Tongue/Antibioitcs?

[Boris]

Hi Folks,
I was wondering if anyone had experience tongue issues when on AP? All of a sudden I developed a few bumps and folds on the side my tongue. I was on minocycline for 5 months and feeling fine but I stopped a couple of weeks ago when this had developed and now my tongue is somewhat clearing up. I read folds could be from nutritional deficiency either B12 or iron so I thought the anitbiotics might be playing a role in this somehow. No doubt I had ran to a couple of doctors however did not receive much feedback as to the issue only that weird things happen with autoimmune. I’ll be going to a couple of more doctors over the next couple of weeks. I’m taking B12 and that seems to be helping. I would like to get back on the antibiotics but would like to figure this one out first. I know I need to probably test for vitamin levels. Any similar experiences out there or thoughts?

[richie]

Are you swallowing the pill quickly –not leaving it in your mouth and drinking plenty of water when taking it –taking enough probiotic ?????????????????????—I hope you take this in a constructive manner –some bumps on the tongue is not sufficient reason to stop the antibiotic –its not a faucet to be turned on and off —One of the main reasons for my success was I just knew come hell or high water I was taking 200 mg of minocin daily –If another issue arose where I needed another med -the doctor and the pharmacist knew it had to be compatible with minocin -because under no circumstances would I stop the minocin -just not negotiable —I credit this focus with having a lot to do with my remission —I must confess while I still take 200 mg daily after 16 years I am a bit more lax now and do miss a capsule from time to time –but not very often –All the talk in the world wont do it –you got to believe that the antibiotic will get you better and give it priority –I see the pattern after being around here for 15-16 years –I can almost tell which people will respond to the antibiotic and who wont !!!!!!!!!!!!!!!!!!!!!!
richie

[Maz]

Hi Boris,

In addition to thinking it might be a nutrient deficiency, have you had your thyroid tested recently? Hypothyroidism can cause weird type of fluting along the sides of the tongue. Any white patches in your mouth?

Also, agree with Richie on stopping and starting the protocol, though sometimes brief breaks are needed (e.g. When a different type of abx is needed for an acute infection or when a hypersentive state occurs from too much herxing).

[Boris]

Hi Maz & Richie,

Thanks for your feedback. Yes please say anything that comes to mind I value your experience and opinion! So much that I just took a 100mg after reading your messages. I’ll stick with it until the tongue issue can be diagnosed. I do think I have a problem getting the probiotics straight. I was taking 2 separate doses of high quality to equal 130billion about 2-4 hours after the minocin. My blood tests say Centromere/ CREST. I initially started on 200mg MWF for the first few months and really had no issues…But I know the recommended dose for Scleroderma patents is 200mg a day. I switched to a 100mg a day and shortly after, developed this issue. 2 alternatives and rheumatologist said stick with what I was doing because I have seen good results, but maybe temporary.
Richie how long have you been in remission and if you are in remission why are you still following the AP? I don’t understand that.
Maz, its test after test after test! We are certainly being tested-:).

Have a wonderful day!!!

[Boris]

Maz, I in regards to the fluting I a do have that on the side of my tongue. But not sure about hypothyroidism.

[Airen]

@richie wrote:

Are you swallowing the pill quickly –not leaving it in your mouth and drinking plenty of water when taking it –taking enough probiotic ?????????????????????—I hope you take this in a constructive manner –some bumps on the tongue is not sufficient reason to stop the antibiotic –its not a faucet to be turned on and off —One of the main reasons for my success was I just knew come hell or high water I was taking 200 mg of minocin daily –If another issue arose where I needed another med -the doctor and the pharmacist knew it had to be compatible with minocin -because under no circumstances would I stop the minocin -just not negotiable —I credit this focus with having a lot to do with my remission —I must confess while I still take 200 mg daily after 16 years I am a bit more lax now and do miss a capsule from time to time –but not very often –All the talk in the world wont do it –you got to believe that the antibiotic will get you better and give it priority –I see the pattern after being around here for 15-16 years –I can almost tell which people will respond to the antibiotic and who wont !!!!!!!!!!!!!!!!!!!!!!
richie

Hi Richie,

Then can you tell me if it’s going to work for me?!? 😉

Diagnosed with RA in October 2014, pain started in February 2014
Started AP in June 2015
Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pm

[richie]

Hi My vibes are good –you have the focus !!!!!!!!!!!!!
Richie

[richie]

Hi Boris
I have been in remission since 2005 –got sick in 1998 -started with Dr T at Harvard in 1999 —I still continue the full dose because I have seen far far too many relapses when people discontinue the antibiotic -many people cut it back to a maintenance dose –Considering how sick I was- I personally see no point in cutting back the dose for me —Since the minocin is so benign I see no reason to even cut back –the only precaution I take is taking lots of probiotic daily —the only side effect is some discoloration on my ankles -I can sure live with that —
richie

[Maz]

@Boris wrote:

Maz, I in regards to the fluting I a do have that on the side of my tongue. But not sure about hypothyroidism.

