Using Tetracyclines To Help Bring Immune System Under Control

[gf-soph]

Hi all

[ravenwoodglass]

I have never heard of this approach. A couple questions. Are you on any meds now or supplements? Have they been checked to be absolutely sure that they are gluten-free? Are you consuming dairy? If so stop for a bit and see if that helps. Do you eat items with Codex wheat starch? Some consider it safe for us but it's best to avoid it. What is you diet typically like? Are you eating mainly whole unprocessed foods? You should be. If you live with folks that consume gluten are you really carefull about CC, have your own toaster etc?

[Imanistj]

I would suggest waiting to see the immunologist and then try the tetracycline. My thinking is not to introduce anything new so the immunologist can evaluate you without the complication of an added med. You might also ask him if he feels trying tetracycline is reasonable. I know that many years ago tetracycline was a popular drug used in the treatment of acne. I don't know if it is still a drug of choice. This doctor has been good for you in the past and trusting her now might be a good idea. You might even tell her you want to wait until after the immunologist evaluates you--I'll bet she will agree. One more thing, if you do decide to try the med ask the doctor what the side effects are so you can let her know immediately if you experience any that might make her want you to stop taking it. Good luck--maybe someday we will all be taking tetracycline because of you!

[Gemini]

Ranting over, does anyone have any experience with this approach? I am cautious about introducing antibiotics to a stuffed up digestive system, but my dr assures me that it won

[gf-soph]

thanks for your comments

ravenwoodglass - all my supplements are definitely gluten-free, I have check this with pharmacists/companies along the way. I don't eat any wheat starch, and don't eat many processed foods currently. I am lucky to live with family who offered to take the gluten out of the kitchen (after about 9 months , i have my own toaster, teflon, chopping boards, and their gluten is stored away from the general kitchen. I'm doing everything I know how to avoid CC, and have learnt a lot over the last year. I have been off dairy for over a month at various points, and I haven't been able to detect any effects from it. I am keeping my mind open to other food problems though, will follow it up with the immunologist and dietician.

Imanistj - my thoughts have been pretty much what you are thinking, to wait so as not to complicate the immunologists assessment in case it does have an effect. There is a big part of me that is so sick of being sick I really want to start it, but I don't want to complicate the picture further. I know there have been some antibiotic sensitivities in my family, so I will be very wary about possible side effects. I suppose that is another good reason to wait until after i see the immunologist, so that I can get in a see my dr immediately if I suspect anything.

Gemini - I think the way that this approach uses the tetracycline is very different to using it as an antibiotic. Although the tetracycline is usually used as an antibiotic, this approach is using it to target a different system, in a different dose, so it won't have the same systemic effect. My dr said that there is no risk of upsetting the digestive system as the dose is too low to kill off any bacteria, good or bad. I know that my dr wouldn't suggest putting me on anything that would further disrupt my system, she has taken me off other medication (contraceptive pill) in the past to see if it would help.

Your point about resistance is a good one, and I have avoided using antibiotics as much as possible in the past as I am aware that overuse is a big problem. I will speak to her about it further to clarify whether this may be an issue. I agree that I probably have an underlying condition, but I have no idea what that is. I

[Sunshine-Lollipop]

Hello

I would personally advise against it. I took a form of tetracycline (minocycline) a number of years ago for a mild skin problem, and it completely wreaked havoc with my health. It actually triggered the symptoms of celiac for me for the first time.

It created extreme mental, emotional and physical reactions - even damaged my eyesight and stopped my period for almost a year. The doctors could NOT figure out what happened, and they kept claiming that it couldn't possibly have those side effects.

I noticed pretty quickly after the climax of these terrible symptoms that when I ate wheat the symptoms were like 10x worse. I cut out the wheat and it helped me to gain some semblance of normalcy, but I still suffer with multiple allergies and nutritional deficiencies, and it has been over four years now. I'm scared to try any herbal remedies or anything to even try to fix this because I was traumatized by that experience.

So if it were me I would never EVER touch that stuff again. I suspect that it threw off the balance of bacteria in my gut, and also removed important vitamins from my body (B2, B12, iron, etc). One of the key factors that need to be in place for Celiac to develop is an "unusually permeable intestinal tract." I think that may have been exactly what the antibiotics created in my case.

However, as with homeopathy - who knows, sometimes you need to "let like treat like."

Whatever you choose, I wish you full health! Please keep us updated.

Does anyone know enough about the theoretical side of this to shed any light? Anyone with good/bad experiences with low dose tetracycline? Any advice at all?

Thanks!

