Prednisone while on Mino

[jasregadoo]

I’m new to AP, about 1 month in. 2 weeks ago I had a birthday party to attend, and decided to take some prednisone to help myself with energy and pain. I’ve been taking a small dose daily or sometimes every other day since. I checked with my doctor, and she said I can take 5mg daily if I want to. My rx is for 2.5 mg, and I’m thinking I’d rather take 2.5mg either every day or every other day.

I want to avoid the side effects of prednisone, but I’m hoping I could do this for just the next month or so, and since it’s a small dose, hopefull it won’t counteract anything else I’m doing.

I’m also taking sulfasalazine 150mg 2x a day
Minocycline 100mg MWF
Aleve 2x a day, 1 tablet each

Does anyone have experience with prednisone while starting out on AP? I don’t feel like I NEED it…I was off of it for a couple of months. But the days when I do take it are easier than when I don’t.

Thanks so much,

J

[MEmily]

I take prednisolone, but only when I have a flare up so that things calm down. I take minocin 5x wk, 100mg. When I do take prednisolone, I take 30mg a day for one week, and then I stop. By then, the flare is normally gone. I also take methotrexate once a week. I was diagnosed with RA about a year ago, and my rheumatologist says it’s about as nasty as she’s ever seen. She says the prednisolone does not interfere with the mtx, and she’s pretty sure that it shouldn’t obstruct an antibiotic, but it sounds like you’re taking yours in a completely different way than I do.

I’ve been taking mino for almost 9months: 3x wk for about 8 of those months now and only recently went to 5x wk. I keep waiting for it to help me out the way it’s helped other people, but it varies so much from person to person, it’s hard to compare.

[jasregadoo]

Thanks MEmily, I do hope the mino helps you, and me as well. I’ve used the prednisone in larger doses (20mg) in the past, but tapered off slowly. As I tapered, much of my pain returned, though not as severe as before using it. The extreme swelling in my foot and ankle never returned, nor did the tightness in my calves. Just the inflammation in my hands and pain everywhere.

I dream of the day when I’m in full remission and can wear my wedding ring again. 🙂

[PhilC]

Hi,
@jasregadoo wrote:

I want to avoid the side effects of prednisone, but I’m hoping I could do this for just the next month or so, and since it’s a small dose, hopefull it won’t counteract anything else I’m doing.

It’s more likely to be helpful than to counteract anything else you’re doing.

Phil

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

[Maz]

Hi MEmily,

Just a few fellow patient thoughts for you to ponder and discuss with your prescribing doc.

@MEmily wrote:

I take prednisolone, but only when I have a flare up so that things calm down. I take minocin 5x wk, 100mg. When I do take prednisolone, I take 30mg a day for one week, and then I stop. By then, the flare is normally gone. I also take methotrexate once a week. I was diagnosed with RA about a year ago, and my rheumatologist says it’s about as nasty as she’s ever seen. She says the prednisolone does not interfere with the mtx, and she’s pretty sure that it shouldn’t obstruct an antibiotic, but it sounds like you’re taking yours in a completely different way than I do.

Regarding your rheumy’s comment above about being pretty sure that immunosuppressive therapies don’t interfere with minocycline, it really depends if she’s only viewing minocycline as a (for off-label use) DMARD. Minocycline has many immune-modulating effects, which is why it’s classed as a DMARD, not least of which it blocks the joint destructive enzyme in RA, called, collagenase. However, the actual anti-microbial effects of your low dose protocol will be greatly, if not almost completely diminished by both pred and methotrexate. This is because the tetracyclines are “bacteriostatic” in action and do not kill bugs outright; they merely disable them and a functioning immune system is essential to clear away disabled bugs. It’s quite important to know that different antibiotics have different actions…some will target cell-wall deficient bugs (like mycoplasmas) and some will target cell-walled bugs (like strep). This is one reason why different abx are prescribed for different susceptible infections.

Here is a description of bacteriostatic agents (like minocycline) on Wiki:

http://en.wikipedia.org/wiki/Bacteriostatic_agent

“Bacteriostatic antibiotics limit the growth of bacteria by interfering with bacterial protein production, DNA replication, or other aspects of bacterial cellular metabolism. They must work together with the immune system to remove the microorganisms from the body. However, there is not always a precise distinction between them and bactericidal antibiotics; high concentrations of some bacteriostatic agents are also bactericidal (e.g. minocycline in higher doses), whereas low concentrations of some bacteriocidal agents (e.g. penicillins) are bacteriostatic.”

