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Hi everyone,
This is my first time posting. I have followed the forum off and on over the last 2 years and we have been helped many times from it. Hoping you guys can help guide me through this…. My husband was diagnosed 2 years ago with RA. It took many months of doctoring and joint swellings/pain to reach this conclusion. He had a positive anti-CCP, but his symptoms often times presented like gout and moved around his body a lot. Anyway, he started minocycline therapy 2 years ago taking it M-W-F 100 mg twice daily. He was also on meloxicam 15 mg daily at the start of his therapy. It didn’t take long before he began to notice improvement. He did herx in the beginning, but no more joint swelling after the start of the mino and by 6 months into the therapy he did not have any more pain. Great success with the antibiotic therapy! He was doing good up until August when he developed a double pneumonia and was in the hospital for 9 days. They treated him for bacterial and also fungal pneumonia. He did have a bronchoscopy which grew candida yeast. He was treated with fluconazole for 5 weeks. He followed up with pulmonologist November 6th and his CT scan was normal. She gave him a pneumonia vaccine and said she didn’t need to see him back. The week of Thanksgiving his came down with body aches and a low-grade fever for a couple days and then he got better. I was also sick at the time, so I didn’t think too much of it. He was well for about 4-5 days and came down with the same thing again, body aches (mainly lower legs) and fever, and he has had these symptoms for 2 weeks now. We have had him the doctor 3 times worried his pneumonia was back and his scan have been clear. They have checked him for influenza twice and it was negative both times. His fevers are going over 102 degrees when he gets them. Last Friday they did blood cultures and were negative. His CRP has been elevated, started out at 11.6 and has come down to 9.3 today. His white count is normal. The only other lab findings are decreased hemoglobin, hematocrit, and RBCs. He seen his rheumatologist yesterday and she thinks it is viral illness. She thinks he doesn’t have enough symptoms to be Drug induced lupus and she didn’t think it was a RA flare. He is seeing an infection disease doctor tomorrow. I keep questioning DILE, but nobody seems to think much into that. IF anyone has had similar symptoms and it turned out to be that, could you please share? Also, I am wondering if the pneumonia vaccine has something to do with this?RA diagnosis 2015 - positive anti-CCP. Currently Clarithromycin 500 mg daily; Turmeric supplement; probiotic; fish oil; vitamin D3; MSM. Minocycline therapy from 2015-2017 until developing sensitivities. Gluten free and dairy free diet. Severe dairy intolerance. Tested positive for M. pneumoniae igG
Hi Lee,
It’s nice to ‘meet’ you and hope someone will post some info for you to help in your husband’s situation, bearing in mind none of us are medical professionals. I have a few questions for you, if you don’t mind?
Does your hubby take quality probiotics in good amounts, spaced at least a couple hours away from his antibiotic doses? Not seeing this in your signature line and, when on long-term antibiotics, probiotics aren’t an option, but a necessity to keep the gut healthy and prevent candida overgrowth. He may be, but just thought to ask. 😉
Did the hospital tell him which type of bacterial microbe caused his pneumonia in addition to the fungal type?
The blood counts might indicate infection and possibly anemia. Did the doc run a full iron panel to include, ferritin, serum iron, % saturation and TIBC? If not, might be a good idea to have these checked. Also, to have B12 checked. When visiting the infectious diseases doc, you might think about asking for tests for the tick-borne infection babesiosis, a protozoan piroplasm, similar to malaria, which can cause fevers and, because it parasitizes red blood cells, can also lead to anemia. If one tick-borne infection is present, then quite often others will be as well (e.g. Lyme, bartonella, erhlichiosis, anaplasmosis, mycoplasma, rocky mtn spotted fever, etc.). Quite often, folks don’t even know they were infected until a long time after, when run down and immunity is compromised.