Sophie

[gfp]

I have tried an extremely strict elimination diet (under the supervision of a very experienced dietician), soy/fructose/legume/lactose/egg free diet after that, neither have been useful and my dietician discontinued them as they weren

[WW340]

Tetracyclines can be a great anti-inflammatory agent. I am currently on Doxycycline 100mg twice daily. I have been on this dose since May of this year.

It is not uncommon to use this medicine for inflammatory issues. I was put on it for an inflammatory condition of the eye. At the time, I was having lots of immune issues and inflammatory issues all over. It has not been determined for sure if I have Sjogrens or Rosacea of the eyes.

I was also having dental and gum issues over the past year. When I went back to the periodontist, he asked me if I was on some kind of anti-inflammatory medicine, as my gums were 100% better. He said that even if they later take me off the med for my eyes, I need to continue a low dose indefinitely for my gums.

Lovaza (high dose fish oil) is another medicine with anti-inflammatory properties which they started me on in August. I feel great since starting these meds. A lot of the rheumatologists are using this now for arthritis, fibromyalgia, etc.

My energy has taken a huge jump, and I just feel better in general. Initially, I thought the Doxycycline was irritating my stomach, but it turned out it was the flax seed oil. Once I stopped the flax seed oil, my stomach has been great. This was after having a huge increase in stomach problems during the flare up of my eyes. I had 4 specialists working with me at one time, trying to solve the combined problem.

[Gemini]

I would personally advise against it. I took a form of tetracycline (minocycline) a number of years ago for a mild skin problem, and it completely wreaked havoc with my health. It actually triggered the symptoms of celiac for me for the first time.

So if it were me I would never EVER touch that stuff again. I suspect that it threw off the balance of bacteria in my gut, and also removed important vitamins from my body (B2, B12, iron, etc). One of the key factors that need to be in place for Celiac to develop is an "unusually permeable intestinal tract." I think that may have been exactly what the antibiotics created in my case.

I also took minocycline for a very long time, on the advice of a clueless doctor who claimed no harm would come of it, and it really messed me up, long term.

The problem is, it can help other issues, short term, but if you are on antibiotics for an extended period of time, it will totally mess up your GI tract and cause leaky gut, not to mention a resistance to them in general. It's amazing that doctors are still practicing this type of medicine today, after what we know antibiotics will do to a healthy gut. It is irrelevant as far a dose is concerned because long term use will cause the same damage, like eating low levels of gluten and thinking it safe to do so. Tetracyclines are very broad spectrum antibiotics so do the most damage also, long term.

I am in no way resistant to using antibiotics, either, but have had lots of experience with this and I would not wish the side effects from overuse on anyone. It's a very bad idea to treat chronic inflammation this way. However, each to his own and you have to weigh the risks with the supposed benefits.

[gf-soph]

hi again

thanks for further comments - it's a complicated decision!

I am definitely leaning towards trying it, as I do really trust my dr, I know it's a low (non-antibiotic) dose, and i know she doesn't want me on it for a long time - she said a few weeks should be a test of whether it starts working. I have tried modifying my diet so much, things keep changing over time but not in a good way. I've been sick constantly for 2 1/2 years and gluten-free for over 1, I know that's a lot less than many people here, but it's enough for me!

gemini - i can totally see why you are cautious given your experience, I am astounded by how useless some drs are. I had a terrible one before my current dr, kept coming back each month with crashing (and potentially damaging) low B12 and he never did anything but inject me and forget me! I know that the dr won't leave me on the tetracycline for a long time, neither would I stay on it for ages.

WW340 - it's good to know it is being used in this way in other people - I couldn't find anything on this area of it's use. My dr has consistently been looking for the key to the whole problem, and clearly sees inflammation as a possibility. I do too, as I can see how it fits as a problem for me.

gfp - i was on the diet for about a month when I went back to see the dietician as I developed what looks like an allergy to chicken - getting it tested properly soon. She looked at my food and symptom diary and took me off it as I was getting worse, so clearly not the right approach. I have been cutting more and more things out of my diet over the last year, it is getting to the point where i really can't manage it so I am really looking for a solution.

Sunshine_Lollipop - i'm sorry to hear it was so awful for you. However I already have all those problems, caused by my gluten intolerance that was triggered by a virus. I know the dr is looking at a low dose and for a short time, and I took a similar type of antibiotic many years ago with no ill-effects, so i'm careful but not super apprehensive about its effects in the short term.

Thanks everyone for your feedback

Sophie

[gfp]

hi again

thanks for further comments - it's a complicated decision!

gfp - i was on the diet for about a month when I went back to see the dietician as I developed what looks like an allergy to chicken - getting it tested properly soon. She looked at my food and symptom diary and took me off it as I was getting worse, so clearly not the right approach. I have been cutting more and more things out of my diet over the last year, it is getting to the point where i really can't manage it so I am really looking for a solution.

