: NON-REACTIVE

39 KD (IGG) BAND: NON-REACTIVE

41 KD (IGG) BAND: REACTIVE

45 KD (IGG) BAND: NON-REACTIVE

58 KD (IGG) BAND: NON-REACTIVE

66 KD (IGG) BAND: NON-REACTIVE

93 KD (IGG) BAND: NON-REACTIVE

LYME DISEASE AB(IGM),BLOT:NEGATIVE

23 KD (IGM) BAND: NON-REACTIVE

39 KD (IGM) BAND: NON-REACTIVE

41 KD (IGM) BAND: REACTIVE

By the way, I tested negative on Gluten and celiac sensitivity according to my lab tests. I thought my antibodies were high because of them, but they aren't so I think at least it's good news on this one since I HATE the Paleo diet. Dr. even tested me for Chlamidia lol.

*(celiac disease) TISSUE TRANSGLUTAMINASE AB, IGG: 2  <6 (U/mL) Value Interpretation <6 U/mL: No Antibody Detected   >or=6 U/mL: Antibody Detected

*(celiac disease) TISSUE TRANSGLUTAMINASE AB, IGA: 1 <4 (U/mL) Value Interpretation <4 U/mL: No Antibody Detected

                                   >or=4 U/mL: Antibody Detected

*(gluten) ENDOMYSIAL ANTIBODY SCR (IGA) W/REFL TO TITER: Negative

*(gluten)RETICULIN IGG SCREEN:Negative

*(gluten) RETICULIN IGA SCREEN: Negative

*CHLAMYDIA TRACHOMATIS AB (IGA,IGG,IGM):Antibody Not Detected

Reference Range:

C. TRACHOMATIS IGG:<1:64 Antibody not detected IgG <1:64

C, TRACHOMATIS IGA:<1:16 Antibody not detected IgA <1:16

C. TRACHOMATIS IGM:<1:10 Antibody not detected IgM <1:10

I

am also attaching my latter labs which showed Pituitary issues. I

already did the MRI. Labs Collected: 03/29/2016 09:31 (took thyroid-s 2

grains am/pm; T3 12.5 am and 12.5 pm the day before)

FT4 0.8 range: 0.8-1.8 ng/dL

FT3 4.1 range: 2.3-4.2 pg/mL

CORTISOL, TOTAL = 8.9 mcg/dL (blood test)

Reference Range: For 8 a.m.(7-9 a.m.) Specimen: 4.0-22.0

Reference Range: For 4 p.m.(3-5 p.m.) Specimen: 3.0-17.0

FSH = 2.6 1.6-8.0 (mIU/mL)

LH = 4.0 1.5-9.3 (mIU/mL)

PROLACTIN = 4.9 2.0-18.0 (ng/mL)

TESTOSTERONE, TOTAL, MALES (ADULT), IA= 252 250-827 (ng/dL) (in range but still low)

SYMPTOMS:

SYMPTOMS:

*Unrest legs syndrome or something similar during the night or when standing up.

*I have some way of burning in my back during the day which is strange since I only have high cortisol at nights. And since I also have gastritis it kind of irradiate to my back too.

*When I close my eyes hard I feel like if they were heavy or swollen but they are not. Strange. Myxedema?

*Temps in the morning are 98.7 in average and normal during the day.

* Unable to lose weight.

*My levels of energy has improved slightly, still tired after 3. I just want to sleep a bit.

*My joints are improving VERY slightly while MMS protocol, but still on it. Let's see after the 3rd week.

*Neck stiffness.

VIT & MEDICINE:

T 3 (12.5mg) + Thyroid 180 mg, Licorice root, Selenium 200mg, Zinc & Copper, Magnesium (only half since it causes me diarrhea and some days only), B-12 Methyl, B Complex, B-12 Hydroxo, D3, Turmeric, Vit C, Sea Salt, cinnamon.

Adrenal Cortex 10 capsules of 50mg during the day. mg .

Do you guys think the LYME is the culprit of my high antibodies? And more than

that, of everything including the Pituitary, adrenals, thyroid? I read

that yes. I already did the Banterol and Samento protocol but it seemed

didn't work on me since I tested reactive on LYME. I was wondering if

the famous MMS protocol will work.I read that it's working. I have one week on MMS and not feeling any significative change, except for my joints are starting to pain less.

Thank you for your support. Blessings.

