is it ok to take a break from the mino for a while?

[lyndsaylee]

I have been on it for years. I don’t have a doctor that supports me in this – just one that is willing to prescribe the medicine – so I’ve been on my own and I’m sure not doing it “right.” Little by little I’ve been getting sicker and sicker but I’ve been too busy and exhausted trying to survive to do anything about it. But now things have gotten quite bad and there is no ignoring it. In addition to the psoriasis and psoriatic arthritis I have hyperthyroidism, osteoporosis, torn rotator cuff (caused by what?) ddd, and djd. I’m in a lot of pain and it’s difficult to get enough sleep. I’ve made a hash of things (I’m speaking of my health) but I don’t have the energy or desire to try to explain how or why I got this place I am now. I just want to get well. But where to start? And how do I reverse years worth of damage? So I’ve taken the week off work and I spent my first two vacation hours studying the importance gut health is and the role good bacteria plays in our health. (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3384703/) I am sure this many years of eating antibiotics and anti-inflammatories without due diligence to taking care of my gut has not been good and possibly at some point precipitated further decline.

I realize one week off work is not enough time to learn all about gut health and all its implications (such as how poor gut health causes inflammation – http://www.healthy-eating-politics.com/autoimmune-diseases.html) but it’s a start. I thought maybe the first step would be to go off antibiotics for a while and work on mending my gut. Is there any reason why doing this would be a bad idea? What about anti inflammatories? (I figured i’d have to stay on them right now since my psoriatic arthritis is active.)

[Maz]

Hi Lindsay,

@lyndsaylee wrote:

I have been on it for years. I don’t have a doctor that supports me in this – just one that is willing to prescribe the medicine – so I’ve been on my own and I’m sure not doing it “right.”

I think my best suggestion would be to make a trip to Lufkin to see Dr. K. who will be able to get you back on track with diet, supps, healing your gut and also managing your AP. 😉 I think this will take a lot of the stress out of your fight, Lindsay, as it sure helps to talk with a doc who knows what they’re doing and can relieve some of the burden…but, of course, you will still have to make the lifestyle changes and self-advocate in this respect.

Little by little I’ve been getting sicker and sicker but I’ve been too busy and exhausted trying to survive to do anything about it.

Unfortunately, you’re probably not alone and many people neglect their health until it gets to crisis point. However, give yourself a pat on the back, because you’ve woken up to this and have started figuring out what steps to take next. Sounds like you’re on the right track to me.

But now things have gotten quite bad and there is no ignoring it. In addition to the psoriasis and psoriatic arthritis I have hyperthyroidism, osteoporosis, torn rotator cuff (caused by what?) ddd, and djd. I’m in a lot of pain and it’s difficult to get enough sleep.

I’m confused – your signature line says you’re “hypothyroid,” but above you are saying you have “hyperthyroidism?” Can you share what type of thyroid disease you’ve been diagnosed with? If hyper, osteoporosis is a well-known outcome of that. It will also be making you feel exhausted, heat intolerant, anxious, sweaty, cause an inability to think clearly with broken sleep patterns, heart rhythm irregularities, gut disturbances….and a lot more! Getting this sorted out as a priority might also help relieve some gut issues, though you would also need to re-assess your diet, pain meds and abx protocol. This link is to a short video interview of a GI doc at MA General who speaks about how NSAIDs and gluten cause leaky gut. It’s always been thought to be a bit of a woo-woo thing to have gluten intolerance, but now the mainstream GI docs are coming right out and saying it:

http://www.msnbc.com/newsnation/watch/ibuprofen-may-contribute-to-celiac-disease-234049091796

There are many supps that can be taken to help heal the gut and I’m sure others here will chime in to let you know what they use, in addition to good quality probiotics, but diet is key to many health issues, including a number of thyroid diseases.

I’ve made a hash of things (I’m speaking of my health) but I don’t have the energy or desire to try to explain how or why I got this place I am now.

It’s okay – I think many of us here will “get it.” The thing is, you’ve realized it and, by empowering yourself through self-advocacy, you can start to turn around this rut you feel you’re in. 🙂

I just want to get well. But where to start?

Find a good endocrinologist – not one who just measures TSH and T4, but one who runs a full panel of thyroid hormones to include TSH, T3 & free T3, T4 and free T4, as well as RT4 and autoantibodies. Find out what is happening to your thyroid and how to deal with this as a priority, if you can. Here is a link explaining thyroid labs from an integrative perspective. While the thyroid is poorly functioning, it’s almost nigh impossible to get rheumatic disease under control by just throwing meds at it:

http://www.holtorfmed.com/thyroid-disorders/

And how do I reverse years worth of damage?

Depends on the kind of damage – joint damage is a done deal, but gut and thyroid health can largely be restored.

So I’ve taken the week off work and I spent my first two vacation hours studying the importance gut health is and the role good bacteria plays in our health. (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3384703/) I am sure this many years of eating antibiotics and anti-inflammatories without due diligence to taking care of my gut has not been good and possibly at some point precipitated further decline.

Yes, see video above for deets on why NSAIDs create a vicious cycle.

I realize one week off work is not enough time to learn all about gut health and all its implications (such as how poor gut health causes inflammation – http://www.healthy-eating-politics.com/autoimmune-diseases.html) but it’s a start. I thought maybe the first step would be to go off antibiotics for a while and work on mending my gut. Is there any reason why doing this would be a bad idea? What about anti inflammatories? (I figured i’d have to stay on them right now since my psoriatic arthritis is active.)