I honestly would say that one month is not long enough.

This is not to say it is the correct approach or treatment but that 1 month is really hardly starting off if you are coming from serious problems.

One thing it seems unlikely to do is make you worse unless you start compensating with something else.

Obviously the classic here is where people go gluten-free or Vegan etc. and start eating huge amounts of Soy

The benefit is it doesn't interfere with any other treatments nor pump you full of active pharmacuticals.

[gf-soph]

I thought some of you may be interested in an update.

I have been on the tetracycline (50mg daily) now for about 2 months, and it is definitely helping.

Within about 2 weeks it totally cleared up the painful breakout on my scalp, neck and back. I forgot to take them for about a week and it came back, then went away again after resuming the meds. My rosacia is also much better.

It also seems to be helping my gut. Over the last couple of months I have generally had the most settled gut since going gluten-free - much less D, less gas, less pain. Within a couple of weeks there was a major reduction in bloating - i used to have an obviously bloated, hard stomach, I used to have to lean back a lot to give it space. It doesn't stick out any more! A couple of people commented that I had lost weight, when in fact it was just less bloating.

I also used to have hard painful swelling throughout my lower abdomen, my dr commented on it a couple of times, I used to have to massage my abdomen a bit for pain relief. This is pretty much gone. The other day I rubbed my stomach and couldn't believe that it felt soft when I pressed down!

Not sure if it is related, but I also had the first cold since going gluten-free. I used to catch everything going around before going gluten-free, then nothing for over 18 months despite being so run down. After starting the meds, first proper cold. Could be nothing, could be that my immune system isn't quite so quick off the mark?

Things are by no means fixed, but I don't think it's a coincidence that problems that have been consistent for over a year have started to get better since starting the medication. I am still looking for answers but this may be a small part of getting things going in the right direction.

gfp - i was getting worse on the RPA elimination diet, it didn't have any soy in the diet or anything new other than the chicken (had testing, not allergic!). My dietician is very experienced in the diet and i was not responding well to it. 1 month isn't a long time in the scheme of things but they know how people should respond to the diet, and it wasn't helping me at all.

I have tried both the strictest possible chemical elimination diet and a FRODMAT (?) diet, both made things worse. It seems that there is an underlying problem causing multiple food sensitivities, be it leaky gut or some sort of infection. I have been referred to a new gastroenterology practice after my GP went to a presentation of theirs and immediately thought of me when they were presenting patient case studies!

They seem to be pretty cutting edge e.g. treat parasitic infections, c.diff, replacement of gut bacteria etc. I am hoping they will be able to get me heading the right way. If anyone is interested it is in Five Dock Sydney, and is called the centre for digestive disease (first result in google). They also said that for people outside Australia "If you have a query regarding our treatment regimes and protocols please email a brief medical history, without attachments, and we will supply you with some information regarding your medical conditions and our protocols for treating the condition." Could be useful for people trying to treat stubborn infections without experienced professionals.

[Gemini]

I thought some of you may be interested in an update.

I have been on the tetracycline (50mg daily) now for about 2 months, and it is definitely helping.

Within about 2 weeks it totally cleared up the painful breakout on my scalp, neck and back. I forgot to take them for about a week and it came back, then went away again after resuming the meds. My rosacia is also much better.

It also seems to be helping my gut. Over the last couple of months I have generally had the most settled gut since going gluten-free - much less D, less gas, less pain. Within a couple of weeks there was a major reduction in bloating - i used to have an obviously bloated, hard stomach, I used to have to lean back a lot to give it space. It doesn't stick out any more! A couple of people commented that I had lost weight, when in fact it was just less bloating.

I also used to have hard painful swelling throughout my lower abdomen, my dr commented on it a couple of times, I used to have to massage my abdomen a bit for pain relief. This is pretty much gone. The other day I rubbed my stomach and couldn't believe that it felt soft when I pressed down!

Not sure if it is related, but I also had the first cold since going gluten-free. I used to catch everything going around before going gluten-free, then nothing for over 18 months despite being so run down. After starting the meds, first proper cold. Could be nothing, could be that my immune system isn't quite so quick off the mark?

Things are by no means fixed, but I don't think it's a coincidence that problems that have been consistent for over a year have started to get better since starting the medication. I am still looking for answers but this may be a small part of getting things going in the right direction.

gfp - i was getting worse on the RPA elimination diet, it didn't have any soy in the diet or anything new other than the chicken (had testing, not allergic!). My dietician is very experienced in the diet and i was not responding well to it. 1 month isn't a long time in the scheme of things but they know how people should respond to the diet, and it wasn't helping me at all.

