For over a decade this page has been dedicated to enabling the conversation for floxies to talk with one another. Sign up and subscribe to get all the latest comments.
When you login first time using a Social Login button, we collect your account public profile information shared by Social Login provider, based on your privacy settings. We also get your email address to automatically create an account for you in our website. Once your account is created, you'll be logged-in to this account.
DisagreeAgree
I allow to create an account
When you login first time using a Social Login button, we collect your account public profile information shared by Social Login provider, based on your privacy settings. We also get your email address to automatically create an account for you in our website. Once your account is created, you'll be logged-in to this account.
DisagreeAgree
26.5K Comments
Inline Feedbacks
View all comments
Mary
6 years ago
Hi everyone Have u seen the warning from the fda about IMMODIUM/LOPERAMIDE/
Hi all
I don’t visit this site much anymore so I apologize if this has already been brought up: i tried to reach out to a fellow floxie but got no response , but it is the subject on vaccines. Has anyone received the flu shot post flox? Im extremely sceptical about vaccines, but am considering switching careers where vaccines, especially the flu shot, are required. Any thoughts?
Barbara Arnold
6 years ago
L…that article scares me to death, so even only 20% effective I would still have it. Thing is, different Countries have different strains, and so far Spain’s strain seems to be warding off an epidemic. I’m not sure about the UK. It’s all a bloody minefield, but the jab is the only allopathic meficine I take. I do every thing I can to not take meds, but who knows for the future.
I have just finnished my 20 sessions of hyperbaric oxygen therapy and I am feeling so much better. I have decided to have one or two a month to keep up the momentum. I would say overall I am 95 to 98% back to where I was, and considering my age I think that’s quite good. xx
Mary
6 years ago
If anyone is interested you may like to read the warning about IMMODIUM by the FDA.
Mary
6 years ago
LISA I have posted the warning on IMMODIUM no one has responded so I can now only conclude that my posts are hidden . Pathetic.
I was floxed by Cipro at the end of October 2017, so it’s been over 3 months. Luckily I found this site the first day the symptoms appeared (thank you Lisa). My symptoms were neuropathy in the legs and some in the hands, but worst was the attack on the joints, especially shoulders and hands. There was some spaciness mentally, but I think a lot of that was the anxiety of having to deal with the floxing. Since then I have followed the diet and supplements regime.
The neuropathy is pretty much gone, as is the pain and looseness in the hands. One of the shoulder sockets is still weak, but nothing like before.
I found that not all of the supplements in the regime were good for me, because I already have a genetic central nervous system disorder called dysautonomia, and my type includes
scoliosis, mitral valve prolapse and other features that cause issues. So, one has to try the supplements by trial and error, especially the dosages, to see how you react. Dysautonomiacs are hypersensitive to medications and supplements, so, especially with Magnesium, I have to be careful. The recommendation by one of the participants here named John to do Espsom salt foot soaks has been very helpful, with no side effects, and
the relief is pretty quick. I also have Magnesium spray and gel when one joint acts up.
The tendency is to do too much too quickly, which for me caused nausea and loose stools for a few days, as I was taking magnesium pills and the gel at the same time.
Organic bone broth (they have it at Whole Foods and even at the Publix supermarket) is great to keep up collagen and protein, but I also take collagen supplement, the type recommended on the regime, plus the recommended multivitamin (which has a good amount of magnesium already), Vitamin C, D3, Omega capsules, etc. I found CoQ10 to
aggravate palpitations, so I backed off, but that was due to dysautonomia.
Organic plain kefir (not the versions with sugared flavors) has been great for the digestive system. No issues since having it daily. I mix it with organic gluten-free oatmeal and berries in the morning.
Exercise daily, but no more than 30 minutes – swimming/walking/elliptical/light weights (but be careful or even avoid if joints are affected). Also, there is a very good website for dealing with anticipatory anxiety
at http://www.verywellmind.com, plus Andrew Weil has a CD for breath techniques to help with
anxiety.
