Diarrhea and RA? or something more?

[DiamondTNT]

I love being able to come here and read all about others going through what I am!  It really helps get rid of the “why me”, “I'm all alone with this”, “is what's happening to me now part of my RA or something else?”, etc, etc, etc.

My symptoms have been increasing more this past week.  Additionally, I feel like a sinus and/or throat infection is trying to take up residence in me.  After reading here, I decided not to take my weekly Enbrel shot this past Friday, after contacting my Dr about it.  Great Enbrel discussions here lately that have really helped me.  I want to get off from it completely, but my Dr replied, “Do you really want to find out how bad your symptoms are without it?”

I'm so very tired and thinking much of the fatigue is from being in so much pain for almost a week now.  My whole body aches, especially my wrists, fingers, toes, ankles, and knees.  Sometimes I get flashes of hot pain in those parts and I'm getting muscle twitches in various parts of my body.  Mino dose just adjusted again to 50mg/daily this past Monday from 100mg MWF.  Symptoms have been increasing for about 6 weeks now.  (I really, really hate the 'brain fog'!)

With reading here and PM discussion with Maz last month, I'm guessing I might have more than RA in me.  I've never been tested for anything else – yet. 

Another thing that has been on my mind: I've had diarrhea (after being extremely regular my whole life) for around a year prior to my RA diagnosis June, 08.  Drs, after much testing, could not find any cause and Gastro Dr said it has nothing to do with RA.  Since starting Mino I find that my 'good' days with few RA symptoms there is no diarrhea, but my flaring (or herxing?) days, it's right back.  Anybody else have this or have any ideas about it?

[Parisa]

DiamondTNT,

One of my husband's initial symptoms was diarrhea along with shortness of breath, low grade fever, aches, sharp pains, swollen joints, etc..    Those initial sympoms were what made me it impossible for me to believe in the autoimmune connection.  My husband has Lyme and Babesia probably mycoplasma too.  I believe in his case the gastro issues are more Babs related but who knows?  Can you find something that works for the pain?

[Susan LymeRA]

Well, I'm no doctor but here are my thoughts.

1-Enbrel isn't working for you if you are having so much pain while on it.

2-Your diarrhea and your flares coincide?  That is no coincidence.

I don't know the answers but I do believe you should get to a lyme literate doctor and/or an AP doctor.  They are most willing to test for multiple things to try to get to the bottom of your issues.

With your diarrhea, I suspect you have leaky gut syndrome.  Also, most illness begins in the gut.  Lots of viruses and bacterias and parasites reside in the gut.  70% of our immune system is in our gut, so the gut must be pretty darned important to our health and wellbeing.

If you don't have a lyme or AP doctor near you, find an integrative doctor.  They at least will help you identify LGS, heavy metal toxicity, etc.  Their whole approach to medicine is to look at the whole body and find and treat causes.  That is not too far off from what an AP doctor would do. 

Susan

[DiamondTNT]

Thank you!

My AP Dr is also new to it so we are learning together and she is taking what I learn along the way.  She did just talk with Dr S last week for the IV 'recipe'.  I'll talk with her this week to plan our next steps.  I'm thinking testing for various infections is next.

I never did think the Enbrel was doing much for me and have been on it since late September.  I broke down last night and gave myself the shot, but am not much better yet.  I have had days, up to 10 in a row in middle January, where I had very few symptoms and felt like I could even run if I needed to.  I took a little over a mile walk last Friday AM, but when I made it back home I was exhausted and my knees and ankles got progressively worse afterward.  Still not good with something cracking with almost every step along with the pain. I'm having more and more trouble opening jars/bottles, etc., as my fingers and wrists keep going downhill.

Pain management… what to try next that will help with the pain and not do too much damage along the way? Trying to balance pain/inflammation so the antibiotics work best is difficult to say the least.  I realize I'm still new to this and still have so much to learn… and very apparently still a very long way to go.  I keep telling myself “you can get through this no matter what!”, but some days the depression is hardest to fight.  I hate taking drugs, but will do whatever it takes – within reason.  I'm having a hard time figuring out what's reasonable and what's not and what to try next.