I have tried both the strictest possible chemical elimination diet and a FRODMAT (?) diet, both made things worse. It seems that there is an underlying problem causing multiple food sensitivities, be it leaky gut or some sort of infection. I have been referred to a new gastroenterology practice after my GP went to a presentation of theirs and immediately thought of me when they were presenting patient case studies!

They seem to be pretty cutting edge e.g. treat parasitic infections, c.diff, replacement of gut bacteria etc. I am hoping they will be able to get me heading the right way. If anyone is interested it is in Five Dock Sydney, and is called the centre for digestive disease (first result in google). They also said that for people outside Australia "If you have a query regarding our treatment regimes and protocols please email a brief medical history, without attachments, and we will supply you with some information regarding your medical conditions and our protocols for treating the condition." Could be useful for people trying to treat stubborn infections without experienced professionals.

Hi Sophie,

I am glad to hear you are feeling better! Yes, antibiotics do make symptoms disappear and help in many ways but I still caution you to not follow this regimen for too long. I felt better also when I was on Minocin for 2 years BUT what happened afterwards made me regret taking them for so long. I honestly think that if you follow the diet religiously for awhile, the inflammation you have will subside anyway and then maybe you can stop the antibiotic treatment. I had ridiculous inflammation levels at time of diagnosis but they are all way, way down now.

I wish you much luck and hope you can find answers to your on going issues. Thanks for the update and keep us informed of how you are doing.

[sandsurfgirl]

That's wonderful news that it's helping you so much. You are on an extremely low dose, and it's totally different than being on full dose antibiotics long term. There is a lot of paranoia out there about antibiotics and their overuse.

Yes they are overused in some cases, but the biggest danger lies in people not finishing the bottle and that is one of the major causes of superbugs.

If it wasn't for antibiotics I would have died a long time ago. Antibiotics used when indicated are life saving and necessary. I think this approach from your doctor sounds like a good one. Are you taking probiotics to make sure your beneficial bacteria stay strong?

[JBaby]

I did not read the entire post, stopped at GP read research about tetracycline... blah blah. Dont be her test rat. Get a competent clinical nutritionist who works with celiac disease. I didnt read the responses you got either, hop we all agree.

[gf-soph]

Once again thanks for replies.

gemini - I know that my GP doesn't want me on them forever, so no worries there. I too don't like taking medications in the long run, so I will discuss with her how long to stay on them. I have been on a totally strict gluten-free diet for about 18 months, so it is not a matter of non-compliance. I know that there is something else going on, and I am trying hard to work out what that is.

sandsurfgirl - i have been eating cultured yoghurt and taking probiotics, and hopefully the new gastros that I have been referred to will look into the state of things in that regard. My gut has been mostly better than ever, so I'm hopeful that I am getting the balance right.

JBaby - I am quite surprised that you would comment on a post without reading it fully, and expect everyone to agree with your point of view. My Dr is perfectly informed and competent, as you may have picked up if you read the post fully. If no-one ever tried anything different, how would treatments improve? If you have some specific experience or opinion then I'm sure people will be interested to read it, but if you dont even read the post fully how do you expect your reply to be of interest or relevance to the discussion??

[JBaby]

Once again thanks for replies.

gemini - I know that my GP doesn't want me on them forever, so no worries there. I too don't like taking medications in the long run, so I will discuss with her how long to stay on them. I have been on a totally strict gluten-free diet for about 18 months, so it is not a matter of non-compliance. I know that there is something else going on, and I am trying hard to work out what that is.

sandsurfgirl - i have been eating cultured yoghurt and taking probiotics, and hopefully the new gastros that I have been referred to will look into the state of things in that regard. My gut has been mostly better than ever, so I'm hopeful that I am getting the balance right.

JBaby - I am quite surprised that you would comment on a post without reading it fully, and expect everyone to agree with your point of view. My Dr is perfectly informed and competent, as you may have picked up if you read the post fully. If no-one ever tried anything different, how would treatments improve? If you have some specific experience or opinion then I'm sure people will be interested to read it, but if you dont even read the post fully how do you expect your reply to be of interest or relevance to the discussion??

Its from experience gf_soph. Good bye celiac boards....onto better heath.

[sandsurfgirl]

Its from experience gf_soph. Good bye celiac boards....onto better heath.

ONE person's experience has absolutely nothing to do with the effectiveness of a treatment. Have you personally had this particular treatment with tetracycline? Even if you had, nothing is 100% so of course there would be some people who had no response or even had negative effects. That doesn't mean that the treatment is completely without merit.

Without antibiotics most of us on here wouldn't still be alive especially me. They are not inherently evil.