I’ve been taking mino for almost 9months: 3x wk for about 8 of those months now and only recently went to 5x wk. I keep waiting for it to help me out the way it’s helped other people, but it varies so much from person to person, it’s hard to compare.

One of the potential reasons you may not be seeing much effect with mino is because you started on a low, pulsed dose which would be ideal for an RAer (going low and slow to avoid excessive inflammation from herxing) who is on no other drugs that are immune-suppressive. Increasing the mino dose by another 100mg on two days, last month, may be providing a little more DMARD action for you, but not a whole lot. The standard DMARD dose for mino is 100mg twice daily.

Was there a particular reason you started on just 100mg mino 3 days a week? Just wondering if you might find it helpful to speak with Dr. S. about your dosing regimen of mino in light of the fact that you are also using immune-suppressive therapies, but not seeing much benefit yet. It could be a bit of a “spitting in the wind” type of situation where you’re not experiencing much benefit as you’re just getting minor DMARD effects right now.

[jasregadoo]

Hi Maz,

Reading your reply to MEmily has me wondering whether I should quit my prednisone, though Phil thought it would be helpful. Is that because of our different use of prednisone, or is it because you and Phil disagree?

Thanks so much,

J

[Maz]

@jasregadoo wrote:

Hi Maz,

Reading your reply to MEmily has me wondering whether I should quit my prednisone, though Phil thought it would be helpful. Is that because of our different use of prednisone, or is it because you and Phil disagree?

Thanks so much,

J

Hi J,

I think Phil and I are on the same page – he was responding to your question and I was responding to MEmily and these are just different scenarios as you and MEmily are using pred in different ways.

Dr. Brown often used small doses of prednisone (5-10mg as described in the book) in the short term to assist a patient through initial herxing and any subsequent flares as this helps to help reduce the effects of the inflammatory barrier (tissue swelling) that can prevent the antibiotic reaching its intended target. A 30mg dose of pred over 5-days will definitely provide quick relief, but it also can confound the immune system of someone with chronic inflammation and there is the potential for tremendous rebound (and herxing) when the course is finished. This because treating a chronic disease with a large dose in the short term for inflammation reduction isn’t the same as treating in the same way for a short-lived inflammatory reaction, like poison ivy, which is expected to resolve.

The use of small doses of pred (up to 5mg and a max of 10mg) is said to be the equivalent of what healthy adrenals produce in a day. The aim is to only use it short-term, however, because to use it for extended periods can cause the adrenals to shrink and atrophy so that they no longer produce their own natural cortisone. This is why it can take a person months or a year to get off those last 5mg of prednisone if they’ve been on it for an extended period. The adrenals need time to regenerate and to stop pred suddenly, after an extended course of treatment, can cause a serious adrenal crisis. This is why higher dose shots of prednisone are used (usually in a taper-pack) to reduce inflammation quickly. This approach may well work when on other DMARDs or a biologic, but the other drugs will be masking some of the rebound effects.

The problem for rheumatics and high dose pred packs is that they give immediate, blessed relief, but this isn’t lasting, as the underlying cause (infection) has not yet been removed, so when the effects of the exogenous cortisone begin to diminish, the disease symptoms come back with vengeance. If one is lucky, the flare is knocked back, but in some cases, the rebound can be very difficult to handle. This is due to the immune system waking up and “seeing” the underlying infections again (which have had time to regroup and proliferate) and a herxheimer ensues (if one is on abx). This is similar to a woman with a rheumatic disease who goes into remission during pregnancy, due to the high levels of hormones the body produces to maintain the pregnancy and prevent fetal rejection. When the baby is born, however, hormones crash and she is left experiencing a severe flare of the disease while also trying to care for the baby (Brown talks about this in the book, too). There are safe abx that can be used during pregnancy to both continue treatment of the infectious cause(s) and to help offset the hormone crash when the baby is born.

Here are links to a couple of articles on the main site that provide some ideas for things to check if a person is plateauing or not responding to treatment:

https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/131.html

https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/89.html

There are “many roads to Rome” and no right or wrong way as each person has to deal with their rheumatic disease on a daily basis and needs to be able to continue living, working and functioning. However, the goal of most APers is to first get stabilized on the appropriate abx dose (taking into account other drugs being used and disease severity/duration, etc.), to allow the immune system to calm down in order to re-train it to react less violently to bacterial endotoxins. Once stability is reached, one can then slowly taper off the other drugs, continuing to lower the pathogen load and to ultimately revert to being on only the abx.

