A new situation, need suggestions

[2011Rio]

Hi everyone,

I have been seeing small progress every week for the last 8 1/2 months, until Oct.,on the same meds I am taking now. Except for the dosing of the prednisone and the doxi. I have progessively weaned off the prednisone (in Feb. I was taking 20mg/day) and increased the doxi gradually to 100mg every 3rd day. I have been in a lot of discomfort/pain in almost every joint all year, but like I said I was having small improvements every week. Then about the first week into October I started having really bad days, with pain, inflammation and fatigue. Two weeks prior I increased the doxi to 100mg every third day, which was in increase from 100mg every third day for two doses and then 50mg on the third day from the last 100mg. (i.e. M – 100mg…..Thurs – 100mg…..Sun – 50mg) One thing that has been different is the length of time I have felt bad. Usually its just been a day or two then signs of progress after that and me feeling better than I was right before those couple of bad/herx days came along. This time its been intense the whole time with no letting up. The other thing I did different was take a homeopathy rememdy for detoxing for about a week. This was also right before (like a week) I started having such a bad time. I stopped doxi for about 1 week, I gained a very small improvement, might not even be able to say it was improvement. (hahaha) Now I have dropped the doxi back to 100mg, 100mg, 50mg, on every third day. A couple of days this week I had some noticable improvement, but today has been really bad again. I’m not sure what is going on. I think now that my pred dose is down this low, that maybe my immune system is kicking in more and more activity is going on. Therefore, making me feel bad because there is too much die off for me. Also, increasing the doxi may have been too much for me. I have never got this low on prednisone so I’m not sure to what extent it is affecting me. Like I said, I have been lowering my prednisone dose all along and increasing my doxi. Nothing has really changed except for taking the homeopathy detox, this is why it is confusing me. Any suggestions?

Thank you,
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

[2011Rio]

Wow…I was hoping to get some feedback. Since I have had this setback my dr. wants to get more aggressive by putting me on methatrexate or sulfasalasine. I agreed to the sulfasalasine. The day after my first dose I had very little pain!!! This is huge for me, but the second day was the complete opposite. I was the worst I have been in a year. I’m figuring that it caused a major herx and maybe I will have to start slow. ???

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

[laurawm]

Hi Tricia,

I know whenever I try a new homeopathic “detox” it often ends up flaring me from a herx reaction. What ingredients were in the detox?

I also just had to take a round of bactrim abx for cellulitis which is an antifolate abx like sulfasalazine – the herx was so bad after five days that I decided to switch to sulfasalazine for the remaining couple of days and again it was still very bad. Before I started the bactrim, I tried just the SSZ to see if it would take care of the cellulitis, but after two days and no improvement I went and got the bactrim script. But, those couple of days on the SSZ before the bactrim were very good joint wise, but after the onslaught of the bactrim, I couldn’t do the SSZ – so all of that said to say that yes, you probably need to start out slow if you desire to continue with the SSZ. It might be a good idea to get an MTHFR genetic mutation test done because if, like me, you have difficulty metabolizing folate, anti-folate antibiotics such as SSZ and methotrexate can exacerbate this condition. I ended up by the end of the time on the bactrim and SSZ not being able to sleep at all getting less than 6 hours sleep in 48 hours. I did take SSZ for three months when I was first diagnosed with RA and eased into it – I never saw a great deal of improvement on it until I started adding colostrum and other detox and adjunctive therapies, but when I went off it, I did notice a slow but steady increase in herx responses to various treatments, as the SSZ is good at keeping bacteria from reproducing at a fast rate via folate inhibition, but can also ensue a large die off in the same respect.

Are you still on 400mg plaquenil? When I tried plaquenil for several months, the herx was very strong, so this could also be a contributing factor. I’ve additionally had very significant yeast issues – you are taking a strong probiotic dose, yes?

It sounds like a good washout might be helpful and that your detox pathways are not functioning very well. Heavy metal chelation (I use EDTA suppositories), lots of enzymes, high veggie low carb diet, chlorella, high dose vitamin C and magnesium, espsom salt baths, metafolin L 5-MTHF, niacin, kombucha, and an infrared sauna have been very helpful for me in detoxing.

I hope you start seeing improvement again soon,
best,
laura

[2011Rio]

Hi Laura,

Thank you so much for your thoughts. This has been very discouraging, I never thought I would feel this bad again. Anyhow, I have never heard of a MTHFR genetic mutation test, but I’ll look into it. I am still taking the plaquenil and I am on a good probiotic. I am also going to add more to my detox program. So magnesium is helpful in detoxing? I did not realize that. As far as the homeopathic detox remedy, it is by Unda and is Unda #1, they have many numbers. You can easily find it on the web. There are too many ingredients to list. Again, thank you for the suggestions.