Just wanted people to know it gets better. I have stayed absolutely away from sugar, tobacco, alcohol. Eating organic (not just plants, but fish and chicken with no antibiotics, hormones, etc.) and staying hydrated. Pure water. Fight through and keep doing
the things you need and love to do as much as possible. Keep your living area neat and clean, to help feel normal. Envision yourself getting better. Listen to music, watch funny TV, be with people who care about you and who are willing to listen.
This is just what has worked for me. Run everything by your doctor first. Everyone is different, but everyone’s body wants to heal if you let it. The body is very intelligent, and
has a lot of power and resources already built in for healing. Just allow it to do so by
giving it what it needs to heal.
Mary
6 years ago
Dear Peter Just wanted to say what a great .If u don’t mind my saying so.
A few days ago the PN seemed to calm down. I was worried as I had not taken any magnesium for a few days and felt I needed it to help the D3 absorb. I am convinced the magnesium triggered off a reaction. I feel suicidal.
I cannot take CoQ10 enzyme either due to cardiac issues. Please can u tell me how to buy the organic bone broth? Is it produced in the UK or just the US?
Magnesium gives me the same problems as it gives you .
How are you feeling now/
Mary
6 years ago
PETER meant to write what a great posting.
Peter
6 years ago
Hi Mary – the bone broth comes in cartons of different sizes, for beef, chicken and turkey broth. Your local health food store can get it for you if they don’t have it in stock. Whole Foods also has bone broths with herbs, mushrooms, etc., for taste, as the
plain bone broth is pretty bland. I sometimes mix in celery, carrots, salt (I use Himalayan pink salt, which has lots of good minerals in it). I actually also need salt for blood volume, which is a dysautonomia issue – the opposite of most people.
I just looked on Amazon – for bone broths they have Pacific brand and Kettle and Fire, the two types I use – in cartons. It’s not cheap, but I find it very helpful – your body will tell you how much to take. Some days I want it more than others.
From what I understand: whatever fluoroquinolone is taken leeches magnesium from connective tissue, and needs to be replaced. D3 is needed to process, as is calcium, but
it is recommended to get your calcium through your food rather than supplements, due to
potential interference by the calcium supplement to other processes. If you take it through your food, your body will process it as needed to work with the magnesium. Your body’s internal doctor is the best and smartest doctor you can get.
If you had a bad reaction to the magnesium, you likely took too much. The amount recommended on this site was way too much for me, even when I did a gradual increase – caused palpitations, loose stools,
nausea. But, when I reduced the dosage (I top out at 300-400 per day, including gel or spray) on the magnesium, those symptoms went away and clicking, popping, pain and looseness in the joints subsided. But, I again recommend the Epsom salt foot baths that John recommended on this site. I use a plastic tub big enough for both feet, fill it with warm water up to the ankles, and put in 2 lbs of the salt, and move my feet around in it until it dissolves,
and have my feet in it for 15 minutes, then wipe off with a towel. I do not rinse off right away.
In the same way as above, the body seems to know exactly how much to absorb (magnesium absorbs easily through the skin, and the feet are the most resilient access point and less prone to dryness.) If you do the foot baths and still have pain, then a good magnesium gel or spray, applied very lightly to the area of concern, can help directly and quickly.
Again, run all of this by your doctor, especially if you have cardiac issues. Magnesium
is something you have to be very careful with. Floxies need it more than other people, but
it is easy to take too much. Everyone’s body is different. Having dysautonomia makes me hypersensitive to all meds and supplements, so I take less of everything than normal.
The article that was presented by Lisa Palmer called “The Vagus Nerve Guide” is very good.
Has a lot of good stuff in it to learn how to relax and get your parasympathetic (rest and healing) part of your central nervous system stimulated, and to get many of the body’s organs into equilibrium, and reduce stress and anxiety. I got it on the Amazon online feature off the link from this site.