Regarding the pneumonia vaccine, the timing is kind of synchronous (and when it quacks like a duck and looks like one, quite often it’s a duck), but as “correlation doesn’t imply causation,” it would be hard for anyone to say definitively if this has caused the relapse or not. It might be a perfect storm type of situation with all sorts of co-factors converging at once. This said, there is compelling research that ties some vaccines with elevations in rheumatic labs or triggering autoimmunity (the purpose, after all, of a vaccine is to promote immunity by giving the bug antigen – was it a live or dead vaccine?). If a patient is on immune-suppressant therapy, then it’s wise to have vaccines, but when on AP, the jury is out, because it can have some protective effects against colds and flu (as Brown talked about in the book). The following are a couple of studies on pubmed.com indicating adverse events of some vaccines in rheumatics, but you should find more by running searches:
Most rheumatics also find they have low Vit D, which increases the risks for infection, osteoporosis, autoimmunity, cancers, etc., so this is an important lab to have checked at intervals and to supplement with Vit D3 gelcaps (taken with fat for absorption) if this number is low. Ideally Vit D should be between 60-80 25-OH ng.mL.
It may be that this sequence of events has led to the emergence of some latent infection, like strep, a tick-borne infection, etc., so would be good to have the ID doc run a thorough panel, including various funguses and molds. Having a fungal lung infection doesn’t bode well for rheumatics who might be taking a biologic drug (e.g., humira or Enbrel) and these drugs are contraindicated in these instances on the warning label. If your hubby uses a C-Pap machine for sleeping, then this can be a route of entry for molds and fungal overgrowth, too.
Once he’s had a really thorough work-up for infections, you may have some great pointers in terms of how to modify his AP. For instance, it might be wise to increase his pulsed minocycline doses to daily for a while, and/or to add a secondary broad spectrum macrolide, like biaxin or azithromycin, both of which would help to control lung issues, and maybe even given a boost with a round of IV clindamycin. Dr. Brown used a 5 day series of IV clindamycin (details in the Pulsed Protocol packet in the Resources section of this site) to clear the way of other extant microbes that might impede progress on oral minocycline.
Finally, did the rheumy run any labs to check for drug-induced lupus? If not, these would be good to have run to rule it out as a potential, if nothing else. Knowing one has a predisposition to DIL is pretty important, because it is in a person’s genetics how they metabolize certain drugs and this can be quite important as many classes of drugs can cause it (e.g. anti-thyroid meds, beta-blockers, some antibiotics, etc). DIL is more about how a person metabolizes certain drugs (called “slow acetylation”) rather than the drug itself. Being unable to break down some drugs that can potentially cause this, leads to toxicity that mimics lupus, but goes away once the drug is stopped (labs, like ANA can take a couple years to normalize).
Hopefully, something here will provide some ideas to research and check with your husband’s doctors, Lee. Is he seeing an AP doc or getting his minocycline script from a rheumatologist?
Hi Maz,
Thanks for your reply. Here are answers to your questions- Yes, he is on a Metagenic probiotic. Not sure if he is taking the minocycline and probiotic at different times. Nothing bacterial grew out in his cultures during his hospital stay. The infection disease doctor we were working with at the time said that might be the case (no growth) due to the fact that he had been on the minocycline and other antibiotics before his admission to hospital. The fungal component was candida yeast and was obtained through bronchial washings during bronchoscopy. He just had his vitamin D checked and it was on the low end of normal at 32, so he is now taking 5,000 IU daily. I think he has been checked for Lyme disease, but that is it. I will mention a tick borne disease panel tomorrow and also ask about a vitamin B12 level – not sure if has had that checked or not. None of his doctor have ran any further workup on the anemia. Before August when he developed the pneumonia, his blood counts had always been normal and had returned back to normal after his hospitalization (They were checked in October). I will mention that to the Infectious doctor tomorrow also. What labs would the doctor need to run to check for DIL? No one has checked into that yet. He is getting his minocycline script from a rheumatologist. She was apprehensive to prescribe it, but she did agree, and I think has been impressed with the results; he is her only patient on it! We did consult with Dr. S in Iowa and he suggested the pulse dosing. I am thinking we need to start seeing an AP doctor. We live in North Dakota. Do we have any close options?RA diagnosis 2015 - positive anti-CCP. Currently Clarithromycin 500 mg daily; Turmeric supplement; probiotic; fish oil; vitamin D3; MSM. Minocycline therapy from 2015-2017 until developing sensitivities. Gluten free and dairy free diet. Severe dairy intolerance. Tested positive for M. pneumoniae igG
Currently, there are no AP doc in North Dakota, but there are some in surrounding states, if travel is an option, or you might consider going to see Dr. F., who is a rheumy in southern Cali on the “most experienced” list. Dr. S., in Iowa, is near retirement, but he is still taking one new patient per week and seeing established patients under his care. Finding out if tick-borne infections may be in your hubby’s mix could change this picture, though, as he’d need to see a Lyme Literate MD (LLMD) who is experienced in treating these types of infections. Some folks will also build teams of docs. The standard Lyme tests are notoriously inadequate, so sometimes testing for another tick-borne infection can raise suspicion of Lyme even in light of negative standard tests.