Be blessed,
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

[PhilC]

Hi Tricia,

How long have you been taking vitamin D, and what dose are you currently taking?

Phil

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

[lynnie_sydney]

Hi Tricia
To add to Laura’s thoughts on detox, I also wonder how fast you weaned off the pred. The adrenals need to wake up when they are no longer producing the body’s natural steroids because they have been coming from an outside source and coming off is always difficult. There are lots of ways people have approached this step. If you use the search function at the top of General Discussion first page and type in ‘weaning pred’ a lot of past discussion on this will come up for you to look through. Hope you feel better soon!

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)

[2011Rio]

Phil. . i was taking 1000iu daily for maybe a year. i just had my dr test my d level and it was very low so he has me on 50000iu once a week for three months, i have taken for two weeks.

lynnie. . i think it might be part of the situation. i stopped weaning off for now.

thank you
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

[PhilC]

Hi Tricia,

Just so you know, Vitamin D seems to make some people worse — they either can’t supplement with it at all or they might be able to take low doses of it, depending on where they are in the recovery process. For example, years ago if I took cod liver oil, or a supplement that contains vitamin D, the result was an increase in my level of pain. Now I can tolerate 1000 I.U. per day (but not more than that). You recently started taking a very large dose of vitamin D (albeit weekly). It is conceivable that the recent increase in your level of pain could be related to that.

I also think that your unusual doxycycline dosing schedule is probably hindering your progress rather than helping. Taking a lower dose every other day should be easier for your body to handle than what you’re doing, which is to take a higher dose several days apart. If 100 mg of doxy is a bit too much for you to handle when taken regularly, spreading the doses farther apart is a less than optimal solution because the level of doxy in your blood will still spike up to a higher level on the days that you take it, which will hit the “bugs” harder. In addition, you’re almost certainly not getting as much benefit from the anti-inflammatory effects of doxycycline by doing it that way. Does that make sense?

NOTE: Consult your doctor before discontinuing any medication or changing its dose.

Phil

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

[2011Rio]

Hi Phil,

So looking back at the things that changed when I started getting bad were, I had change my doxi dose to every other day, MWFSTTh (and so on), and I had taken a hemopathic remedy for detoxing the liver, gallgladder, kidney, for about a week. My prednisone dose was/is as low as it has ever been. Making me think that my immune system is more active and maybe it has contributed to some of this and I might have to go slower with everything if this is so. Therefore, here are the scenarios I thought I could possibly try. Oh by the way, your comment about the effectiveness (or not) of the dosing schedule I have been on does make sense.
1. I could go on a MWF schedule with doxi at…..100mg, 100mg, 50mg, for a few months. I was just thinking those levels because that was when I was making improvements. Keep my prednisone at it’s current dose of 7.5mg, but add something for my adrenals to wake up. Keep everything else the same, but do some easy detoxing things, maybe some diet changes. I just thought of a question. Have you changed your diet any because of the RA or whatever health issue you are dealing with?

I guess that’s only one scenario…haha. silly me! So, what does anyone think? Pleeeeeeeease, I beg you. Just kidding. Suggestions are very helpful tho. 🙂

Thanks,
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

[A Friend]

@2011Rio wrote:

Hi everyone,
….. stopped doxi for about 1 week, I gained a very small improvement, might not even be able to say it was improvement. (hahaha) Now I have dropped the doxi back to 100mg, 100mg, 50mg, on every third day. A couple of days this week I had some noticable improvement, but today has been really bad again. I’m not sure what is going on. I think now that my pred dose is down this low, that maybe my immune system is kicking in more and more activity is going on. Therefore, making me feel bad because there is too much die off for me. Also, increasing the doxi may have been too much for me. I have never got this low on prednisone so I’m not sure to what extent it is affecting me. Like I said, I have been lowering my prednisone dose all along and increasing my doxi. Nothing has really changed except for taking the homeopathy detox, this is why it is confusing me. Any suggestions?
Thank you,
Tricia

Tricia, I’ve not been online the last week or two, and don’t have time to read the replies to your post above. However, I will share what I learned in my own case… when I went from feeling much improvement, to gradually feeling bad and having gradually increasing pain… until the pain became very bad.