Visualizing yourself getting better, one day at a time, is very powerful. Don’t fall prey to
the negative thoughts. Reject them and visualize yourself healthy on a peaceful beach, breathing normally and relaxed, and happy and confident. It really works to activate
healing hormones and to just relax and relieve worry. The mind has a lot to do with this.
If you have Apple TV, watch the movie called “Heal”. Excellent movie about the power of
mind to heal.
I am not a doctor, and am only talking from my experience and personal researach. Run any suggestions on this site by your doctor first (I have found that most doctors need to be educated about this syndrome – bring literature and shove it in their face if they look skeptical). Most specialists are myopic, and focus only on their specialty, and do not have
holistic knowledge of the body. My best link is my general practitioner, who I have been seeing for over 25 years – he is more open and knowledgeable about all these things, as he
sees many different conditions and ailments, whereas specialists only see ailments within their discipline. I have seen a lot of specialists over the years, and most of them are more ignorant than they want to admit.
Keep going – you will heal, don’t worry. Enjoy your life, and adjust the way you see
what you are going through – see an open peaceful road rather than a prison, because that
open road runs next to the beautiful beach, where you can go if you want to relax and watch the beauty, and breathe slowly and deeply.
Mary
6 years ago
Dear Peter I love the way you write. I cannot stand feeling the way I do and can see no light at the end of the tunnel. Can you believe that I bought a foot bath before Christmas plus Ancient Mineral salts and I am too scared to try it just in case it does not work for me. This will make me lose all hope. AT the moment my pn is changing. Whether for the better remains to be seen. I feel as if I am sitting on rocks , this was the start of the PN. I have a pain down my right buttock but it does not feel like sciatica just a ridge . Difficult to explain. Last night I had terrible nightmares too horrific to even write about.
I see everything as a waste of time, alienated, abandoned.
I feel that there is a better place than being alive yet scared to die etc. I feel demotivated. Just having a strip wash twice a day . I feel an aversion to water. What is wrong wwith me it is more than being depressed can’t be bothered feeling.
Thanks for all you have written it is most welcome and I will try to put it into practice.
Thank you once again. Thank you Lisa et al.
Andrea
6 years ago
Hi everyone. After reading about stem cells, I’ve just contacted, via email, a stem cells clinic in Switzerland. I’ll keep you updated as soon as they answer me.
Hi everyone. I’m probably going to do a new medical exam, and there’s a big chance of contracting a Urinary tract infection from that. I’ve already explained to the doctor my problems, and he prescribed me Trimethoprim/sulfamethoxazole by the commercial name Bactrim. Does anyone knows if it’s compatible for us floxies? Thanks a lot.
Mary
6 years ago
Contact Us
Johns Hopkins Lupus Center
You are here: Home / Lupus Primer / Lifestyle and Additional Information / Things to Avoid
Things to Avoid
If you have lupus or a condition that predisposes you to lupus, such as undifferentiated connective tissue disease (UCTD), there are certain foods and medications that you should avoid. The substances listed below have shown to induce lupus signs and flares and should be avoided by people with lupus or autoimmune diseases suggesting “pre-lupus.”
(1) Sunlight
People with lupus should avoid the sun, since sunlight can cause rashes and flares. Some people are more sensitive to sunlight than others, but all people with lupus are advised to be cautious when they are outside. Of course, it would be impractical to completely avoid going outdoors, but try to be prepared. Carry a sunscreen with an SPF of at least 70 and be sure that your sunscreen contains Helioplex, an ingredient that blocks UV-A and UV-B rays, both of which are harmful to people with lupus. Apply sunscreen to all areas of the body, even those covered by your clothes, since most normal clothing items only protect your skin to the level of SPF 5. In addition, carry a hat with you when you know you will be outside. Certain sportswear manufacturers now make hats with SPF built into the material, which may be helpful for people with greater photosensitivity.