Does that help any, Jas?

[jasregadoo]

That helps immensly, thank you so much for your thoughtful and full reply. 🙂 It’s easy to get confused when there are so many different conditions out there treated by AP, and so many different points of view as to what is useful and what is not.

[Robert]

Hi there
My name is Robert i have severe R.A…I have had every treatment under the sun for this horrible disease you name it i have had it,,,enbrel,humira,rituximab,orencia,tocilumab,and a trial drug called sirukmab, plus all the tablets that are around ie,plaquenal,sulfadine,and the rest of the muck they give you,i have been poisoned with methotrexate a rare side effect of this horrible drug is to attack the lungs which it certainly did and wiped out 50% of both my lungs and i was in critical care for 4 days then another 5 days in intensive care followed by another 2 weeks in hospital,,what i would say is predisolone certainly saved my life although it did boost my sugar levels up as i was on 80mg of it for weeks,unfortunately the rheumy did not tell me to stop methotrexate if i developed a dry cough,what i will say is this RA is very smart and sooner or later it will get past the block of everyone of the above,everyone is diffrent i guess but in my case thats what happend,also yes the biologics brought my CRP down to 1 also the sed rate to bout 7,great you would think yes but thats all they done both hands were that swollen you think i had boxing gloves on notwithstanding the horrific pain in both shoulders and elbows,there is a lot of inflammotory cells in the body not just one,,think about 12,,interlukin 1 through 12,so what i believe is this,,you cant just go for one of them with the above drugs you have got to calm them all individually as calm one like say the t.cells which the biologics go for then the other ones which are left untreated will just double their output and thats what exactly happend to me. in my case Prednisolne and another anti inflammotry i will tell you on request are far superior than all the muck i have been given since being diagnosed in 2008,i came across Roadback by accident and looked at it logically,i have had infections since i was very young,throat infections,tonsils out at 2,followed by sinus infections since about 7,pains in chest since 8,,the RA attacking my lungs unbeknown to me at that time,,i am very glad i have had the opportunity to read about Dr,Browns work and its unfortunate we dont have people like him around today,seems most of the rheumies go with the drug companies word and take it as gospel,the last rheumy i had told me i had 2yrs to live and if i wanted to do anything i should do it now,that was 21 months ago so seems i only got 3 months left lol.lol 😯 ,,,yea right, we shall see,,what a moron that man is,even if that was the case he should not tell people that as a lot of people are not as strong in head as me. anyway thot i would share my story and if i can help anybody with the side effects of any of the useless meds i have been on in the past please ask..i believe mino is helping me albeit assisted by the wonder drug prednisolone also its a great pity the other one is illegal here at present but they are doing trials with it now,but as you know goverments drag their heels when it suits them.

[Robert]

Hi can anyone advise the reason for night sweats whilst on the above,i now take 5mg prednisolone in the morning and 5mg at night plus 100mg mino twice daily, all my blood work since i stopped both tociluzmab and sirukmab have shown elevated white blood cells worst being 14.9 and elevated neutrophils worst being 9.5,,hence the night sweats,i always thought this indicated an infection owing to immune system being surpressed this is still happening while on the above doses of pred and mino, it never happend while on the biologics also a recent ct scan showed pneumonia and i got rothymycin sweats ceased but came back again,as you know RA attacks the lungs which i think happend or maybe prednisolone is causing the infection i am not sure and no one seems to know why this is happening all the docs say oh its the RA.,,,would be grateful on any feedback on this if anyone has had a similiar exoerience,oh the bioligcs did stop it while i was on them only problem was my hands elbows etc were swollen,Crp was 1 and esr was 11 dunno why this,,a professor who prescribed me the biologics tole me crp and esr makes no diffrence to RA really and he dosent know why.,,what i do know is if i drink alcohol a few well more than a few night sweats cease probably because alcohol surpresses the immune system but can also induce pneumonia so i dont drink much now,,,any advice on above would be appreciated.thanks. Robert.

[Maz]

Hi Robert,

Nice to see you join us here! We’re just fellow patients, so can only offer fellow patient insight, but sometimes it can provide ideas to at least discuss various concerns with a treating doc.

