[lyndsaylee]

Yes, that’s what I suspected. Now how to break it to the sweet kind person who gave it to me. ? Thanks for your replies.

[lyndsaylee]

Thanks, Phil. I am nightshade free (started a month ago) but sheesh, pepper is in everything! And if not pepper, potato starch! I am gluten free, dairy free, sugar free and nightshade free. Thanks for the link for the nightshade free diet. Maybe it will give me some good ideas for snacks.

The other night I had a chicken taco on corn tortilla. Not the best I know, but I was visiting my daughter and we needed to eat something. I could tell from the first bite it had pepper in it and who knows what else. I only ate one but boy did I ache that night.

Being on so many “free” diets, it seems like there’s not a lot left, especially in the snack department – and oh, on top of it I am supposed to gain weight! 😆 So it’s been challenging, but little by little I am finding things I can eat and adapting to this new diet. If anyone has any good ideas/recipes, please chime in.

[lyndsaylee]

Thanks Phil and Friend for your replies. Phil, I will try both kinds of Magnesium. I have only been taking Magnesium Citrate and sometimes take an Epsom Salt bath (magnesium sulfate.) I will get the Magnesium Malate and see if that helps. Thanks! I am taking that amount of Vit. D every day. I know – seems like a lot, right? But I’m trying to follow AP doctor’s advice. (I might not be getting exactly that much because the dosage is 1 dropperful = 5000 IU’s and my dropper doesn’t fill all the way.)

Friend, I am type O – which from my research is supposed to do ok with meat. Not only ok, but great. I don’t love meat as I said before. But I do eat it – mainly chicken and turkey. Rarely beef. I will have to get some ph strips and see where I’m at.

I’ve stopped taking calcium supplements at the advice of AP doctor. She said just take magnesium. So I haven’t taken Calcium for about a month. I’ll have to search the forum for lymph detox and read up on it. What did you do to detox? I don’t know what you mean by “it detoxes two sides of our body.”

[lyndsaylee]

Thanks for the info, jasregadoo. I guess it’s going to take some time for me to figure out what’s what. I love that you’re off Aleve – Yay! I would love to get off the Etodolac but presently that’s not an option. I am going to seriously try the diet at least for a while to see if I have any results. Dr. said eat as much meat as I want and include liver once a week which I thought was rather odd since many say vegetarian diet helped them. I don’t love meat but I eat some and I must admit I haven’t been able to get myself to buy liver, much less eat it!! 😀

I’ll give it a little more time before I start experimenting with Vit. D and Flagyl and of course, do them one at a time to see which – if either – is the culprit. So long as I can handle the herxing with Etodolac I’m thinking the herx is actually a good thing. ?? Comments, please.

[lyndsaylee]

I have had this problem for some time now. But it does seem to have gotten worse since the new medication. I haven’t been able to figure out if it’s from the PsA itself or the medications I have and am presently taking. Also, like I said, I lose a lot of sleep and the present herxing isn’t helping the situation. I do feel a bit better when I get a good night’s sleep. So, Todd, what did you do?

[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?

[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.

[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

[lyndsaylee]

1) yes, it’s the only antibiotic I’ve taken for the PsA. I was given Clindamycin twice for dental work, which I thought was probably a good thing. I’ve never had an AP physician. My rheumatologist prescribed the mino for me but didn’t agree with why it worked. (I have no insurance and go to a University teaching hospital) About 6-8 months ago I saw my rheumy for the last time. They did not make a follow up appointment. I guess they kind of booted me out of the clinic – I’m guessing because I wouldn’t take the medicines they wanted me to take. (Methotrexate and Embrel, primarily) They told me I could get the prescriptions from my primary care doctor.
2) Yes, I think I would need to take the mino twice a day. I tried mino once a day and it didn’t see to do much.
3) Yes, still taking the etodolac. I’m afraid to say I wasn’t doing right with that either. I had it in my mind to get off as many drugs as I could. I’ve been on etodolac for 8 years and I started thinking that was a long time to be on it. So I cut back the etodolac to once a day and I was fine for a while. It works really well for me. I know I need to take it twice a day while I’m having flares like I am now. And I guess I just have to not worry about it.

[lyndsaylee]

There’s a lot here so please read to the end.

Sorry to be just now getting back. Thank to Phil and Woods for your input. Much appreciated. Things have been crazy busy for me as my daughter is graduating high school and getting ready for college. Much inflammation, pain and fatigue is making it a real challenge just to sort of keep up. Actually I’m not keeping up. At any rate, I freaked out and went off the mino when I read that article about the overuse of antibiotics. Turns out, the Dr that wrote the article is past President of the Infectious Diseases Society of America and Founder of the Foundation for Bacteriology and the Virtual Museum of Bacteria. He has studied the role of bacteria in human disease for over 30 years and is the director of the Human Microbiome Program at NYU. He has and is still doing research on psoriatic arthritis which of course made me sit up. So, while digging around I found this – also from NYU: http://communications.med.nyu.edu/media-relations/news/study-links-intestinal-bacteria-rheumatoid-arthritis. Wowie, wow, wow!

Here’s another interesting article: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1479565/

So I think you’re spot on Woods and Phil about the extreme importance of being diligent to replace the good bacteria, while also being diligent about getting rid of the bad bugs.