(2) Bactrim and Septra (sulfamethoxazole and trimethoprim)
Bactrim and Septra are antibiotics that contain sulfamethoxazole and trimethoprim. They are grouped as “sulfa” antibiotics because they contain a substance called sulfonamide. Bactrim and Septra are often prescribed for bacterial infections, especially urinary tract infections. They are also sometimes given prophylactically (i.e., to prevent infection), especially in people taking immunosuppressive medications. However, it is very important that you avoid Bactrim and Septra, because these antibiotics are known to cause an increase in sun sensitivity and lower blood counts in people with lupus, resulting in lupus flares. Several medications can be used instead of Bactim or Septra for the prevention and treatment of infection; perhaps the most frequently used substitute is Dapsone (diaminodiphenyl sulfone) to prevent Pneumocystis pneumonia.
(3) Garlic
Scientists believe that three substancs in garlic—allicin, ajoene, and thiosulfinates—rev-up your immune system by enhancing the activity of white blood cells, particularly macrophages and lymphocytes. Scientists also believe that the sulfur components of garlic help to prevent and suppress cancer in the body. For this reason, garlic is often used as a supplement to combat colds and infections. Unfortunately, the enhancement of immune response is counterproductive in people with autoimmune disease such as lupus, because their immune system is already overactive. As a result, people with lupus and lupus-like signs should avoid cooking with garlic and adding it to food. Of course, a tiny amount of the herb will not harm you, but try to consciously avoid purchasing and preparing foods with garlic.
(4) Alfalfa Sprouts
Alfalfa sprouts contain an amino acid called L-canavanine that can increase inflammation in people with lupus by stimulating the immune system. As a result, people with lupus and similar autoimmune conditions should avoid alfalfa sprouts completely.
(5) Melatonin and Rozerem (ramelteon)
Melatonin is a hormone secreted by the pineal gland in your brain that regulates other hormones in the body that control how your body reacts to daily patterns of light and dark. Melatonin release is suppressed during the light hours of the day and stimulated by dark, helping you stick to patterns of nighttime sleep and daytime wakefulness. As a result, melatonin is often used as a sleep aid over other medications. Melatonin and melatonin-containing supplements should be avoided in people with lupus and other autoimmune disorders because they may stimulate the immune system. In addition, people with these conditions should also avoid the prescription sleep aid Rozerem (ramelteon), because it mimics melatonin in the body. It is important that you understand the necessity of avoiding both melatonin and Rozerem, since sleep aids are often used to help people with fibromylagia and other conditions to attain normal sleep patterns. In general, be sure that you speak with your physician before taking any new medications or supplements.
(6) Echinacea
Echinacea is often used as a dietary supplement to boost the immune system against colds and other illnesses. However, because Echinacea boosts your immune system, it may cause flares in people with autoimmune diseases such as lupus. In fact, Echinacea supplements sold in Europe bear warning labels that advise against use by people with autoimmune diseases. As a result, people with lupus and other autoimmune diseases should avoid these supplements. In general, it is important that you speak with your physician before taking any new medications or supplements.
Meet Dr. Petri
Contact Us
Lupus Educational Workshop.
Rheumatology Course
Rheumatology Specialty Centers
Arthritis Center
Consultative Rheumatology
Lyme Disease Research Center
Myositis Center
Scleroderma Center
Jerome L. Greene Sjögren’s Syndrome Center
Vasculitis Center
Connect With Us
jérôme
6 years ago
jat92517,what do you mean by saturated foot bath?
Mary
6 years ago
Lisa I go to the trouble of researching so that answers to questions of the members of this forum can be studied and on each and every one or posting I send you put awaiting moderation.
WHY?
Hi everyone Have u seen the warning from the fda about IMMODIUM/LOPERAMIDE/
Hi all
I don’t visit this site much anymore so I apologize if this has already been brought up: i tried to reach out to a fellow floxie but got no response , but it is the subject on vaccines. Has anyone received the flu shot post flox? Im extremely sceptical about vaccines, but am considering switching careers where vaccines, especially the flu shot, are required. Any thoughts?