@Robert wrote:

Hi can anyone advise the reason for night sweats whilst on the above,i now take 5mg prednisolone in the morning and 5mg at night plus 100mg mino twice daily,

Have you had a recent heart work-up? Hopefully, your rheumy or GP have been doing this routinely for you on an annual basis.

Sweats are reported by some to be associated with pred use and they can also be a part of the herxing process. You mentioned having tapered off higher doses of pred (not sure how recent) and, as the adrenals begin to wake up again, this can also be a kind of withdrawal symptom. If you run a search on pred and sweats, you’ll find a lot of patient reports and also medical literature on this symptom. Endocrines (HPA axis and thyroid) become very stressed with chronic illness, so a visit to an endocrinologist can sometimes also reveal hormonal imbalances.

all my blood work since i stopped both tociluzmab and sirukmab have shown elevated white blood cells worst being 14.9 and elevated neutrophils worst being 9.5,,hence the night sweats,i always thought this indicated an infection owing to immune system being surpressed this is still happening while on the above doses of pred and mino, it never happend while on the biologics also a

Elevated WBCs can have a number of causes (e.g. infection, inflammation and other more serious conditions). An interesting thing was that Dr. Brown found that herxing in rheumatics caused all kinds of blood anomalies, including elevated WBCs:

https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-The-51540

Laboratory tests can help differentiate between a worsening of disease (RA flare), a Herxheimer reaction to microbial toxins, and an allergic reaction to medication.

1.WBC will elevate in a Herxheimer and lower in a flare.
2.A Herxheimer will also exhibit a coincidental elevation of SED rate, gamma globulin and total globulin, and a fall in serum albumin and hematocrit. Patients who exhibit this flare reaction accompanied by anemia, depression of serum albumin, elevated total globulin and gamma globulin are probably reflecting a more intense reaction pattern to anti-L substances than in hematologically mild cases.
3.A marked increase in eosinophils (for instance about 30%) is an indication of an allergic reaction to the drug.

As the usual immunosuppressant drugs are intended to lower immune response, these can also mask underlying infections. As WBCs and neutrophils are the front line cell soldiers of the immune system, responding to infection, these would become better able to function without being dampened down quite as much.

recent ct scan showed pneumonia and i got rothymycin sweats ceased but came back again,as you know RA attacks the lungs which i think happend or maybe prednisolone is causing the infection i am not sure and no one seems to know why this is happening all the docs say oh its the RA.,,,would be grateful on any feedback on this if anyone has had a similiar exoerience,

Yes, RA and the drugs used to suppress it can affect the lungs, but where the paths diverge between Dr. Brown’s rationale and that of conventional rheumatology is that Brown thought it was the infections causing the RA and the immune system’s natural response to these that led to the tissue damage. Methotrexate can’t be used in anyone with lung disease because it can worsen lung fibrosis, for instance.

There are a number of things folks here use to promote lung health, in addition to their abx, so you can research these to see if you think they’d be helpful adjuncts for you, too. E.g. systemic enzymes (taken on empty stomach, but not to be used if on blood thinners), N-AC (N-aceytlcysteine), milk thistle, ALA (alpha lipoic acid), buffered ascorbic acid, curcumin, and really anything that promotes glutathione production. Cutting dairy out of the diet can also be very helpful for the lungs and ensuring there is no acid reflux that can be aspirated during sleep and eat away at lung tissues (so, raising bed head, for e.g.).

oh the bioligcs did stop it while i was on them only problem was my hands elbows etc were swollen,Crp was 1 and esr was 11 dunno why this,,a professor who prescribed me the biologics tole me crp and esr makes no diffrence to RA really and he dosent know why.,,

Suppressing inflammation and the body’s natural immune response enables proliferation of underlying chronic infections. Infections can still be damaging, even if the immune system doesn’t see them.

what i do know is if i drink alcohol a few well more than a few night sweats cease probably because alcohol surpresses the immune system but can also induce pneumonia so i dont drink much now,,,any advice on above would be appreciated.thanks.

Not sure why this would be, Robert, but drinking in the evenings might exacerbate acid reflux, which needs to be avoided with lung disease. Some alcohol is also grain based with a lot of sugar in it, so this needs to be watched, as many rheumatics suffer from gluten intolerance and sugars also need to be avoided while on abx to prevent candida overgrowth in the gut. Are you taking a good quality probiotic? Candida overgrowth is also worth reading up on, because pred alters sugar balance in the body and can lead to diabetes in the longer term. Many folks with diabetes or metabolic syndrome have underlying candida issues and certain systemic antifungals, like fluconazole – can help to correct the problem by reducing the candida load in the gut. One of the symptoms of candida overgrowth can be sweating.

