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What a joy finding Road Back! I was diagnosed with RA 3/2010. It was traced back to the fall of 2009 when the doctor I had just ignored symptoms. It was a sudden onset throughout my body. Fortunately (or unfortunately!) my pain tolerance is high so I was just living with it, assuming getting older was my problem! But in March 2010 the pain caused a heart problem. After wonderful doctors saved my life and fixed the heart problem with Eblation, I connected with a Rheumatologist who quickly diagnosed me and started treatment. Initially she tried methotrexate (I’m one of the few totally allergic to it) and prednisone. The added the hydroxychloroquine Then she added leflunomide which I’ve discontinued.
I’ve also changed my diet and am trying to stay pretty much on a mediterranean diet.
After much discussion she agreed to try minocycline. I’ve now been taking it a couple of months together with the prednisone & hydroxychloroquine. I have been doing great with no pain and gradually getting some use of my hands with therapy. No problems walking anymore.
BUT a couple of weeks ago I had a major flare up. I passed out from pain and my husband had to take me to the ER. It took morphine and a major infusion of steroids to bring me back. What I find most unusual is that after the flare up is controlled I quickly return to (my) normal.
My goal is to get off the prednisone ASAP. After reading about reactions, is the flare up I had typical after being on the mino for a while? Or did the declining prednisone cause it?
Guess I’m still in the experimental stages of finding what’s right for me and appreciate the opporuntity to connect with so many others who actually understand! Thanks for any input.
Caroline,
I’m sure others can answer better than me, but I will say that it sounds like it could be the Herx. reaction… If that is what is happening, even though you experiencing worse symptoms, it is a good indicator that the minocycline is working. I have RA also, after I started AP, I got much worse, before I got better. Have you read the book “The New Arthritis Breakthrough” by Henry Scammell ? If you have not, I would suggest it to you, it will answer a lot of questions about this treatment. Also, you can use the search feature at the top of this site. Welcome to the Road Back site, you will find that we are just like family here, we help each other get through…. I’m sure someone more experienced than me will better answer your question..
Best Wishes,
Judy@caroline123 wrote:
I was diagnosed with RA 3/2010. It was traced back to the fall of 2009 when the doctor I had just ignored symptoms. It was a sudden onset throughout my body. Fortunately (or unfortunately!) my pain tolerance is high so I was just living with it, assuming getting older was my problem! But in March 2010 the pain caused a heart problem. After wonderful doctors saved my life and fixed the heart problem with Eblation, I connected with a Rheumatologist who quickly diagnosed me and started treatment. Initially she tried methotrexate (I’m one of the few totally allergic to it) and prednisone. The added the hydroxychloroquine Then she added leflunomide which I’ve discontinued.
My goal is to get off the prednisone ASAP. After reading about reactions, is the flare up I had typical after being on the mino for a while? Or did the declining prednisone cause it?
Hiya Caroline,
Really glad you found us, too…just sorry you had to seek us out. 😉
Just reading your story, it really took me back to how my RA began, too. I had sudden, swift onset, very severe RA that began in the Fall of 2006. I went from being really well and working out in bootcamp to suddenly being so unwell, in agonizing all-over joint and muscle pain, causing me to be bedridden for months. In my case, I live in Connecticut (had just visited Cape Cod for Labor Day weekend) and it was all triggered by Lyme disease, which also caused me to have heart rhythm irregularities. My standard Lyme tests all came back equivocal (in spite of two glaring bulls-eye rashes), so my PCP refused treatment saying I would have tested positive if it was Lyme. Had I had appropriate anti-microbials right at the beginning, my current Lyme doc thinks I may well have averted all-out RA. I try not to think about that now, as it’s pointless and takes me to a sad place of regret, but I just didn’t realize at the time how horrendous Lyme and its hitch-hiking coinfection friends can be for some folk. All the literature out there says it’s hard to get and easy to diagnose and treat….unfortunately, much to my chagrin, I discovered that this is propaganda and pure and simple misinformation. People can and do get very sick from Lyme and it loves major organs, including the heart, as well as the nervous system, joints and connective tissues….and, in those pre-disposed or just getting a particularly virulent strain, it can also trigger and perpetuate autoimmunity, or what looks like “self-attack,” but is just chronic, hidden infections in our own tissues. Standard testing also misses 50% of cases, as Lyme is so immune-suppressive that it can quite literally hide from immune function and the antibodies needed for testing just aren’t being produced. Sadly, some of the sickest Lyme patients get missed entirely due to this.