L…that article scares me to death, so even only 20% effective I would still have it. Thing is, different Countries have different strains, and so far Spain’s strain seems to be warding off an epidemic. I’m not sure about the UK. It’s all a bloody minefield, but the jab is the only allopathic meficine I take. I do every thing I can to not take meds, but who knows for the future.
I have just finnished my 20 sessions of hyperbaric oxygen therapy and I am feeling so much better. I have decided to have one or two a month to keep up the momentum. I would say overall I am 95 to 98% back to where I was, and considering my age I think that’s quite good. xx
If anyone is interested you may like to read the warning about IMMODIUM by the FDA.
LISA I have posted the warning on IMMODIUM no one has responded so I can now only conclude that my posts are hidden . Pathetic.
https://www.bing.com/search?q=new+antibiotic+compounds+could+be+life+saving&form=EDGEAR&qs=PF&cvid=46eff11c8d69449585e46c49dcc7295f&cc=GB&setlang=en-US&PC=LCTS
https://www.globalresearch.ca/iatrogenesis-and-the-poisonous-nature-of-fluoroquinolone-antibiotic-drugs/5625537
Hello all –
I was floxed by Cipro at the end of October 2017, so it’s been over 3 months. Luckily I found this site the first day the symptoms appeared (thank you Lisa). My symptoms were neuropathy in the legs and some in the hands, but worst was the attack on the joints, especially shoulders and hands. There was some spaciness mentally, but I think a lot of that was the anxiety of having to deal with the floxing. Since then I have followed the diet and supplements regime.
The neuropathy is pretty much gone, as is the pain and looseness in the hands. One of the shoulder sockets is still weak, but nothing like before.
I found that not all of the supplements in the regime were good for me, because I already have a genetic central nervous system disorder called dysautonomia, and my type includes
scoliosis, mitral valve prolapse and other features that cause issues. So, one has to try the supplements by trial and error, especially the dosages, to see how you react. Dysautonomiacs are hypersensitive to medications and supplements, so, especially with Magnesium, I have to be careful. The recommendation by one of the participants here named John to do Espsom salt foot soaks has been very helpful, with no side effects, and
the relief is pretty quick. I also have Magnesium spray and gel when one joint acts up.
The tendency is to do too much too quickly, which for me caused nausea and loose stools for a few days, as I was taking magnesium pills and the gel at the same time.
Organic bone broth (they have it at Whole Foods and even at the Publix supermarket) is great to keep up collagen and protein, but I also take collagen supplement, the type recommended on the regime, plus the recommended multivitamin (which has a good amount of magnesium already), Vitamin C, D3, Omega capsules, etc. I found CoQ10 to
aggravate palpitations, so I backed off, but that was due to dysautonomia.
Organic plain kefir (not the versions with sugared flavors) has been great for the digestive system. No issues since having it daily. I mix it with organic gluten-free oatmeal and berries in the morning.
Exercise daily, but no more than 30 minutes – swimming/walking/elliptical/light weights (but be careful or even avoid if joints are affected). Also, there is a very good website for dealing with anticipatory anxiety
at http://www.verywellmind.com, plus Andrew Weil has a CD for breath techniques to help with
anxiety.
Just wanted people to know it gets better. I have stayed absolutely away from sugar, tobacco, alcohol. Eating organic (not just plants, but fish and chicken with no antibiotics, hormones, etc.) and staying hydrated. Pure water. Fight through and keep doing
the things you need and love to do as much as possible. Keep your living area neat and clean, to help feel normal. Envision yourself getting better. Listen to music, watch funny TV, be with people who care about you and who are willing to listen.
This is just what has worked for me. Run everything by your doctor first. Everyone is different, but everyone’s body wants to heal if you let it. The body is very intelligent, and
has a lot of power and resources already built in for healing. Just allow it to do so by
giving it what it needs to heal.
Dear Peter Just wanted to say what a great .If u don’t mind my saying so.
A few days ago the PN seemed to calm down. I was worried as I had not taken any magnesium for a few days and felt I needed it to help the D3 absorb. I am convinced the magnesium triggered off a reaction. I feel suicidal.