I’ve also had run-ins with elevated WBCs and neutrophils. My doc has put me on Cefnidir, a third generation cephalosporin, which he says lowers WBCs. The following article describes the types of organisms this abx targets, so it might be why you felt better on Roxy (see second link below), which incidentally has been studied for RA:

http://en.wikipedia.org/wiki/Cefdinir

http://www.ncbi.nlm.nih.gov/pubmed/21904105

Hang in there, Robert….it can be a bit of a puzzle working out all the various factors that play into our individual cases. A wise doc says that someone who is chronically ill likely has about 16 nails in the bottom of their feet and to only pull one nail will leave that person unwell. So, it takes time to unravel the mystery sometimes. In the meantime, things that are within your control, like diet and detoxing are things you can work on yourself and gradually learn to implement. You should take things slowly and methodically, so you don’t get overwhelmed and can figure out what is helping and what is not. AP is not an overnight miracle, but a slow therapy, anyway, and Brown often commented it could take 2 – 5 years for remission to be reached. 😉

[Robert]

Many thanks for that info Maz that was very helpful,,i was just checking stuff i had written years again when i was in the uk before coming here to Australi,,,yea i remember the night sweats i had before i ws diagonosed with Ra,,,i was drenched every night for some 3 weeks thats when it all started,,the doc sent me into hospital,4 days later i was still having them,finally a consultant rheumi came round with some interns had discussed me at the botttom of the bed i heard him telling them i had TB,i was sick of them giving me nothing and sid to him look i dont have TB and just give me anti biotics which he said ok,,,i was started on iv i dont know what one will try and find out,,,anyway on the 3rd day no night sweats all gone 2 days later i was discharged, full marks to that anti biotic,,anyway as i said the night sweats only started after i stopped the last biologic the trial drug here at that time that was about 15months ago,,i had a brief time on imuran 7weeks and developed Shingles which is one of the side effects of it again the rheumi,sorry Professor who prescribed that drug failed to tell me it can do that and to stop if a rash developed,which it did and i was left in agony for months with shingles,,,anyway i decided to rid myself of everyone of those so called specialist and look for my own cure,there is nothing special about any of them well apart from the prices they charge!,,anyway i continued with prednisolone alone for some months till i discovered Roadback.org,,it was then i asked my gp for mino and he said yes there is some evidence for it,,,i was on mino initially for 3 months and i did feel a diffrence especially with my knees, anyway thats when the night sweats returned, after a week of this i went back to my gp and what he said was this,you shouldnt be taking them lol 🙄 ,,,then said you need to take probiotics ,,i said what he said thats what to do,,i said ok and got some,,some week later the sweats got worse,,i went to another doctor he sounded my lungs and said theres a bit of crackling in both of them and to get a ct scan which subsequently showed interstal pneumonia thats when he prescribed Roxymicin,i stopped the mino and took the roxy ,4 days later the night sweats ceased and i was pleased,,,after about 6 weeks i re-commenced mino,now 10 weeks later the night sweats have started again at the chest and neck level,,,,,i then researched mino and night sweats and yes apparently there is a rare connection with mino and pneumonia although i am not sure if this applies to me but its possible,,i have an appt. with the respitory people on the 23rd of this month so will ask their advice,,,i am not sure the mechanism of Roxymicin maybe it kills bacteria a diffrent way from mino but thats what happend and unsure what to do ,,anyone had the same experience?,,,any feedback would be appreciated…also what i have found with prednisolone is,,the diffrence between doses i find 10mg and 20mg just the same,,,10mg will work just as efficiently as 20mg,,well in my case anyway it does,,,think 10< mg predislone according to some big studies is acceptable,,i did ask the Professor i used to see when does the damage start he replied good question,,i said well give me a good answer then he didnt have one to give me, so i said ok i will find my own then….anyway thanks again for the feedback Maz.