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xanderusa profile image
xanderusa
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26 Replies
radd profile image
radd

Xanderusa, 

Well at least you are getting some confirmed diagnosis' now, although I am really sorry to hear about the Lyme. There is no way of telling which came first or what exactly drives your high antibodies but one disease would certainly perpetuate the other.

Re pituitary dysfunction - TSH isn't used for med dosing and your T3 levels are good. T4 is often low when medicating NDT and you are dosing additional T3. Ensure T3 doesn't go over range. Together with NDT, are you dosing 12.5mcg T3 once or twice a day ? ? ..

Re celiac disease // gluten intolerence - in many people blood tests may only detect antibodies in a relatively advanced stage of the disease so not reliable. Even biopsies can be inconclusive. Stool analysis is slightly more sensitive as it detects antibodies produced in the digestive tract (more concentrated as haven't yet escaped into the blood stream.).

There is a cheek swab genetic test for people with HLA DQ 1, 2 or 3 genes who will be more predispositioned to have autoimmune disease, celiac or gluten intolerence but isn't it just easier to eat a gluten free diet ! ! ..  There is much research confirming that antibodies may be reduced with a g/f diet and you have high thyroid antibodies. You don't have to eat a Paleo diet, just g/f with protein, low GI carbs & healthy fats at every meal. Think of your food as an extension of your meds as it can be very healing if you eat a diet suited to your body. 

I don't know a lot about MMS but the little I do know, I don't like. I don't know anything about Lyme Disease or the treatments but hopefully others will respond. 

Re gastritis - if MMS hasn't caused the inflammation ! ! .. , low thyroid hormone can by encouraging low gastric acid. Are you supplementing Betaine HCL with pepsin for low stomach acid ? 

Good sups but again, no mention of folate ! ! .. Vit B12 & folate should be supplemented together with a good Vit B complex. Also no EFA's ? ( reduces inflammation) or probiotics ? ? .. 

Gut health is massive in mediating both TH-1 & TH-2 ( I don't know what Lyme does to the immune system but it has to be bad. ) I have read research on probiotic strains influencing cytokines to help direct T cells towards either a TH-1//TH-2 dominant immune response. I have also read of the gut making its own folate with the right bacteria. .. amazing ! ! .. 

Adrenals love Vit C. My compromised adrenals were intolerant to glandulars but after benefiting from a years worth of 3g daily doses I can now introduce Dr Wilsons Adrenal Rebuilder (mixed).

If turmeric doesn't work for you try Cucurmin which I have had great success with in reducing inflammation & thyroid antibodies & now continue on a maintainence dose. There are differing schools of thought regarding Cucurmin or the whole turmeric.

I have Hashi and at my worst felt my eye balls were swollen too. It was eventually alleviated with optimal thyroid hormones. Don't forget how long thyroid meds can take to work. Yes, T3 has a short half life so quick improvements may be seen but a year on T3 and good biochemistry, and I am still seeing improvements. 

I think it depends on how long we remained undiagnoised, nutrient//iron deficiencies, other health issues and the state of the poor adrenals. A journey to wellness can be a long one and necessitate the unravelling of cycles of inflammation and restoring immune balance but you appear to show slight improvement. 

I wish you well.

Allyson1 profile image
Allyson1 in reply toradd

I had not heard of a stool test for celiac antibodies?

radd profile image
radd in reply toAllyson1

Allyson, 

It is not conclusive but both gluten intolerance and Celiac disease usually make antibodies against gliadin that can be tested in stools. 

These results can be used to determine if further investigation is needed in t-Transglutaminase & Secretory IgA//IgG, etc, etc.... Unfortunately some are born with a IgA deficiency so don't make these antibodies anyway. 

Most people who test positive for a gluten intolerance test don’t have Celiac disease but those who do have a difficult time getting it diagnosed as even the intestinal biopsy, the so-called gold standard of diagnosing celiac disease gives false results. 

The medical profession just calls any gut issue "IBS" ....and so terrible malabsorption issues ensue.! ! ..

Allyson1 profile image
Allyson1 in reply toradd

Thanks!

xanderusa profile image
xanderusa in reply toradd

Thank you Radd. Pretty informative. I have two questions in regarding GLUTEN

1. Even if someone test negative with all pertinent profound Labs that is NOT Gluten sensitive or Celiac, the gluten will STILL raise antibodies no matter what?