In my own case, after much concentrated searching/reading, initiated by a suggestion from a lady ND, was using the little pH testing strips first thing in the morning (before eating/drinking anything) to test my saliva, and also urine (just a quick touch of the strip to a drop of urine). My diet had been excellent, and I had done well for a long time. What I learned, as I studied, was that I did not have enough hydrochloric acid to break down protein in my diet to needed amino acids. Without the needed/necessary amino acids which the body uses to detox itself every night, the acidic wastes cannot be excreted, and the body MUST store these in tissues of the body. By the time the body stores these wastes, THIS MEANS THE BODY HAS ALREADY USED UP ITS AVAILABLE MAGNESIUM AND OTHER MINERALS needed for neutralizing these wastes so they can be excreted through the kidneys as urine. This acidic condition can begin causing ever increasing pain. I think of it as “my body’s cry for help.” Fortunately, though it took some dedication to finding the source of the pain, I learned what I personally needed to know. The ImmunoPro (nondenatured whey protein) turned out to be the best help for my own body. Definitely, add some of these words to your search mentioned above. It makes glutathione quickly, and gives my body what it needs to detoxify the body.

As I learned this, I also began learning about Magnesium Chloride and other needed substances/foods to help get my pH back to the correct balance. If we are overly acidic, more and more unfriendly organisms will multiply — producing more and more wastes. If you want to know more about this, you can click General Discussion, and next to the Topics is a little search window. Some key words in my above comments will probably find detailed information. Some words that come to my mind to use in a search are: pH testing, acidosis, magnesium, magnesium chloride. There are probably some more key words that will find posts. Will add some later if find good ones.

Best,
AF

[A Friend]

Rio,
I read and replied to your post. After clicking the post reply to your topic, the screen froze for a while. I assumed it did not post. In my reply to you, I suggested some words for your to use for finding information I felt could possibly be helpful for you… which had been very helpful for myself and turned around the acidosis/pain condition that had developed after doing well for a number of years. The search I did turned up the post I’d just thought was lost. (Haven’t figured this out; it’s a first for me.)

This is the link to my today’s post to you:
search.php?t=9718

Good luck in finding the answers to make you feel better.

AF

[2011Rio]

Hi AF,

Thanks you for the good input! I will be looking into this. I have been thinking along these lines, so it is good to hear this has been helping you.

Blessing,
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

[2011Rio]

Hi AF,

Thanks you for the good input! I will be looking into this. I have been thinking along these lines, so it is good to hear this has been helping you.

Blessing,
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

[PhilC]

Hi Tricia,
@2011Rio wrote:

1. I could go on a MWF schedule with doxi at…..100mg, 100mg, 50mg, for a few months. I was just thinking those levels because that was when I was making improvements.

You could try that, but I suspect that it may still be too much for you at this point in time.

In a previous message to me, you said:
@2011Rio wrote:

It has been about six weeks since I switched to 100mg doxi. 3x a week. The schedule at first was every third day for the first two doses and the last one on the fourth day following the second dose. Then about 4 weeks ago I tried to move it to every other day, for example, M, W, F, Sun, T, Th, and so on. It probably has been the last 2 1/2 weeks that I feel like I haven’t made progress and that I am in a lot of discomfort. My feet, hands, wrists, knees, are constantly in pain and swollen and are the worst compared to the rest of my body and it seems I am very tired all the time.

What you wrote there practically screams Jarisch-Herxheimer reaction. When people with a rheumatic disease first start antibiotic therapy, or increase their dose of antibiotic, it is very common for them to begin experiencing an increase in inflammation and pain about two weeks later. Although the time delay can vary from person to person, a two-week delay seems to be what people on this forum report most often.

Since you began feeling much worse after increasing your dose of doxy to 100 mg every other day, the logical thing to do is to decrease your dose to one that is more tolerable. An obvious choice would be 50 mg MWF or every other day. By the way, every other day (QOD) dosing is probably superior to a MWF schedule, but MWF dosing seems more common, probably because it is a bit simpler and easy to remember.

Prior to dropping down to a lower dose, it would probably be helpful to take a one-week break from the doxy — this is commonly referred to as a “washout” period. The purpose is to (hopefully) let things settle down, inflammation-wise, before resuming antibiotic therapy at a lower dose.

NOTE: Consult your doctor before discontinuing any medication or changing its dose.

Phil

P.S. Sorry for the late reply. I’ve been rather busy lately.

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

[2011Rio]

Hi Phil…..thanks for the input/insight. Sometimes, for whatever reason, we sometimes don’t see what might be obvious. Too much pain to think right….lol. I am doing a tiny bit better and I think this was after taking a short break. I did see an improvement (very small, but none the less) in my knees. The swelling had gone down to a point it has never been all year. This made me think that herxing has been/is the big issue going on. If this next couple weeks isn’t much improved, I’ll go even lower on my doses. Just not sure how much time to give it.

Be blessed,
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

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