[Maz]

@Robert wrote:

the doc sent me into hospital,4 days later i was still having them,finally a consultant rheumi came round with some interns had discussed me at the botttom of the bed i heard him telling them i had TB,i was sick of them giving me nothing and sid to him look i dont have TB and just give me anti biotics which he said ok,,,i was started on iv i dont know what one will try and find out,,,anyway on the 3rd day no night sweats all gone 2 days later i was discharged, full marks to that anti biotic,,

Well, I’m kind of gob-smacked that any rheumy would have put you on any form of immunosuppressant medication with a history of TB. Once a person gets TB and it’s treated, it remains latent in the body for life. It’s not infectious, but it can reactivate when immune function is down…hence all the warnings on the package inserts of biologic drugs.

http://en.wikipedia.org/wiki/Latent_tuberculosis

anyway as i said the night sweats only started after i stopped the last biologic the trial drug here at that time that was about 15months ago,,i had a brief time on imuran 7weeks and developed Shingles which is one of the side effects of it again the rheumi,sorry Professor who prescribed that drug failed to tell me it can do that and to stop if a rash developed,which it did and i was left in agony for months with shingles

Lots of infections can be reactivated with immunosuppressant therapies, including viruses, like chicken pox emerging as shingles (hence, why a person with compromised immune function should never be given a live or attenuated vaccine). 🙁 Just a fellow patient thought, but it’s possible that the cumulative effects of the various drugs had just led to both the TB and chicken pox being reactivated.

i went to another doctor he sounded my lungs and said theres a bit of crackling in both of them and to get a ct scan which subsequently showed interstal pneumonia thats when he prescribed Roxymicin,i stopped the mino and took the roxy ,4 days later the night sweats ceased and i was pleased,,,after about 6 weeks i re-commenced mino,now 10 weeks later the night sweats have started again at the chest and neck level,,,,,i then researched mino and night sweats and yes apparently there is a rare connection with mino and pneumonia although i am not sure if this applies to me but its possible,,

Yes, there is a side-effect that can occur with minocycline in some rarer instances, called, minocycline-induced pneumonitis. It can be diagnosed on x-ray, due to the “broken glass” appearance of the lung tissue. It would be good to get this checked and, if mino isn’t for you, to consider discussing other classes of abx that may suit you better. An antibiotic protocol, such as the Sriram Protocol might serve you better:

http://www.cpnhelp.org/treatment_protocols

i have an appt. with the respitory people on the 23rd of this month so will ask their advice,,,i am not sure the mechanism of Roxymicin maybe it kills bacteria a diffrent way from mino but thats what happend and unsure what to do

Yes, Roxy is a pretty great abx, so I understand, for RA, but it’s not available in the US. It’s an erythromycin derivative, similar to alternate abx that Brown used in the “mycin” family when a patient couldn’t use a tetracycline. It’s interesting that it has anti-malarial properties, because both tetras and hydroxychloroquinine are anti-malarials – also both used as DMARDs for RA – also have the same properties! The implication with this being that there is an infectious cause for RA, but that’s just in my humble opinion. One of the downsides of mycins is that they’re contraindicated (serious risk for irregular heart rhythms) for use alongside systemic antifungals (e.g. erythromycin), so this is something to be vigilant about if this class of abx is used, while also ensuring sufficient intake of good quality probiotics and limiting sugar in the diet.

,,anyone had the same experience?

I hope others here may have a similar experience to offer, Robert. The best thing you can do for yourself is to gird your loins and become your own best advocate, pushing for answers and the treatment of your choice. If you need help to find an AP doc, then Lynnie_Sydney has a list she can pass on to you.

[lynnie_sydney]

If you need help to find an AP doc, then Lynnie_Sydney has a list she can pass on to you.

Already sent. However, problem is with Robert residing in Perth W.A. and not able to travel. Almost no docs in this area . My best suggestion was for a GP or integrative doc who would be willing to consult with Dr S. Am wondering also whether it might be an idea to search for a Lyme doc as there seem to multiple issues to address?

I think Dr McF (Lyme ND) may occasionally visit W.A. on her trips to Australia. Might be worth getting on her mailing list.
http://restormedicine.com/naturopathic-lyme-disease-doctor/

Cant think of anything else to suggest…

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)

[Robert]

thanks for that info Maz and Lyn am sure this horrible disease can be surpressed and now i have some people with the same problems i am sure together we will prevail,,,,,i had a flair the other day it went for my left sacroiliac joint jee that was painful, it has never went for that joint before hope its the last port of call for it, anyway 10mg pred and 4hrs later i was ok its not came back,,got to admire the tenacity of the ra,,kinda funny too its a busy lil disease hey lol 🙂 .

[Author]

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