I suspect I don't have Gluten sensitivity (confirmed slightly for the labs), since I am on Paleo since almost 1 years and the antibodies didn't move ANY comma. 

2. If it is not the gluten raising antibodies, what others causes could be the culprit?

3. In regarding your T3 question:

I am dosing only 12.5 mg since 3 grains of NDT already contains 13 mg so, 13 x 3 + 12.5= 51.5 mg of T3 so I think that's enough considering the body produces naturally only a bit of T3, so I am trying to recreate this on NDT even though exaggeratedly since 51.5 mg to me is excessive.

 

loglegmomma profile image
loglegmomma in reply toxanderusa

My T3 was slightly low before I treated my Borrelia infection.  I didn't want to take meds because I was already dealing with tachycardia & my pharmacist said it could exacerbate that so I shouldn't take it unless it dropped further.

I looked into it & Chris Kresser has written many articles about how T3 is more affected by your adrenals.  Also, very low carb diets will affect your T3.  At the time, I was Paleo with very little carb.

Also, Lyme can deplete your D & magnesium which contributes to much of the pain.

sulamaye profile image
sulamaye in reply toxanderusa

Were you on paleo when celiac test carried out? I'm sure you know that you have to be eating gluten 8 weeks prior to test? 

loglegmomma profile image
loglegmomma in reply tosulamaye

I didn't know ghat.

sulamaye profile image
sulamaye in reply tologlegmomma

Yes sorry, it's a pain but the reactive marker won't necessarily be there if no gluten in the system. GPs are as ignorant as ever.

radd profile image
radd in reply toxanderusa

xanderusa,

Dr. Datis Kharrazian states ...[.. just no question that many people that have Hashimoto’s and hypothyroidism have gluten-sensitivity...]..

and

... ..[.. milk, wheat, eggs, peanuts, fish, crustacean, tree nuts, and soy beans, are thought to account for more than 90% of all IgE-mediated food allergies in the USA ...] ...

There are also foods that can act like gluten called cross reactors. When your body creates antibodies against gluten, those same antibodies notice antibodies in other foods so when consumed your body treats them as gluten..

I had the Cyrex Laboratories Gluten Associated Cross Reactive Foods test and was "out of range" with amaranth (gluten free) and "equivocal" with rye, barley, spelt, polish wheat and hemp (gluten free). There’s probably other proteins even within the Paleo diet that can directly cross-react so causing raised thyroid antibodies. Grain-free seems to be the best model advocated by DK but difficult to totally adhere to.

I am not a natural protein eater but have found increasing my intake of both kinds has helped balance thyroid hormones as helps with transporting thyroid hormone to all tissues, & levels blood sugars. Unbalanced blood sugar levels release interleukin-6 to activate the hypothalamic- pituitary- adrenal axis but this activates TH17 cells, which then promotes autoimmunity.. I read TH17 is big in mediating TH-1 & TH-2 and lots of further research is being done in relation to autoimmune disease and imbalances between T-help cells (TH-17) and Treg cells. NEVER miss a meal or eat unhealthily. I add pea protein to my smoothies and keep an emergency Pulsin' Protein Bar in my car.

Once antibodies are raised the body's immune responses are heightened and may become sensitive to any stresses or environmental triggers. A lower antibody count will bring better tolerance of everything. Constantly elevated antibodies brings on such inflammation that the body becomes stuck in a chronic state of immune system overload, adrenal insufficiency, gut dysbiosis, impaired digestion and eventually thyroid hormone release//synthesis abnormalities.

I don't know anything about Lyme disease but would suspect it is playing a huge part in your problems. Gut health is a massive part of the immune system and must be supported with Ox bile, Betaine HCL, digestive enzymes and probiotics where needed. Any gut issues such as IBS, candida, etc must be addressed.

Vitamin D plays an important role in immunity in balancing the TH-1 &TH-2 by influencing T-regulatory (TH-3) cells. Ensure your Vit D is optimal by testing as many Hashi sufferers have genetic mutations resulting in abnormal vitamin D receptors which requires higher doses of vitamin D for effective results.

I have had all my amalgam removed last year in an effort to reduce my thyroid antibodies. There is much research showing lymphocyte responses becoming normalised after mercury removal.

I think your T3 a little high. Adding T3 should help the T4 in NDT convert additional T3. As you regain a little adrenal health, etc encouraging thyroid hormones to work better, you may find you need to reduce the T3 dose.