The labs to check for DILE are: ANA, anti-histone ABs, double-stranded anti-DNA and single-stranded anti-DNA. The double-stranded can help to rule out real lupus if negative. Rheumies will often run a bunch of baseline tests at the outset, but don’t re-check these as they aren’t expected to improve (whereas on AP, they often do). It’s the combo of these 4 tests that can help to rule DIL in or out, as ANA may be positive for autoimmunity, but if negative prior, can point to DIL, if single-stranded anti-DNA and anti-histone ABs are positive (with double-stranded anti-DNA negative). DIL manifests in a number of ways for different folks, so it can be tough for a doc to make a clinical judgment without running the labs to confirm or rule it out, as some lupus symptoms can look like RA, too. In any case, if it’s concerning you, then just checking can’t hurt and may help to put your minds at rest.
Would suggest looking at the RA Research section if you haven’t had a chance yet, because some infections have been correlated with elevations in anti-CCP (e.g. Proteus mirabilis, Lyme, and P. gingivalis). Others may correlate as well, but these are just a few of the ones that may lead to citrullinated protein creation in the scientific literature. Interestingly, when I went on a combo of a long-acting penicillin (Moxatag) and Diflucan for 10 months, my anti-CCP normalized during that time – came down by 40 points, regular as clockwork, every month. So, sometimes, there is a need to mix up the antibiotics in certain scenarios (in my case, Lyme and British teeth!).
As Vit D is low, then re-checking this at 6-monthly intervals is a good idea. I also take 5000ius of liposomal Vit D3, but at 6 months had to lower the dose, as my reading went from 31 (borderline low) to 89. So, I only take this dose 5 days a week now, as Vit D hypervitaminosis can come with its own set of symptoms.
Of course, this might just be a flare and hubby might be in a recuperative phase, post-pneumonia. Shame they couldn’t culture which bacteria he had (strep? mycoplasma?). Low dose AP doesn’t prevent flares like immune-suppressants will do, but over time these should decrease in frequency, duration and intensity. So many things can trigger a flare – poor diet, stress, hormone shifts, a passing acute infection, accident, surgery, etc. Maybe the ID doc will run some indirect tests to look for antibodies for different bacterial pneumonia types, as well as PCR for mycoplasmas? Just a thought…
Just a quick reminder —not only is probiotic very important –ENOUGH probiotic is extremely important —-A person on antibiotic therapy needs a much higher dose than the label —For example I take 7-8 capsules daily of probiotic –when I have a different ailment that requires a compatible antibiotic along with minocycline -I up it to 10 capsules daily –I take them all at once in afternoon –never an issue –this has been my routine for 18 years now !!!!And its always been PB8 brand —
I forgot to mention that he had been on 2 rounds of steroids before the pneumonia in August due to a rash in his lower legs around his knees, also on his forearms. We though it was due to detergent or due to plants since he had been in heavy grass/brush patches fixing fence. Anyway, wonder if that steroid therapy just set up the perfect storm and he was better and now we’re dealing with it due to pneumonia shot after effects now. It was the pneumovax 23 which I believe is not live. Going to infectious doc this morning. Going to bring up tick diseases as he has had lots of tick bites over the years. Think we will up his probiotics, too. Thanks maz and Richie!