Purely and simply due to the similarity of your story, I feel compelled to ask if there might be any chance you have Lyme? Most people never see the tick, which can be as small as a pepper grind and only about 50% of folk get a bulls-eye. So, there’s lots of people out there with Lyme who may never make the connection. Just by virtue of the fact, however, that you live in Vermont, I felt it might be worth asking. In retrospect, now I look back, I had probably been infected after my first tick bite, some 12 years before, as I had odd symptoms that would wax and wane, like hot flashes, periods of crashing fatigue, muscle twitches, migraines, heart palps and PVCs, pin-pricking sensations, etc. These never came together, so I never put the whole picture together until the emerging bulls-eyes, which may have been “late-disseminated” bulls-eyes. Lyme can remain latent for decades until some precipitating stressful event compromises immune function, like an accident, shock, prolonged stress, surgery or some other unrelated illness, comes along. In my case, it was the passing of my mother very suddenly at that time.
Lymies tend not to be able to tolerate methotrexate or other DMARDs. This is because Lyme LOVES immune suppression, so the underlying infections just proliferate when immune function is switched off. Interestingly, plaquenil is a common Lyme treatment, both for the coinfection babesiosis (which is malaria-like) and also thought by some to help with the “cystic” form of Lyme – I’m currently taking it as part of my combination Lyme protocols. So, the mix of mino and plaquenil is actually a good one, if Lyme is a question.
Yes, to both questions! The mino can cause early worsening to occur in the shape of a herxheimer reaction, as Judy kindly shared above. Tapering from prednisone will also cause rebound in terms of immune function switching back on.
The tetracyclines actually require a functioning immune system to work for their anti-microbial effects. This is because they are “bacteriostatic,” which means they only disable bugs, by entering the pathogen and intefering with certain enzymatic processes the bug requires for growth and reproduction. Here is a Wiki link that briefly describes this, but it’s also explained in the Scammell book, if you have a copy, also mentioned above by Judy.
http://en.wikipedia.org/wiki/Bacteriostatic
Once the mino disables the bugs, the immune system then goes in for the kill and to clean up the bacterial debris. Unfortunately, when prednisone is used in high doses, it switches immune function off, so when it is stopped and gradually comes back to life again, not only will one experience a rebound effect, but also more herxing, as the immune system begins to recognize those bugs again and go after them. So, in effect, the type of flaring you’re describing could be due to both things…rebound and herxing.
Unfortunately, prednisone, while being a “miracle” drug for stopping inflam in its tracks and providing almost overnight relief, it’s actually one of the most contraindicated drugs one can use for Lyme. It can be life-saving in some acute instances, of course, but it’s a dual-edged sword…providing swift, short-term relief for payback in drug rebound when it’s withdrawn. 🙁 It’s longterm use effects are also not good – causing cataracts, bone loss, diabetes, skin thinning and poor wound healing, stomach ulcer bleed-outs, etc. So, it really should only be used short-term in acute emergency situations and in small doses, such as Brown would have used, short-term, to help a person get through a herx or flare.
AP really is a longterm therapy, so there are no overnight cures. If you get a chance, try to watch the video at the top of this forum. It’s a bit dated now, but Brown shows the bone scans of an RA patient he was treating over the course of three years. He often re-iterated that it could take 3 to 5 years for RAers to reach remission on the therapy and much depends upon disease duration, severity and healing that might need to take place from damage done to immune function from the more conventionally-used drugs. This, bearing in mind, that Brown often saw patients when they’d failed all other treatments and came to him as a last-stop option. So, very often his patients were quite toxic from previous drugs they’d been using and had caused quite serious health issues due to side-effects.
Caroline, hope something above might be of help to you in your researches to find wellness again. Of course, I don’t know if you may or may not have Lyme, but just felt it was worth mentioning in light of some of the things you described. If it’s something you’d like to check into, we can share links with you to have more sensitive Lyme testing run (if standard tests were negative) and also a list of Lyme Literate MDs (LLMDs). If Lyme definitely isn’t in question for you and you’d just like a list of AP providers, if you’d like to travel for the IV clindamycin series (to boost the therapy), then we can provide this list, too.
Hi Caroline,
Welcome to this great board, and so happy you have found us… 🙂
I have to admit, when reading your history of heart problems along with sudden-onset RA, my first thought was lyme too. I have lyme and babesia, and was never bitten by a tick, and never had a bullseye rash. I was in complete disbelief that it could be lyme, but thanks to Maz and others nudging me, pursued treatment and am now much improved.
The first time I experienced a really bad herx, I had a marked drop in blood pressure, a rash on my legs, and flu-like symptoms. I also went to the doctor and had blood-work done which corroborated a herx. This helped me understand what I was experiencing:
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.nancy
Thank you all so much. I’ve ordered The New Arthritis Breakthrough and am looking forward to reading and learning more.