.

Cross-Reactivity

hashimotoshealing.com/other...

.

Wheat//milk proteins & Neuroimmune Reactivities

mdpi.com/2072-6643/6/1/15/htm

.

TH-17 in Hashimotos

ncbi.nlm.nih.gov/pubmed/200...

.

Vit D regulates TH-3 (TH-1 & TH-2)

chriskresser.com/the-role-o...

.

Mercury & Hashimotos

ncbi.nlm.nih.gov/pubmed/205...

radd profile image
radd in reply toxanderusa

xanderusa,

What about folate ? ? ? ...

loglegmomma profile image
loglegmomma

Lyme & other Tick-borne illness will mess you up!!!!!!

What's MMS protocol?

xanderusa profile image
xanderusa in reply tologlegmomma

Hi. You won't believe what MMS will make for you

youtu.be/7ptuJDbnlTk

posthinking01 profile image
posthinking01

Hi there - yes I am in touch with a Lyme Disease charity in the UK and it would seem that the bacteria relevant in Lyme disease - hits the thyroid - most of the symptoms suffered would appear to be low thyroid.  Apparently it is triggering Hashi's.

Bluedragon profile image
Bluedragon

Hi, I know little of Lyme and its protocols so I can't help there. Magnesium- which ones are you taking? There are a number of types, some to be avoided. Off top of my head- malate, glycinate, taurine are good. Citrate good for sleep - look at Natural Calm- take to bowel tolerance.  Epsom salt baths - can get a huge bag on Amazon. Skin sprays are well liked. 

With your D3 - are you taking K2?

Josiesmum profile image
Josiesmum

I've read very worrying stuff about MMS, for example:

justice.gov/opa/pr/seller-m...

courthousenews.com/2016/05/...

xanderusa profile image
xanderusa in reply toJosiesmum

I was too, but after realizing this is a "big pharma conspiracy" I  was fresh. I went further more on investigating this since it's impossible that thousand of ppl have been cured from this and putting their testimonies out there. Moreover, there are NO evidence of ppl getting sick from this. Vomit, headaches are natural herx reactions indicating they are being healed.

Pooh10 profile image
Pooh10

There's a great Facebook forum re Lyme LDUK

sulamaye profile image
sulamaye

Who carried out your lymes tests and how much did it cost you? I've been ill 5 years and have had NHS test for lymes but still concerned.

loglegmomma profile image
loglegmomma in reply tosulamaye

After 1 positive band from Quest, I used Igenex, which cost about $1,300.

Based on two positive & 2 indeterminate bands from Igenex, many doctors said it was not positive for Lyme because CDC standard is 5 reactive bands. I was referred to a doctor who tested a specific titer for a different Borrelia infection based on the type of ticks in northern CA. Bingo! Borrelia Hermsii-- Tick Borne Relapsing Fever, Lymes ugly sister.

sulamaye profile image
sulamaye in reply tologlegmomma

Thanks wow expensive.

loglegmomma profile image
loglegmomma in reply tosulamaye

Yes... and the Infectious Disease doctor at my hospital said he doesn't accept their results, so I had to go to another doctor who fortunately used the results as a starting point to look for a more specific disease.

Pooh10 profile image
Pooh10 in reply tosulamaye

Sulamaye I used Armin labs based in Germany. Many people have used them. I was v happy with them

linlow profile image
linlow

Undoubtedly publichealthalert.org/the-l...

You need to be looking at one of the autoimmune diets, there are people curing themselves mindbodygreen.com/0-7005/ho...

I'm not suggesting the you do a paleo diet (science is actually suggesting that vegan is the best autoimmune diet) but this page has a number of good support suggestions phoenixhelix.com/2014/01/26...

loglegmomma profile image
loglegmomma

I took Doxycycline for 6 weeks & ate a very clean diet, with extremely limited sugar & processed foods.

The doctor wanted to do daily ceftriaxone IV, but I have poor veins and his office is 30-45 minutes away so I wanted to try pills to cause the least disruption to my work.

I've had 2 negative titers, so it seems to have worked.

loglegmomma profile image
loglegmomma

Yes I'm in the US. It's very tricky to get diagnosed and many doctors don't understand how to treat it. I was blessed to find a doctor whose daughter had it so he understand.

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