swelling & very concerned

[2011Rio]

Hi,
Still new at all of this and not sure if my doc is taking me down the right path. I have been having a bunch of swelling in fingers, hands, wrists, knees, ankles, feet…especially fingers. I am concerned that this will lead to damage of my joints. Also wondering how much swelling is too much for the abx to be effective. I am having a hard time figuring out if my bad days are from herxing or from flaring. Looking thru my journal it seems like there has been very very little progress and the good days and bad days go back and forth with no increase in the number of good days, so it seems to me, but then it all seems to be a blurr trying to figure this out.

Does anyone know what I can do to decifer all this, so I can make some progress? Should I take a break? Should I detox? Should I increase my dose? My dose rt now is 50mg Mino on Mon. & Fri..

Also, what have any of you done for swelling. For my fingers it has been going on for months. I’m on about 12mg pred. a day and naproxen 500mg 2x day.

Thank you for any help.
Tricia

Diagnosed w/RA 2011
Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
metronidazole 500mg 1tab,3x a day M-F:
doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
vit c 2000mg daily; Actemra 10/2015-present (may come off since
lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
(weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

[lynnie_sydney]

Hi Tricia – sorry to hear you are having such problems with inflammation. You may need to put some more information in your post to get responses that will be helpful to you. Or perhaps add more info to your signature – what you started with and what you’ve changed and when.

My memory is that you were doing quite well on a very low starting dose and that the trouble began when you increased dose and days? Also that you were reducing prednisone? Maybe a summary of what you’ve done and what’s happened in the 6 months since you began AP will elicit some ideas from others that may help. It certainly seems that it’s time for a review now that 6 months has passed and you are not seeing improvements

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[richie]

Hi–50 mg of minocycline 2x a week is a very low dose –you may want to talk to your doctor about increasing the dose –

richie

[2011Rio]

Thank you, Lynnie and Richie.

Lynnie, good idea, lol.
Richie, the doc says to add Wed. at 50mg mino.

Ok, for the history. In Jan. when I saw a rheumatologist he put me on steroids right away and wanted me to take methotrexate. I took the steroids but not the meth.. This was the end of jan.. In the beginning of March I started some IV’s (all I know is it was anti-viral & anti-bacterial), I did two or three of these and then started taking doxicycline 100mg, Mon,Wed,Fri. for about 2wks and then I switched to Mino 100mg. After the IV’s I had to increase my prednisone up 20mg a day. Things were not too bad before I started IV’s. There was little if any swelling but once I started IV’s and antiboitics I started having all kinds of pain and inflammation. That’s when the pred. was increased. I only took one dose of mino at 100mg because I had extreme herxing, so we cut it down to 50mg and only Mon & Fri.. In April, even though there was pain and swelling, I starting coming off of pred. because of the side effects. Coming down about .50mg each time, I am now down to about 12 mg daily. I am still tapering off of it. For the last two months it seems like I have gone back and forth from really bad days to ok days but not having any increase of good days over the bad days and at times having more bad days than good within a weeks time. For instance, last Thurs was a really bad day, then Fri was much better, Sat. was a bit worse, Sun. a little more worse, then Mon. was real bad but not as bad as Thurs., and now Tues was much better than Mon. I have also been on a cleanse for my gut for two weeks for candida and any other bacteria. Here is what I am on rt now.

50mg Mino M,F; naproxen 500mg am & pm; 12mg pred/daily
Vit C 500 once daily; a liver cleanse; B vit complex; nato.; enzymes;nac;cardio health;lauricidine
Armour Thyroid 45mg/daily;

If I have forgotten anything I post again, but any suggestions are greatly appreciated!!!!!
I’m gonna increase mino in the meantime. Should I also take mino on Wed at 50mg so it would be taken M,W,F or increase to 100mg for M & F??? Any suggestions?

Diagnosed w/RA 2011
Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
metronidazole 500mg 1tab,3x a day M-F:
doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
vit c 2000mg daily; Actemra 10/2015-present (may come off since
lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
(weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

[PhilC]

@2011Rio wrote:

I’m gonna increase mino in the meantime. Should I also take mino on Wed at 50mg so it would be taken M,W,F or increase to 100mg for M & F??? Any suggestions?

50 mg MWF, which is what your doctor said.

Phil

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

[2011Rio]

Hi again, Since I was last on here, I went to see Dr. F. I wanted to rule out any Lyme Disease, which he did. On my first visit he told me that I was not at a therapeutic level on the Mino. (50mg 3x wk) After being seen by him for 12wks he decided that the Mino was just not doing the job alone and added Plaquenil. I will go back to see him again this month.