Yep, sounds like you’ve planned a very good start. If possible, too, I’d be looking for a GREAT thyroid doc and also making an appt with an experienced integrative AP doc. When things get to crisis point (and I can relate to the hyperthyroid mess), we need docs who can see the bigger picture and can advise on where to begin. Focus on diet is not an option for many with PsA, but a compulsory first step. Starches and nightshades seem to be particularly harmful to this subset of rheumatics, as the germs in the gut (K. pneumoniae or C. pneumoniae) feed off these substances, but also gluten, sugar, dairy and anything and everything processed. With hyperthyroidism, too, there may need to be special dietary considerations re: iodine.

[flower]

Hi 😉 lyndsaylee

I have Psa and psoriasis :geek:

I don’t have a doctor that supports me in this at moment 🙄

how long have you on minocycline? don’t work for arthritis? :geek:

ps. for psoriatic a. is very very important take high dose of vitamina D 3

searcing for Coimbra protocol

http://www.vitamindandms.org/researchers/coimbra/index.html

[lyndsaylee]

Maz and Flower, thanks for the replies. First, it’s hypothyroid. I typed my post in text edit first and it auto-corrected. Sorry. Funny thing is I have several of the symptoms you stated for hyperthyroid. The whole problem with seeing an endocrinologist is that I don’t have great insurance. In fact, it’s pretty much awful. I see who they tell me I’m going to see and all the doctors are in a university teaching hospital. That could be a good thing, but I’m sorry to say in my case it isn’t. Nevertheless I’ll ask. My primary doctor will sometimes test me for things at my request, so I’ll see if she’ll do this or give me a referral. I have definitely been thinking about seeing Dr. K. but I want to feel pretty sure about it before I do. I just wasted $100 on a chiropractor but that’s a whole other story I won’t go into. Will Dr. K advise if she thinks AP isn’t a good options for me right now or is her whole thing AP? I just read on a ps website that people with PsA shouldn’t wait to get help. The earlier the intervention the better the outcome. I remember my rheumy telling me the same thing when they first diagnosed me and wanted to put me on methotrexate. I refused and kept refusing over the years with all the different drugs they wanted me to try. I brought in literature and asked them to use me as a study to try AP and they said no and then threw me out of the Rheumatology clinic. They said I could get Etodolac and minocycline from my primary care doctor. Well, that’s water under the bridge now and will do me no good to beat myself up for it

[Maz]

Hi Lindsay,

Yes, Dr. K. can help with abx, diet, supps to help gut, etc. She accepts some insurances and, if patients drive from afar, there is low budget overnight accomadation they can tell you about near the clinic. I don’t know if she helps with hormones but she would prob also do any testing if asked. You can start a new thread with a subject header that says, “does anyone see Dr. k. In Lufkin, Tx,” and if any of her patients see your thread then am sure they’ll connect to tell you of their experience of her.

Some people do both commonly prescribed rheumatic drugs and AP, so it does not have to be either/or, but suggest you make the thyroid a priority if poss, because hypothyroidism will mimic joint and muscle pain experienced in rheumatic disease.

Do you need Dr. K.’s contact info?

[lyndsaylee]

No, I’ve got it – thanks. I’ve been on the fence about making the trip for some time now. I called Dr. K’s office a few weeks ago and they said they’ll be closed the week before and after the 4th, so I’ll have to wait just a few more days. Thanks, Maz for all your help and support. I will post another thread about peoples experiences with her.

[PhilC]

Hi,
@flower wrote:

ps. for psoriatic a. is very very important take high dose of vitamina D 3

searcing for Coimbra protocol

http://www.vitamindandms.org/researchers/coimbra/index.html

The problem with this advice is that vitamin D makes some people worse. I would use vitamin D with caution. For example, I started with only 200 I.U. per day, and slowly increased my dose over many months. When I reached a dose of of 2200 I.U., my teeth became very sensitive. After I reduced my dose of vitamin D to 1000 I.U. per day, the problem disappeared within a few days.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[lyndsaylee]

Well, that shouldn’t be a problem for me since I don’t have (real) teeth anymore 😆 (all joking aside, I don’t know what research says about it, but it’s my firm belief this disease robbed me of those, too.)

I have heard other warnings about taking Vit. D but I did start taking it when my bone density revealed I had osteoporosis. I would put a few drops in with my calcium, magnesium, boron and mk7 drink. Of late, I have started developing psoriasis on my legs which I’ve never had before. Could the Vit. D be suspect for that? Also, Phil, when you say Vit. D can cause problems, does that include Vit. D from the sun?

[PhilC]

Hi Lyndsay,
@lyndsaylee wrote:

Of late, I have started developing psoriasis on my legs which I’ve never had before. Could the Vit. D be suspect for that?

Honestly, I don’t know, but I doubt it.

@lyndsaylee wrote:

Also, Phil, when you say Vit. D can cause problems, does that include Vit. D from the sun?

Honestly, I don’t know. I’m sure there are people who would say that it doesn’t matter how you get the vitamin D, but my personal experience seems to indicate that it does matter. Years ago, oral vitamin D seemed to make my joint and muscle pain worse. Exposure to sunlight never did that.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[PhilC]

Hi Lyndsay,
@lyndsaylee wrote:

I’m in a lot of pain and it’s difficult to get enough sleep. I’ve made a hash of things (I’m speaking of my health) but I don’t have the energy or desire to try to explain how or why I got this place I am now. I just want to get well. But where to start?

I recommend that you start with your diet. In my experience, diet can be the critical factor that makes all the difference.

Have you read this message that I posted back in 2010?:
The “No Nightshades” Diet

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Author]

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