RA diagnosis 2015 - positive anti-CCP. Currently Clarithromycin 500 mg daily; Turmeric supplement; probiotic; fish oil; vitamin D3; MSM. Minocycline therapy from 2015-2017 until developing sensitivities. Gluten free and dairy free diet. Severe dairy intolerance. Tested positive for M. pneumoniae igG
You could be right, Lee, on both counts. Re: the vaccine, even dead vaccines contain bug proteins that are intended to ramp up immunity against a particular bug. With a struggling immune system, it could be it was a component of inducing a flare. Hopefully, it will quiet down. There will be a new blog published next week on alternative pain relievers by Katherine Poehlmann PhD, so it’s worth subscribing to the blog to get a notification to check it out, as there could be something helpful there for your husband to help quell his inflammation. Inflammation produces oxidation and its the free radicals released that contribute to tissue damage. This is why many people with inflammatory arthritides will use antioxidative strategies to help lower inflammation – worth researching, if you have an interest. Hope all goes well at the ID doc appt today. Let us know how you get on when you get a chance.
How long after your husband had had pneumonia a doctor gave him a pneumonia vaccine?
He was also on meloxicam 15 mg daily at the start of his therapy.
How long was he on Meloxican?
Thank you.RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygousHe had the pneumonia the end of August and his scans were normal on November 6th, so she gave it to him that day. At the start of his therapy he was on the meloxicam for 1 year before he weaned off. Once he started AP therapy his CRP normalized and has been normal up until the pneumonia. His anti-ccp was 197 when he was first diagnosed and it was rechecked when he was hospitalized in August and it was down to 90, so improved.
Seen infectious disease doc yesterday and she is checking him for DIL, cytomegalovirus, mononucleosis, parvovirus B19, SED rate, viral respiratory panel by PCR, and she also wanted to do an abdominal ultrasound. She also said minocycline can cause a drug-induced meningitis, but he is not having any neck symptoms or severe headaches, so maybe she is ruling that out.
Husband seems to feel better on the mornings after the days he does not take the minocycline. If this happens again tomorrow morning when he is due for his friday dose, we might skip it and see if he keeps feeling better.
RA diagnosis 2015 - positive anti-CCP. Currently Clarithromycin 500 mg daily; Turmeric supplement; probiotic; fish oil; vitamin D3; MSM. Minocycline therapy from 2015-2017 until developing sensitivities. Gluten free and dairy free diet. Severe dairy intolerance. Tested positive for M. pneumoniae igG
He had the pneumonia the end of August and his scans were normal on November 6th, so she gave it to him that day. At the start of his therapy he was on the meloxicam for 1 year before he weaned off. Once he started AP therapy his CRP normalized and has been normal up until the pneumonia. His anti-ccp was 197 when he was first diagnosed and it was rechecked when he was hospitalized in August and it was down to 90, so improved.
Lee, the improvements in your husband’s labs are testimony to his AP working. For his anti-CCP to have come down by 107 points is pretty amazing during that short time-frame!
Seen infectious disease doc yesterday and she is checking him for DIL, cytomegalovirus, mononucleosis, parvovirus B19, SED rate, viral respiratory panel by PCR, and she also wanted to do an abdominal ultrasound. She also said minocycline can cause a drug-induced meningitis, but he is not having any neck symptoms or severe headaches, so maybe she is ruling that out.
Was the ID doc unwilling to test for anything but viruses? Nothing wrong in testing for viruses, but considering his rheumatic condition, blood counts, and recent double-pneumonia, sure would have been helpful to look a little outside the box at potential bacterial causes. (e.g. Streptococcus pneumoniae, mycoplasma pneumoniae, chlamydia pneumoniae, babesiosis, and perhaps others).