After reading some of the posts on here again, it seems as though I very well could be one who does not tolerate the Mino at this point. So I may ask him to switch me back to Doxi. Its because I seem to continuely be in a herx!! it has been about a year and I am not much better and I must be able to take care of myself and my boys who are still at home.

Doctor’s full name removed as per RBF policy. Thank you for your understanding. RBFV

Diagnosed w/RA 2011
Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
metronidazole 500mg 1tab,3x a day M-F:
doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
vit c 2000mg daily; Actemra 10/2015-present (may come off since
lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
(weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

[2011Rio]

Hi again…my internet is trying to sabotage this mess. lol 🙂

My joints have been extremely swollen for about a year and I just cannot risk any damage to them anymore. However, I did notice that many are saying the a detox regimen that works for me can make a big difference with the swelling. Unfortunately because of money I have been very limited on doing much. (a vicious cycle with RA, can’t work, no money) I am going to give this a greater amount of my attention and see what I can do.

I just know I’m leaving something out for you to know, but your suggestions are greatly appreciated.

Thanks
Rio

Diagnosed w/RA 2011
Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
metronidazole 500mg 1tab,3x a day M-F:
doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
vit c 2000mg daily; Actemra 10/2015-present (may come off since
lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
(weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

[Maz]

@2011Rio wrote:

Hi again…my internet is trying to sabotage this mess. lol 🙂

My joints have been extremely swollen for about a year and I just cannot risk any damage to them anymore. However, I did notice that many are saying the a detox regimen that works for me can make a big difference with the swelling. Unfortunately because of money I have been very limited on doing much. (a vicious cycle with RA, can’t work, no money) I am going to give this a greater amount of my attention and see what I can do.

I just know I’m leaving something out for you to know, but your suggestions are greatly appreciated.

Thanks
Rio

Hi Tricia,

Just saw your post and was taking a look at the drugs you’ve listed in your sig line, as follows:

“RA 12/2011; Minocycline 50mg 3x/wkly
Plaquenil 100mg daily, Meloxicam, Armor Thyroid, Amitriptyline, & a muscle relaxer, acid reducer, D3 1000mg daily, Probiotic daily”

Noted you’re taking an “acid reducer,” but was wondering what type? If it contains minerals, are you ensuring that you take it well away from your mino?

Re: the Amitriptyline, I just checked this drug out and it seems that one of the serious side effects is muscle pain. You are also taking a muscle relaxer. Could you be taking one drug to offset the side-effects of the other? Just a suggestion, but maybe worth checking into with your doctor?

Is it Dr. F in CA you are seeing or Dr. F in AZ?

Has anyone thought to test you for drug-induced lupus?

Can you share your labs when starting AP and what they are now? I.e. RF, anti-ccp, ANA, CRP, SED rate, any other abnormalities?

Amitriptyline is also metabolized through the liver through some major detox pathways and may cause liver damage in some. This is not to worry or concern you, just to say that when the liver is under a lot of stress, trying to break down some drugs, it will definitely be harder for the body to release toxins and this could result in building hypersensitivity. There are some very simple things that can be done at home to help the body to detoxify that aren’t expensive. If you click on my sig line, you’ll find my Personal Progress thread (last post) with a list of things I’ve tried for detoxing that have all had some good effects. Anything should be checked with the rxing doc beforehand, of course. The weird thing about hypersensitivity is that rheumatoid labs, such as RF, anti-CCP and ANA may well look improved, but inflammation is still high. So, if these labs have improved since starting AP, then it would indicate that the therapy is working, but when inflam is still high, the body is having trouble getting rid of bound immune complexes (antibodies bound to bacterial antigens) and these recirculate around in the body and get up to no good.

Also, are you still weaning prednisone and, if so, what is your schedule for doing this? Drug rebound can be a consequence of weaning pred and it can be a very difficult process, the last 5mg being the biggest challenge. Some folks can take a year or more to get off the pred, doing alternate day tiny, tiny reductions or .5mg or less, stabilizing and then reducing again.

If you saw Dr. F in CA, unfortunately, he isn’t Lyme Literate (Lyme Literate means a doctor has received ILADs physician training and adheres to ILADs diagnostic and treatment guidelines). Dr. F. in AZ is “semi-Lyme Literate” and I use that expression with care, because he’s a really smart guy – a researcher-physician, but he’s forging his own path on how infectious causes relate to rheumatic diseases and this is brand new territory. He’s sort of a lone ranger in this way. I’m just kind of surprised if you have seen one of these two docs and have not had any follow-up to tweak your protocol since last summer and seeing no improvements in symptoms since then. Can you elaborate more on this side of things, too?

