RA and minocycline

[Maz]

@keith_nufc1 wrote:

I have ankylosing spondilitis and I take 100mg of doxy twice per day. I have no herx and I have been doing this for about 7/8 weeks. I am doing much better.

I was surprised to see that tetracyclines shouldn’t be taken with mineral dense foods. I have 200g of spinach and 100g of sardines every morning about 20 minutes after my doxy! Could they have been effecting my progress?

I eat a no starch, no dairy and no sugar diet. Would avocado, flaxmeal , eggs and butter be a good alternative?

Hi Keith,

Nice to meet you and great to hear you’re feeling better so quickly! 🙂 Whenever you have a question, please know you’re most welcome to start your own thread. You may find you get more responses that way, as the subject headers tend to attract they eyes of those with some knowledge or question on the topic.

Ideally, it’s best to take tetras on an empty stomach with a good one or two hour window either side. That said, some folk can’t tolerate doxy on an empty stomach and need to eat something light. Yes, mineral-rich foods would, in that kind of instance, affect absorption and best to stick to something like gluten-free bread, crackers or apple sauce. It’s worthwhile checking the nutritional value of any foods that might be taken with a tetra class antibiotic….there are some good online resources for nutrition-checking.

The tetracyclines are highly chelative, meaning they bind to minerals like calcium, iron, magnesium and iron. So best to avoid any supps or foods containing these with a good couple hours window either side, as they will bind to the tetra in the gut and render them less effective. It’s hard to guage how much effectiveness is lost, percentage-wise, but if, say, one drank a full glass of milk with a dose or an iron supplement, then it might be expected that quite a bit of the value would be lost.

Some say it’s okay to take minocycline with food and that it was actually developed specifically for teens with acne in mind (in fact, it says this on the Triax brand Minocin site). Nevertheless, if one wants to ensure full effectiveness of any tetra, it’s better to take on an empty stomach with a full glass of water and, if the stomach rebels, then to keep food light and as mineral-free as poss.

Also, very important to not take tetras close to bedtime or to lie down right after the dose. The possibility of a stuck cap in the esophagus that hasn’t got quite down or reflux, can lead to severe esophageal burning, bad enough to warrant an ER visit. My daughter took doxy for her acne at college and, one night, went to bed right after swallowing her dose and woke in the night in terrible pain. She was unable to swallow food comfortably for a good two weeks.

You sound like you’ve really done some homework already, Keith, so am sure you will already be on a good probiotic, too. 😉

[keith_nufc1]

Thanks for such a fantastic and speedy response.

Sorry again for hijacking the thread.

Thanks so much.

Keith

[marinastarbucks]

The issue about lyme disease is really interesting. When all my symptoms started in 2007, I was tested for lyme by the western blot test but it came out negative. Is it possible to come out negative even if you are truly positive or by a different test? This would definitely explain a lot of things. Does it happen that people with lyme don’t find out they have lyme for several years? It is possible I could have been bitten b/c I used to run in sligo creek park in Maryland all the time where it was densely wooded, etc. And I know for sure I was bitten by ticks when I was a kid while visiting my grandparents in Arkansas.

So if I am just starting minocycline, and if i did have lyme, would that help the lyme symptoms. The problem is I am working right now working overseas and in the country I am in I don’t even think they have ticks so I doubt they do testing for lyme but I can check it out. Maybe I will look into getting retested.

thanks
Marina

[Kim]

@marinastarbucks wrote:

The issue about lyme disease is really interesting. When all my symptoms started in 2007, I was tested for lyme by the western blot test but it came out negative. Is it possible to come out negative even if you are truly positive or by a different test? This would definitely explain a lot of things. Does it happen that people with lyme don’t find out they have lyme for several years? It is possible I could have been bitten b/c I used to run in sligo creek park in Maryland all the time where it was densely wooded, etc. And I know for sure I was bitten by ticks when I was a kid while visiting my grandparents in Arkansas.