Another problem I also encountered before which made is easy to stop mino is that I have osteoporosis and need calcium, magnesium, etc. Taking mino made it difficult to get the minerals I needed. Maybe I was just plain lazy and a bit rebellious. I just didn’t want to bother with it and it ticked me off to feel like I was chained to a clock that dictated what I could eat when (including probiotics and bone building stuff (gag).) I just kept hoping that someday I would wake up and this freaking disease would be *poof* gone. Well, that didn’t work.

So feeling plenty sorry for myself, I went back to trying to find some answers… and I googled the words “minocycline and osteoporosis” and look what I found 😯 – maybe y’all have already seen it, but it excited the heck out of me:
http://www.nih.gov/news/pr/dec96/nia-09.htm. So presently taking antibiotics is looking convincing. 🙂

Now may I ask your opinion on a few more things:

1) Will going off and on mino (several times over the years) increase my chance of having it become resistant?
2) I guess the thing to do is just have calcium mid day with mino in morning and evening. Is a two hour window enough or should it be 3?
3) I am having a bad flare and it is really attacking my neck and finger. The finger has a swan neck deformity from a forgmer flare and is presently really swollen and red and painful. I’ve been wrapping it (which is helping) and or putting it in an oval 8 finger splint if it’s not too swollen. Is it advisable to get a steroid shot? Anybody have any other suggestions?

My road back has been pretty bumpy and twisty – curving this way and that. Maybe when daughter is off to college there will be more time to study these things and focus on getting well. Thanks, all, for taking time to look at this. Hope it makes at least some sense.

Laura

[lyndsaylee]

I am also hypothyroid and major hair loss was one of the symptoms I had before I got medication (levothyroxine). I think it might also indicate when an increase in hormone is needed.

[lyndsaylee]

@2011Rio wrote:

Hi Lindsaylee,

I just switched to Meloxicam. I was on Naproxen before that. Any suggestions?

Thank You

I almost feel like a rat telling you that because right after I posted that to you I read John (Dragonslayer)’s “Long Boring Story” – which isn’t boring at all – he bemoans the use of them (NSAIDS). I must admit I have always wondered if they do more harm than good. At any rate, I’ve been taking Etodolac for about 7 years now and would like to get off it. It does usually do the trick for me however, in terms of reducing inflammation and pain. Etodolac is a cox-2 inhibitor which is easier on the stomach. Here’s a quote from a publication called InflammoPharmacology regarding it: Studies have shown etodolac to have no overall suppression of gastric or duodenal prostaglandins and endoscopic analysis with etodolac showed placebo level scores in comparison with ibuprofen, which showed inducement of gastro-intestinal (GI) side effects. This high degree of gastric tolerability was further demonstrated by microbleeding studies. The favourable GI tolerability profile of etodolac has been shown in long-term and large-scale trials and by routine clinical observation. In summary, etodolac is a well established selective COX-2 inhibitor that has been shown not to suppress gastric or duodenal prostaglandins, to have minimal hepatic or renal effects and to have favourable GI tolerability in comparison with ibuprofen.

Though this is a favorable overview, Etodolac, like all NSAIDS can still be dangerous. (You ought to see the warning sheet that comes with it!)

All that to say, before taking any medicine, it’s wise to do some research and give careful consideration and prayer beforehand. It’s a difficult call…

[lyndsaylee]

Ugh! I’ve been working on a post for the last 45 minutes and just lost it. Don’t have the energy to start over right now. Just wanted to say thanks to Maz and Friend for responding. I have been reading up on all you suggested. I even read John’s “long boring AS story” but it’s not boring at all. I have some of the same symptoms. Will have to read up more on his diet, etc. Yes, been off mino for a while. I started developing a problem that made me think I needed to take a break. I know I need to start back up – but just not doing it for some reason. I felt a lot better when on it. Initially it took a good long while to get results. I started feeling better when I upped the dose to twice a day every day.

Don’t have money for a chiropractor. But maybe I should try and see one just to get a better diagnosis and extent of damage. (used to see one years ago.) My neck is in real sorry shape. The last two days, as evening approached, I could barely move my head. My right arm hurt down to the elbow area. I upped the NSAID just to get relief. I worry about surgery. I wonder if I let it get too bad. Can badly damaged vertebrae be healed? Or does there come a time when surgery is the only possible help?

Well, I’m thinking I’ll do a little more research into John’s (Dragonslayer) diet. Anyone know how long do you have to be on the starchless diet to experience results? Is it feasible to be on a diet like this if I have to work? (I have to work. I ask because some diets require more preparation. Like, back in the day, I ate macrobiotically for a while, and it seemed like I was in the kitchen all day!

Will take this up tomorrow. Thanks again…
Laura

[lyndsaylee]

Just a thought: have you ever tried a different NSAID? It looks as if you’ve been on Meloxicam since July when you first posted. NSAIDS work differently for different people. Having the one that works for you can make a big difference.

[lyndsaylee]

YOWEE, Maz! Well, I didn’t have it for two weeks but I did have it for several days. I remember drinking lots of Aloe Vera! The esophageal spasm was different – there was no burning and when it was over, it was over – thank goodness.

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