Hopefully, we can figure out a bit better what is going on. Certainly a change to doxy may be helpful if you’re not tolerating mino, but it would be good to know why this is happening and if you are still not on a good therapeutic dose for you.

Thanks!

[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.

[2011Rio]

Hi Maz, thanks for the input.

Ok, on the labs I will have to work on getting a copy from dr.. However, he did tell me that they are still very high and hadn’t really changed. I might not be remembering correctly so I will double check on it.

I went to Dr. F. in AZ. He did tell me all about his research. How he has obtained a specific microscope for his research, which will let him see way more than others have in the past. He believes that RA might be a bit more complicated than Dr. Brown’s research had indicated. Anyhow, in regards to my tx, he told me that he likes to give it “x” amount of weeks before changing things. So, on my initial visit he wanted to increase my dose to 100mg daily. I asked if I could start with 3x a week, being scared of how I would react to so much mino. I couldn’t even get one dose out of the 3 days at 100mg without becoming very ill. Herxing would be an understatement…thought I was going to die at times!!

Diagnosed w/RA 2011
Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
metronidazole 500mg 1tab,3x a day M-F:
doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
vit c 2000mg daily; Actemra 10/2015-present (may come off since
lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
(weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

[2011Rio]

Ok, bare with me please, my internet has been kicking me off.

I don’t want to forget to say this. In spite of not responding well on mino, when Dr. F. had me try to increase I did see swelling go down a tiny bit, others wouldn’t know, but I did. I could feel some changing inside too. Since I have been extremely swollen for so long and both he and I are concerned, he did not feel it was enough in my case. And I don’t think I could handle responding to the dose. I was actually having my blood sugar level drop and on the verge of passing out and a handful of other symptoms, like almost being completely disabled. I just couldn’t move my body.

I am currently on about 8.5mg of prednisone and haven’t tried coming down for about 2 mos. (I forgot to list that)
The muscle relaxer at one time was for my neck, but have been on it for a fracture in my back now. The name of the acid reducer is Ranitidine 300mg daily. Not sure if I answered all your questions, Maz. I’ll have to recheck.

Thanks

Diagnosed w/RA 2011
Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
metronidazole 500mg 1tab,3x a day M-F:
doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
vit c 2000mg daily; Actemra 10/2015-present (may come off since
lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
(weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

[2011Rio]

Hi Lindsaylee,

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

Thank You

Diagnosed w/RA 2011
Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
metronidazole 500mg 1tab,3x a day M-F:
doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
vit c 2000mg daily; Actemra 10/2015-present (may come off since
lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
(weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

[Maz]

@2011Rio wrote:

I was actually having my blood sugar level drop and on the verge of passing out and a handful of other symptoms, like almost being completely disabled. I just couldn’t move my body.

I am currently on about 8.5mg of prednisone and haven’t tried coming down for about 2 mos. (I forgot to list that)
The muscle relaxer at one time was for my neck, but have been on it for a fracture in my back now. The name of the acid reducer is Ranitidine 300mg daily. Not sure if I answered all your questions, Maz. I’ll have to recheck.

Thanks

Tricia, the addition of Ranitidine to your protocol is intriguing me. Have you been diagnosed with Helicobacter Pylori? If so, this stomach infection has been linked to RA in studies and treated successfully with H Pylori abx (not just mino). This could be an important clue as to what may be going on here and your protocol may need to be tweaked to treat this infection….unless it was prescribed for some other reason other than acid reflux?

H Pylori is another type of spirochetal infection, but can be just as damaging to the gut and other tissues of the body, like joints, as Lyme disease. It also requires combination therapy and usually bismuth is prescribed to reduce acid reflux.

http://www.helico.com/Marshall’sTreatments

http://www.ncbi.nlm.nih.gov/pubmed/12144579

http://www.ncbi.nlm.nih.gov/pubmed/12102474

Tricia, saw your PM and will go answer that now. 😉

[PhilC]

Hi Tricia,

I see that you are taking vitamin D. Are you taking any other vitamins or supplements? Have you made any changes to your diet since getting RA?

Phil

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

[2011Rio]

Hi Phil,

I’m not taking any other supplements right now. I will be getting some vitamin C (sodium ascorbate). As for my diet, it has changed some, more carbs, because I couldn’t do as much after I fractured my back.

Diagnosed w/RA 2011
Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
metronidazole 500mg 1tab,3x a day M-F:
doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
vit c 2000mg daily; Actemra 10/2015-present (may come off since
lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
(weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

[Author]

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