So if I am just starting minocycline, and if i did have lyme, would that help the lyme symptoms. The problem is I am working right now working overseas and in the country I am in I don’t even think they have ticks so I doubt they do testing for lyme but I can check it out. Maybe I will look into getting retested.

thanks
Marina

Hi Marina,

This link has some pretty good information on Lyme Disease http://www.envita.com/sections/disease/lyme/default.aspx

Lyme is everywhere, but especially on the east coast. Yes, it’s possible to be infected years earlier and have your immune sytstem do what it’s supposed to do and it’s not a problem, but then for whatever reason, usually some other infection or stressor(s), will tip the applecart and all hell breaks loose. When this happens people experience a multitude of systemic problems and it takes a very experienced LLMD (Lyme literate medical doctor) to sort through it all. Most Lyme testing is inadequate and will miss a large percentage of people which is why Lyme is mostly a clinical diagnosis. Igenex Labs is the lab with the most sensitive testing and tests for more bands so it is the preferred lab. You can order a test kit and they will send it to you, but you need a doctor’s signature to send back your sample (two vials of blood). You can call or email them and see about submitting a sample from overseas. If the “search” feature is working now you can look back at previous discussions on this topic.

The reason it is very important to know if Lyme is at the root of your problems is because the treatment is very different from AP, although many of the same antibiotics are used (mino/doxy being one of them). AP uses low-dose antibiotics, whereas Lyme uses high-dose abx. You can also get a lot of information on http://www.lymenet.org

Hope this helps, Marina. So many of us have learned that our Lyme infection came first and then induced our RA or Scleroderma. 🙁

Take care…..kim

[marinastarbucks]

thanks for all the info. I am going to try to get retested as soon as I get back to the States. I will check into it here, but I am in the middle east and I don’t think they have lyme here. anyway, i am wondering though, IF i did have lyme, which seems to realy really make sense, why would when I was on the mtx and enbrel before it help me with fatigue issues and help with movement? would it still help me even if I had lyme? I am on the mino now, but just curious about why the mtx and enbrel would help then if the root cause is lyme (if it is). thanks

[Maz]

@marinastarbucks wrote:

thanks for all the info. I am going to try to get retested as soon as I get back to the States. I will check into it here, but I am in the middle east and I don’t think they have lyme here. anyway, i am wondering though, IF i did have lyme, which seems to realy really make sense, why would when I was on the mtx and enbrel before it help me with fatigue issues and help with movement? would it still help me even if I had lyme? I am on the mino now, but just curious about why the mtx and enbrel would help then if the root cause is lyme (if it is). thanks

Marina, that’s a really good question and one that there really isn’t an answer for, but if one believes that these diseases are caused by infections, whatever the infection, then treating with immune-suppressive therapy is only going to mask these. There are over 100 strains of borreliosis in the US and over 300 worldwide, and each strain has different disease-causing potential, with some more virulent than others. An additional consideration is that usually the sickest people with Lyme are those who have been multiply coinfected and usually had multiple ticks bites, increasing the pathogen load. So, as Kim described, when immune function is healthy and strong, a person can hold Lyme at bay for years. They might have a passing summer flu-like illness and then it goes into a dormant latent stage that can be held there for decades. Also as Kim described, it can take a later stressor (illness, advancing age, accident, surgery, stress, shock, etc) and then all heck breaks lose. Or, a subsequent tick bite with more infections that add to the existing pathogen load and perhaps a more virulent strain that just becomes opportunistic in an already over-worked immune system. So, there’s lots of variables with all this.

The thing about the standard tests is that they only test for one strain of borreliosis and they don’t have all the original antibody bands in them anymore (antibodies that correlate to specific borrelia antigens)…add to this the fact that Lyme is highly pleomorphic (shape-shifting), with a cloaking system enabling it to change up its outer surface proteins as soon as it is alerted to antibody attack and that many chronic Lyme patients are so immune-suppressed by the infections that they can’t produce enough antibody to test…and you have a very poor standard two-tiered test for Lyme (ELISA and Western Blot) that is only about 50% specific. Most lab tests require at least a 95% specificity…hmmm…but not for Lyme. This is why so many people are being completely missed on these tests and why, as Kim said, that ultimately Lyme had to be a clinical diagnosis, based on presentation of symptoms, past tick exposures and testing…which if positive is a nice confirmation, but shouldn’t rule Lyme out if negative or equivocal. Some of the sickest Lyme patients have a really hard time testing positive for it and sometimes it can take years and years for enough antibody to be produced. All this said, there are some very significant antibody bands in the IGeneX test that can point to Lyme and are considered to be due to nothing else…e.g. Band 39…so even if the IGeneX western blot isn’t definitively positive, it can provide strong indication of infection for which a good LLMD would spot and treat.

