Too much? Too little? I’m worse?

[DiamondTNT]

Hi everybody,

I’m so confused now. After getter better last year I now feel like I’m getting slowly worse. I seem to only feel decent when I do the Clindy IVs then drop right back to hurting all over again. My knees and elbows are definitely getting worse and the least little ‘injury’ to any joint never seems to get better.

I’m doing my own IVs and trying to get 2 – 5 in every other week. I take 100 mg mino twice a day on most days when not doing the IVs and take a day off everything except the Celebrex every once in a while. Hard to keep a positive mental condition when it feels like I’m slowly going downhill but, I keep trying.

Celebrex and the antibiotics along with vitamins/minerals/probiotics are all I’m on right now. I do need to get some new blood tests and will when my Dr gets back to his office mid April.

Am I doing something wrong? Do I need more or less? I’m confused and tired and can’t help thinking about something like Orencia – but I really don’t want to give in to anything like that… then think ‘maybe just for a little while’…

[nspiker]

Hi Diamond,

So sorry you feel like you are backsliding. That’s great that you have found a way to do Clindy IV’s on your own – how ingenious!

I see Dr. F. and he told me to keep taking the Mino along with the Clindy IV’s. So, that might be a place to start. Sometimes when you reach a plateau like this, you need to pursue further infectious causes like lyme. Have you been Igenex tested for lyme and/or co-infections?

Another thought is maybe you are doing too much Clindy IV’s, and you’re herxing? I recently experienced more inflammation and returning of old symptoms, and couldn’t figure out the cause. Ultimately, I found that adding another antibiotic to my protocol had caused the herx and return of symptoms. Since you have not changed anything with your treatment, it may just be that you have uncovered other infectious issues.

What is your instinct telling you?
nancy

[DiamondTNT]

Thanks for your response!

I’ve been tested a couple of times for Lyme, once 1.5 yr ago with a Lyme specialty lab in Florida and again by my naturopathic Dr in Missoula that specializes in Lyme, both negative.

I was a little worse a couple months back when I was taking 50 mg mino twice a day and got a little better briefly after upping the dose to 100 mg twice a day. It’s so hard to tell if it’s a flare or herx but, I’m thinking what’s happening to me is flare. I do feel pretty good day 2 of the clindy IVs and sometimes for the next day after them.

It really bothers me that a slight wrench of my index finger on my right hand back in January has never ‘healed’. My knees and elbows are slowly feeling worse and worse. My right knee had a slight hit by my husbands knee as he went to get up from the table a couple weeks ago and has not stopped hurting on that spot. I know I’m going downhill and don’t know why.

[gordbentley]

maybe MIL?? have you thought of that possibility? maybe get your ANA checked out

[DiamondTNT]

MIL?????? I don’t know what that is.

[gordbentley]

Minocycline induced Lupus. its a rare side effect of the medication

[nspiker]

‘ve been tested a couple of times for Lyme, once 1.5 yr ago with a Lyme specialty lab in Florida and again by my naturopathic Dr in Missoula that specializes in Lyme, both negative.

i don’t want to preach lyme, lyme, lyme, because I don’t believe it’s the infectious basis for everything. I was tested at least five times over the last ten years for lyme, by rheumatologists, neurologists, and PCP’s, because my symptoms (even to traditional docs) resonated lyme. Tests were always negative. My Igenex test was negative. Do you have copies of that test done in Florida that you could post. Do you have any positive bands on that test?

You’ve done well on Clindamycin and Minocin up until now. Sometimes, when you get one infection under control, another one that was in hiding comes out. The reason for recommending an LLMD is because, whatever the infectious basis, they will treat based on symptoms. Lyme these days is a multiple-infection-immune-suppressive disease and LLMD’s are the best at knowing what to do when basic AP no longer is working. Have you thought of going back to your naturopath?

nancy

[Joanne NJ]

I agree with Gord, you should check into the drug affects of mino, your story sounds so similar to me, I also did great on mino for almost a year, then suddenly worse. Its called DILE or Drug-induced lupus erythematosus. If you search the boards here, you should find some discussions and info.

[gordbentley]

It should also be noted that MIL is extremely rare, but a few members have had it, they simply switch abx and then try it again down the road. ask Maz she knows alot on this issue.

[nspiker]

I just had a thought. Are you on brand named Minocin or minocycline? Some of the generic minoycline is not as effective as others, and sometimes pharmacies switch manufacturers without you knowing. This can create problems. I was just reading about a woman who had a major setback when her pharmacy switched manufacturers.

[Rockin Annie]

Hi Diamond,

Gee I do feel for you, I was in the same situation last Nov. with my feet and fingers doing funny things, I was advised to go back onto MTX 5 mgs because more damage could happen. After lots of thought I decided do what my Doc said and since then my wrists have lost a lot of the inflammation. I can actually turn my hand over without pain and able to accept money change, without looking deformed. So a combo of abx and Mtx is working very well for me for a while at least.

Sometimes we need to listen to our bodies. I do hope you come to a decision quickly as erosion in the joints does happen very quickly, as in my case……………all the best in what ever you decide to do………….Annie

Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

[DiamondTNT]

MIL… sounds possible… but, but, but… the dose is so small and, and, and… I don’t want it to be MIL (I’m whining) 😥 . I’ll chat with my Dr about this and see about changing my antibiotic.

The only mino manufacturers I’ve used are Teva or Watson. Right now and the past year it’s been Teva. I cannot afford the real thing but, I thought Teva or Watson were OK. Which manufacturer(s) are better?

I do keep thinking of Lyme and it being a real possibility. I will be seeing my naturopath Dr in August. I’ll see if I can get a copy of the FL lab test results. This roller coaster I’m on lately is not fun at all.

I do not want to add any of the bad drugs but, steroids and/or something that would give me some relief are so tempting. I think the only way I could get any of those is to either fly back to FL to my Dr there or find another one while we’re travelling. It would be a thousand times easier not to add one of those drugs.

I love this place! Can’t thank everyone enough for all your help.

[gordbentley]

Teva worked alright for me and a lot of us on this board swear by it. however i have found the APO brand is what works best for me. Maybe its time for you to do a switch up to doxy or something?? maybe your deficient on a mineral of sorts? may want to look into magnesium, or if your having yeast issues this may also contribute to joint pain? maybe you have a co-infection? it could be a lot of things I guess you just gotta play around with it? wish you the best and remember MIL is pretty rare!! 😀

[gordbentley]

nspiker is also right too, switching brands can be a tough job, i had major herxing and flaring for a month when i switched back to APO from TEVA. I am completely joiint pain free now that i switched back but not without paying for it first with a major body herx/flare. it was not fun!! Oh and it should be noted that food allergies/sensitivities can cause pain. sugar and grains are usually the culprits and many folks have had success going starch free, this is not just a swallow a pill and stay well treatment plan unfortunatly i think we all wish it was though, I have given up sugar 99% and I eat no prepackaged foods, everything should be natural!!

[DiamondTNT]

Thank you! APO mino is not available in the US. I still have some 100 mg Doxy I tried last year and herxed so badly I went back to mino. I’ll try finishing that and see what happens. I doubt it’s MIL.

I know that the lower dose I was on for so long (50 my twice a day with some days off) was no longer working and came to the conclusion that flaring is what was happening to me. Maybe the 100 mg twice a day is no longer enough either. I’ll try switching by using the Doxy I have and consider adding Zith at least once a week.

[Author]

Posts