Guess the best and most reasonable step is testing for all the various infections and fighting with the insurance company will come with that.

[Susan LymeRA]

Diamond,

I so know just how you feel.  I bet most people here have felt exactly like you.

When I was first diagnosed, I had no one to turn to but a rheumatologist who did not believe ongoing infection could be the root cause.  Even though I had a positive Lyme test he said “the lyme is gone and you are left with RA”. 

I didn't believe it, but at that moment, I had no knowledge other than my own medical history.

Thank God for this internet.  A friend of mine who is a doctor's wife just the other day told me how dangerous the internet is for medical information.  I had no good response for her because she is convinced and nothing I have said so far has changed her mind.

There are many doctors out there who think you should just leave it all to them and don't educate yourself.  Walk away from those doctors.

My internet lyme connections quickly gave me stories of others diagnosed RA when really it was lyme. (personally, I don't think they are separate) I found this website when I searched lyme and RA.   I found many other websites giving all kinds of possible triggers to RA.  I made a list and began tracking down dentists and doctors who would help me test for and identify which causes related to me.

God heard my desperate prayers and led me to the right doctors.  I did not go through the maze of doctors so many people do who give them wrong diagnosis and poor treatments and finally tell them it is all in their head.

The first rheumatologist was angry when I asked for minocycline but he did prescribe it.  A biological dentist recommended a family physician who practices CAM medicine and that man saved my life.  At the time I met him, my blood was so thick I believe a heart attack was eminant.  He saw how inflammed I was.  I was too sick to drive down and back to see him and had to stay in a hotel overnight.  The drive was only 2 1/2 hrs away. 

My 80 y.o. mother went with me and she had to open doors, water bottles, help me dress.  How humiliating.  I was supposed to be her help, but she was the healthy one, not me.

Dr A immediately began IVs of Myers Cocktail (vitamins) glutathione (the main detoxifier in our body) and lipostabil (to thin my blood).  He ran a blood test for food allergies and I stopped eating foods that I tested sensitive too.  Some of these foods were quite healthy like red bell pepper, lettuce, chicken, egg whites, dairy and soy.  But I was reactive to them and cutting them out of my diet made a big difference.

The swelling in all my joints began to drop.  He had me on supplements galore including anti-inflammatory ones and enzymes and CoQ10 for my heart.  High doses of Vit C which brought my blood pressure down.  I began eating foods that are detoxifying and slowly my strength came back.  I was able to make the drive down and back in one day.

Through all of this, I also took 100mg Mino MWF.  If I tried to increase the dose, I would get the lupus rash on my face.

After one year with him, the rheumatologist diagnosed me “nearly dormant”.  One year earlier I had been a high moderate, just 4 pts from severe. 

At this point, I found my current rheumatologist who practices CAM medicine as well as traditional meds. 

I highly recommend you try to find a doctor in your area who practices CAM medicine.  This will probably be in addition to an AP doctor.  You really need both.  After you have done all you can to reduce inflammation in safe ways such as diet and supplements and AP, then if you still need additional “big gun” support, go for it.  At that point, Enbrel or something similar might do the trick.

For me, the very first dose of Enbrel stops my pain, but I believe that is because my pain now is so minor.  If I was still eating the wrong foods and not taking AP and not supplementing as needed, I wonder if Enbrel would have been enough?

Susan

 

 

 

[DiamondTNT]

Thank you, Susan!  My Dr is very much into all things that can help and she is scheduling the infections tests that I will get done this week.  Looks like I'll be doing the IVs soon.  I'll ask her about food sensitivities testing next.

I broke down again and took an Oxycodone about half an hour ago and will probably go back to bed for a while.  I hate taking one, but need some relief right now.  At least I can go to bed knowing more positive steps are on the way.  I fight so hard to just ignore it all while waiting for the next step, but sometimes it just hurts too much.

[Author]

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