Hi Boris,

I know how you feel. I’m sick of tests, too. However, if you haven’t had your thyroid checked, would be good to do that…full panel of labs to include TSH, T4, T3, Free T3 and Free T4, plus auto-antibodies and Reverse T3 (puts brakes on thyroid hormone conversion from T4, the storage hormone, to T3, the active thyroid hormone). Something like 70% of all autoimmune patients have co-existent thyroid disease (mostly women) and this affects pretty much all metabolic processes in the body. I have one of the strangest (and more rare) types of thyroid disease, called “toxic multinodular goiter.” It’s been horrible to get diagnosed, because I knew I had nodules – some hot and some cold on scans – but as all my labs were normal, though a little on the hyper side – no doc ever suggested it might be a problem. Turns out it has been a bigger problem than I could have imagined, because the cold nodule is now huge (benign), causing compressive symptoms on my esophagus, and the hot nodules produce intermittent hyperthyroid symptoms, making me swing between being hypo and hyper. Symptoms have been intolerable and overlap with my rheumatic symptoms (e.g. hypothyroidism can cause joint and muscle pain) and may well have been what has been slowing my progress all along. Surgeon says it needs to come out, because it’s toxic and it’s making me toxic, so I’m getting it removed next week. Wish me luck!

Anyway, suffice to say, even if labs look normal, there can be underlying thyroid disease that can make us very unwell and as rheumatic patients have a high prevalence of thyroid disease, it just makes sense to get labs drawn to check for function and overlapping autoimmune thyroid disease that can slow progress on AP.

Annoying, but true. 🙄

[Boris]

Hi Maz,
I’m sorry to hear that you’ve been dealing with this thyroid disease on top of everything else. I know for sure you will fair very well with your surgery next week as I can see you have the strength of the universe! One alternative doctor, (referred by roadback) had told me several months ago that once one has one autoimmune disease they are prone to acquire another one, especially thyroid. I don’t know why, but will ask him the next visit.
I will check out the thyroid for tests. Just tested more for lyme yesterday. You have excellent suggestions and information that you share with us. Thank you much.

[Boris]

Hi Richie,
I’m glad you’ve done well with minocin! You knocked some sense into me right away with your last reply. After your reply I’m back on the minocin right away. It has worked well for me over the last 5 months. I’m taking the same approach that you have, committed to minocin and deal with everything else as a separate issue.

[Maz]

@Boris wrote:

Hi Maz,
I’m sorry to hear that you’ve been dealing with this thyroid disease on top of everything else. I know for sure you will fair very well with your surgery next week as I can see you have the strength of the universe! One alternative doctor, (referred by roadback) had told me several months ago that once one has one autoimmune disease they are prone to acquire another one, especially thyroid. I don’t know why, but will ask him the next visit.
I will check out the thyroid for tests. Just tested more for lyme yesterday. You have excellent suggestions and information that you share with us. Thank you much.

The neuroendocrine system is intricately intertwined with rheumatic and other autoimmune diseases and I suspect that infections interfere with neuro-signaling from brain to spleen (where inflammatory cytokines, like TNF, are produced) and that critical endocrine glands are all interconnected to the vagus nerve. E.g. Thyroid lies directly adjacent to the laryngeal nerve and the laryngeal nerve branches directly off the vagus nerve. Little wonder that many people report periods of high stress, shock or some traumatic event, like surgery or an accident prior to the onset of their autoimmune disease….cortisol levels elevate, infections proliferate…and voila…neuroendocrine system becomes hyper-excited and the whole cycle of inflammation begins, creating attacks on various tissues in the body (including endocrines).

In case it helps, I’ve attached a couple of charts to help decipher thyroid labs. Sorry, the second one is very big and I’m not sure how to re-size it for this format. 😳

[Maz]

Hi Boris,

Saw this article and thought you might find it interesting to read – What your tongue tells you about your thyroid:

http://hypothyroidmom.com/what-your-tongue-tells-you-about-your-thyroid/

[Boris]

Hello Maz!
This is an excellent article! I have a couple of the issues the article describes. You’ve saved me the time in that I will go straight to an endocrinologist. The buzz is leaky gut and or full of toxins if its not bacteria, viruses, or lyme. At least we have the suspects! Be well, take care , wishing you the best with your surgery this week.

[Maz]

@Boris wrote:

Hello Maz!
This is an excellent article! I have a couple of the issues the article describes. You’ve saved me the time in that I will go straight to an endocrinologist. The buzz is leaky gut and or full of toxins if its not bacteria, viruses, or lyme. At least we have the suspects! Be well, take care , wishing you the best with your surgery this week.

So glad the article might help and thanks so much for your kind thoughts for me on Wednesday! Good luck to you, too, Boris, and hope the thyroid screening is a non-issue for you.

[Author]

Posts