Yes I checked out the possibility of Lyme because I did live in CT years ago and have always been aware of tick disease. But it appears I tested negative, but will again discuss with the rheumatologist. She is open to working with me and AP – she also agrees I should be off prednisone. Initially I was at 20 mg, then 10, then 7.5 and now 5 mg a day. I see her next week and am going to ask to stop totally.
Just had lymph nodes removed last week due to unexpected growth and they proved to just be RA reactive. If I’ve experienced the Herx reaction then I actually find that hopeful!
I think the most difficult aspect is my husband’s fears! That’s why I am so grateful for this forum and your willingness to share. Again, thank you and I will share any changes and progress.
How common is it to have RA and REALLY have Lyme? I mean… I’ve never had any symptoms that aren’t strictly joint-related, but I live in an area where we get bit by ticks a ridiculously huge handful of times each year. I’ve not been tested for Lymes because it is really expensive, but I’m wondering if I should anyway. Are the chances as huge as sometimes they seem to be? Or is it pretty slim if I’ve never had the rash, flu-like symptoms, or anything else and only my joints hurt?
@dixiegirl wrote:
How common is it to have RA and REALLY have Lyme? I mean… I’ve never had any symptoms that aren’t strictly joint-related, but I live in an area where we get bit by ticks a ridiculously huge handful of times each year. I’ve not been tested for Lymes because it is really expensive, but I’m wondering if I should anyway. Are the chances as huge as sometimes they seem to be? Or is it pretty slim if I’ve never had the rash, flu-like symptoms, or anything else and only my joints hurt?
Hi Dixiegirl,
Yes, if a person has had past tick exposures, especially multiple bites, it’s just smart to get tested for Lyme. Not all ticks carry Lyme, but an increasing number in every state of the US do carry it and other tickborne infections, which if left untreated, can leave a person unwell and thinking AP isn’t working. The reason it’s important to figure this out is because Lyme and tickborne coinfection treatments vary significantly from Dr. Brown’s low dose AP in both dose and combinations used.
Lyme & ‘friends’ affects everyone differently. One might get bitten by an infected ticks years, sometimes decades, ago, might have a passing summer flu that doesn’t amount to much and then, down the road, some precipitating event (illness, injury, accident, surgery, stress, etc), sets it all off. Some people only get joint pain, some people only get neuro symptoms, some people only get chronic fatigue or fibromyalgia…it really is unique to each person. Lyme docs feel it probably has a lot to do with the strain of Lyme that is passed, as there are over 100 different strains of borreliosis in the US and 300 worldwide, some more virulent than others.
Honestly, if a person has had tick bites and has symptoms suggestive of Lyme (even just joint pain), then it’s worth checking it out. 🙂
I was referred to your website via David Brownstein’s book, overcoming arthritis. I have been experiencing increased RA symptoms since 2010 and now am testing positive. Early on, I tested positive for Sjogren’s syndrome without the typical drying symptoms.
My clinical progression began with seeing a ENT for constant cold & flu symptoms. He advised I use air purifiers in my place of business & home. That made a difference, however I started experiencing arthritic pain, numbness & weakness in my hands. Now I have these problems bilaterally in all joints excluding my hip & no issues with my spine. Walking is difficult. I was an avid tennis player & danced a lot!
I am taking 1500 mg Sulfasalazene twice a day or 6 tabs each day. I still require Motrin q 6 – 8 hrs and am almost tapered off Prednisone. Recent lab work revealed Vit D deficiency and am subsequently taking 50,000 IU D twice a week for 8 weeks. This week I resumed taking Mg taurate, B complex vitamins, zinc, selenium supplements and noticed improvement quickly.
I live in the East Haven, CT next to New Haven. Can you recommend a medical professional who can take me through the appropriate testing for Mycoplasma infection and Lyme disease? I’ve tested negative for both but have read that the typical tests can show a false negative or are not adequate in picking up the strain.
My present rheumatologist is in New Haven, CT. He listens well, but is not yet familiar with the info regarding Mycoplasma and RA. Would love to find someone local who can ascertain if I have Lyme dis. and offer AP therapy as needed.
Thanks for taking the time to offer any assistance or referrals you can give. 🙂
@Maz wrote:
@dixiegirl wrote:
How common is it to have RA and REALLY have Lyme? I mean… I’ve never had any symptoms that aren’t strictly joint-related, but I live in an area where we get bit by ticks a ridiculously huge handful of times each year. I’ve not been tested for Lymes because it is really expensive, but I’m wondering if I should anyway. Are the chances as huge as sometimes they seem to be? Or is it pretty slim if I’ve never had the rash, flu-like symptoms, or anything else and only my joints hurt?