If you’re interested in learning more about all this, there is a terrific book, called, Cure Unknown, by Pamela Weintraub, that really is the new Lyme bible. You can listen to this author speak about her family’s experience with Lyme at the recent Inst. of Medicine symposium on the State of the Science of Lyme Disease (which was boycotted by some Lyme advocacy groups for being too biased to the IDSA view). However, she attended and gave a very moving, compelling talk. Just scroll down the list of speakers to her name to click on that segment of the webcast (1.55pm on the first day):

http://www.tvworldwide.com/events/iom/101011/default.cfm?id=12856&type=flv&test=0&live=0

There has been research on the use of biologic drugs in mice that was done in Finland. The mice were infected with borreliosis, received IV ceftriaxone (aka rocephin) antibiotics, reverted to seronegativity with non-motile spirochetes, but then when the TNF-blocking med was given to them, they reverted to seropositivity and live spirochetes were found in serology. This is pretty amazing work, because the argument is that short courses of abx “cure” Lyme disease….this study proves it doesn’t and that spirochetes are able to hide (likely in cystic and bio-film forms) and then come out for a field day as soon as the immune system is down again. Worth the read:

http://www.columbia-lyme.org/research/keyarticles.html

Marina, saw your email come into the apdoctors@roadback.org email and will send you the LLMD lists for the states you requested tonight.

[marinastarbucks]

Well I have been on minocycline a month and a half now, 2x a day. I also have been on a gluten free/dairy free diet. My movement is currently ok with the minocycline, but I am concerned about energy levels/fatigue. The metho/enbrel really helped with fatigue, but at a great cost I know. I am also taking tons of vitamin d, vitamin b, pro biotic called primal defense, and colustrum. Any ideas? Thanks

Marina

[marinastarbucks]

@marinastarbucks wrote:

Well I have been on minocycline a month and a half now, 2x a day. I also have been on a gluten free/dairy free diet. My movement is currently ok with the minocycline, but I am concerned about energy levels/fatigue. The metho/enbrel really helped with fatigue, but at a great cost I know. I am also taking tons of vitamin d, vitamin b, pro biotic called primal defense, and colustrum. Any ideas? Thanks

Marina

[Maz]

@marinastarbucks wrote:

Well I have been on minocycline a month and a half now, 2x a day. I also have been on a gluten free/dairy free diet. My movement is currently ok with the minocycline, but I am concerned about energy levels/fatigue. The metho/enbrel really helped with fatigue, but at a great cost I know. I am also taking tons of vitamin d, vitamin b, pro biotic called primal defense, and colustrum. Any ideas? Thanks

Marina

Hi Marina,

If this helps, it took several months for my fatigue to begin lifting when I started abx therapy. Even now, when I change up my abx protocols, I get a good whack of the fatigue hit with herxing. The fatigue is a pretty normal part of the herxing process in the beginning, as the body is busy trying to detox. In your case, you stopped your other meds, so it’s possible there may also be some rebound going on. In the book, Brown talks a bit about the fatigue associated with rheumatic disease and how AP gradually begins to help it. Learning how to detox can also help with this (e.g. FIR sauna, drinking lots of fresh water, keeping bowels moving regularly, epsoms/peroxide baths, lemon/olive oil detox drink, good diet, etc).

One way to help the body through the fatigue is to make “green smoothies.” These were suggested by an APRN who is an AP doctor in CO who also wrote an article for the Summer eBulletin. If you read the article, you’ll find the link in it to the green smoothies. These smoothies are filled with fresh nutrients and, as the body doesn’t have to expend energy digesting the food, as it’s already blended, this may be another reason why these seem to help. I actually make mine with coconut milk, a tablespoon of virgin coconut oil (Swanson’s) and then 60% fresh fruit with 40% green veg (like kale or spinach).

https://www.roadback.org/EmailBlasts/ebulletin_summer10.html

Hope the above helps a bit and hopefully others will chime in with ideas to help you out. 🙂

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