Husband seems to feel better on the mornings after the days he does not take the minocycline. If this happens again tomorrow morning when he is due for his friday dose, we might skip it and see if he keeps feeling better.
Yes, feeling better on off-AP days is a common pattern when pulse-dosing and not abnormal. In fact, the purpose of pulse dosing is to give the body a rest between doses to allow for normal protein synthesis.
It will be helpful to have had the DIL tests run to rule it in/out. Either way, it will provide good info to move forward and to help making decision about whether or not to work with an experienced AP doc.
I know they had tested him for several bacterial causes back in August and the infectious disease doctor had reviewed his chart when he was hospitalized, so I need to find out what was all tested back then.Tthe feeling better thing on the off days or morning of next dose is just something we have noticed in the last 2 weeks when he has been ill. What do you guys think we should do, up the dose or quit taking it if he feels better again in the morning? So hard trying the figure it out!! Really frustrated with mainstream medical, too; just don’t seem to want to get out of the box. Infectious doctor didn’t really seam concerned about the tick borne illness yesterday since he hasn’t been bitten recently!! Just check everything is my thought process. Will move on if we don’t get any answers. He is supposed to see the infectious doctor again next week.
RA diagnosis 2015 - positive anti-CCP. Currently Clarithromycin 500 mg daily; Turmeric supplement; probiotic; fish oil; vitamin D3; MSM. Minocycline therapy from 2015-2017 until developing sensitivities. Gluten free and dairy free diet. Severe dairy intolerance. Tested positive for M. pneumoniae igG
Sadly, your hubby’s experience with ID docs isn’t unusual. There is a hotbed of controversy going on between two medical societies – the Infectious Diseases Society of America (IDSA) and the International Lyme & Associated Diseases Society (www.ILADs.org) – and both have developed their own set of diagnostic and treatment guidelines for Lyme and associated tickborne coinfections. Unfortunately, patients are bearing the brunt of this conflict. It’s worth browsing the ILADs website to learn more about this situation, or watching the movie documentary, “Under Our Skin.”
Watch for free on AmazonPrine: Under Our Skin
What some folks will do…and what Dr. Brown recommended during a flare, is to stop the antibiotic for a few days to a week to allow the body to wash out toxins and then to resume at the same dose (or if on daily dosing, a smaller dose). This transcribed info is provided in a talk he gave and is now located in the Resources section (note the text in bold):
Guidelines For Infectious Hypersensitivity Approach To The Treatment Of Rheumatoid Arthritis
None of us can really advise you what to do – just offer our experiences and help with resources. Quite often, though, when hiccups arise like this, it can be a turning point for some to seek out an experienced AP Provider or Lyme Literate MD (if tickborne illness is suspected).
Thanks for your help. It might be time to find an AP doctor. We do like dr. S, but know he is close to retirement. Is there a page with a list of AP docs so we can see what are options are?
RA diagnosis 2015 - positive anti-CCP. Currently Clarithromycin 500 mg daily; Turmeric supplement; probiotic; fish oil; vitamin D3; MSM. Minocycline therapy from 2015-2017 until developing sensitivities. Gluten free and dairy free diet. Severe dairy intolerance. Tested positive for M. pneumoniae igG
Hi Lee,
Saw your email request go to the apdoclist email address just now. Unfortunately, there is a foundation policy not to hand out the full list for the US, but one of the AP doc responders will supply the most experienced doc list as there are none in North Dakota. There are a few AP docs is surrounding states and there is also a LLMD email address on the Contact page if you’d like me to send you these, too.
Hi Maz,
Yes, please send what you can for most experienced AP doctors in surrounding states. I will also submit a LLMD request. Thanks!RA diagnosis 2015 - positive anti-CCP. Currently Clarithromycin 500 mg daily; Turmeric supplement; probiotic; fish oil; vitamin D3; MSM. Minocycline therapy from 2015-2017 until developing sensitivities. Gluten free and dairy free diet. Severe dairy intolerance. Tested positive for M. pneumoniae igG
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