Hi Dixiegirl,
Yes, if a person has had past tick exposures, especially multiple bites, it’s just smart to get tested for Lyme. Not all ticks carry Lyme, but an increasing number in every state of the US do carry it and other tickborne infections, which if left untreated, can leave a person unwell and thinking AP isn’t working. The reason it’s important to figure this out is because Lyme and tickborne coinfection treatments vary significantly from Dr. Brown’s low dose AP in both dose and combinations used.
Lyme & ‘friends’ affects everyone differently. One might get bitten by an infected ticks years, sometimes decades, ago, might have a passing summer flu that doesn’t amount to much and then, down the road, some precipitating event (illness, injury, accident, surgery, stress, etc), sets it all off. Some people only get joint pain, some people only get neuro symptoms, some people only get chronic fatigue or fibromyalgia…it really is unique to each person. Lyme docs feel it probably has a lot to do with the strain of Lyme that is passed, as there are over 100 different strains of borreliosis in the US and 300 worldwide, some more virulent than others.
Honestly, if a person has had tick bites and has symptoms suggestive of Lyme (even just joint pain), then it’s worth checking it out. 🙂
@gratefulgirl wrote:
…I live in the East Haven, CT next to New Haven. Can you recommend a medical professional who can take me through the appropriate testing for Mycoplasma infection and Lyme disease?
Hi Gratefulgirl,
Just bumping your post up. Welcome to RBF!
It would have been better if you had started your own thread.
Hopefully it will be noticed this time around and you will receive some replies.
Warm wishes, Krys@Krys wrote:
@gratefulgirl wrote:
…I live in the East Haven, CT next to New Haven. Can you recommend a medical professional who can take me through the appropriate testing for Mycoplasma infection and Lyme disease?
Hi Gratefulgirl,
Just bumping your post up. Welcome to RBF!
It would have been better if you had started your own thread.
Hopefully it will be noticed this time around and you will receive some replies.
Warm wishes, KrysKrys, thanks for bumping up GratefulGirl’s post as it might have been missed. I’m pretty sure, though, that I have spoken on the phone to this lady and that we have communicated via email. 😕 If not and you still need a doc, GratefulGirl, just let me know and I’d be happy to send you a listing and speak by phone, as we are practically neighbors. Thanks again, Krys!!
Hi Girls;
here is a neat chart that might help you determine whatever you may have.One thing Maz did not mention is that Lyme can come from any biting insect.If anyone ever tells you that it does not exist in your area,DON”T BELIEVE THEM.My sister lives in the Arctic(Yukon) and has it.Scientists in Canada are pretty sure it comes with migrating birds who in turn get bitten by flies or mosquitoes and pass it on to humans.@Lynne G./SD wrote:
Astounding!!! Thank you, Lynne. When one clicks on the links to further symptoms, things I’ve never mentioned and never ever seen mentioned, very weird symptoms, are all there. Every single one of them. What a good feeling to know that I did not imagine them, that they were not all in my head! 😆
Krys@Lynne G./SD wrote:
here is a neat chart that might help you determine whatever you may have.
Hi Lynne–
Thanks for posting this. What a wealth of information! I’ve already forwarded this on to my doctor and a neighbor who also has Lyme.
Take care,
TrudiLyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
I’ll third that! Great symptom chart link, Lynne. Thanks for posting – I’m bookmarking it for future reference. 😀
You’re right, I forgot to mention other biting insects can transmit lots of infections, too. Dr. F in AZ, who is a big supporter of RBF and AP doc, is working on research of a protozoan organism, called protomyxzoa rheumatica, which he believes may be at the root of all chronic inflammatory diseases. I believe this one can be passed by mosquitoes and other insect vectors. Although I haven’t seen a good deal of research on which bugs can transmit which disease (incubation periods and speed of transmission during bite), the probability is probably high that all blood-sucking bugs have this potential. Babesiosis may be the worst contender….e.g. we’ve known for a long time that mosquitoes transmit malaria and the tsetse fly transmits trypanosomiasis (African sleeping sickness).
Krys & Maz, thank you both. I just found your replies. Maz, you have been such a help & I’m grateful we are practically neighbors. Would love to meet you in person & give you the biggest hug! I have been spreading the word about AP for people with autoimmune disorders. I will be sharing my history at some point on this site.
I’ve bumped up to Minocycline 100 mg QOD this week. Have felt herxing from the start in various joints with relief in same joints after a couple of episodes. No more brain fog & logging improvement on all joints. It’s only been three weeks and there is definite improvement! I’m keeping a log, too, so I can share my progress in the history as accurately as possible.
Blessings angels! Kariann
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