I cannot take CoQ10 enzyme either due to cardiac issues. Please can u tell me how to buy the organic bone broth? Is it produced in the UK or just the US?
Magnesium gives me the same problems as it gives you .
How are you feeling now/
PETER meant to write what a great posting.
Hi Mary – the bone broth comes in cartons of different sizes, for beef, chicken and turkey broth. Your local health food store can get it for you if they don’t have it in stock. Whole Foods also has bone broths with herbs, mushrooms, etc., for taste, as the
plain bone broth is pretty bland. I sometimes mix in celery, carrots, salt (I use Himalayan pink salt, which has lots of good minerals in it). I actually also need salt for blood volume, which is a dysautonomia issue – the opposite of most people.
I just looked on Amazon – for bone broths they have Pacific brand and Kettle and Fire, the two types I use – in cartons. It’s not cheap, but I find it very helpful – your body will tell you how much to take. Some days I want it more than others.
From what I understand: whatever fluoroquinolone is taken leeches magnesium from connective tissue, and needs to be replaced. D3 is needed to process, as is calcium, but
it is recommended to get your calcium through your food rather than supplements, due to
potential interference by the calcium supplement to other processes. If you take it through your food, your body will process it as needed to work with the magnesium. Your body’s internal doctor is the best and smartest doctor you can get.
If you had a bad reaction to the magnesium, you likely took too much. The amount recommended on this site was way too much for me, even when I did a gradual increase – caused palpitations, loose stools,
nausea. But, when I reduced the dosage (I top out at 300-400 per day, including gel or spray) on the magnesium, those symptoms went away and clicking, popping, pain and looseness in the joints subsided. But, I again recommend the Epsom salt foot baths that John recommended on this site. I use a plastic tub big enough for both feet, fill it with warm water up to the ankles, and put in 2 lbs of the salt, and move my feet around in it until it dissolves,
and have my feet in it for 15 minutes, then wipe off with a towel. I do not rinse off right away.
In the same way as above, the body seems to know exactly how much to absorb (magnesium absorbs easily through the skin, and the feet are the most resilient access point and less prone to dryness.) If you do the foot baths and still have pain, then a good magnesium gel or spray, applied very lightly to the area of concern, can help directly and quickly.
Again, run all of this by your doctor, especially if you have cardiac issues. Magnesium
is something you have to be very careful with. Floxies need it more than other people, but
it is easy to take too much. Everyone’s body is different. Having dysautonomia makes me hypersensitive to all meds and supplements, so I take less of everything than normal.
The article that was presented by Lisa Palmer called “The Vagus Nerve Guide” is very good.
Has a lot of good stuff in it to learn how to relax and get your parasympathetic (rest and healing) part of your central nervous system stimulated, and to get many of the body’s organs into equilibrium, and reduce stress and anxiety. I got it on the Amazon online feature off the link from this site.
Visualizing yourself getting better, one day at a time, is very powerful. Don’t fall prey to
the negative thoughts. Reject them and visualize yourself healthy on a peaceful beach, breathing normally and relaxed, and happy and confident. It really works to activate
healing hormones and to just relax and relieve worry. The mind has a lot to do with this.
If you have Apple TV, watch the movie called “Heal”. Excellent movie about the power of
mind to heal.
I am not a doctor, and am only talking from my experience and personal researach. Run any suggestions on this site by your doctor first (I have found that most doctors need to be educated about this syndrome – bring literature and shove it in their face if they look skeptical). Most specialists are myopic, and focus only on their specialty, and do not have
holistic knowledge of the body. My best link is my general practitioner, who I have been seeing for over 25 years – he is more open and knowledgeable about all these things, as he
sees many different conditions and ailments, whereas specialists only see ailments within their discipline. I have seen a lot of specialists over the years, and most of them are more ignorant than they want to admit.
Keep going – you will heal, don’t worry. Enjoy your life, and adjust the way you see
what you are going through – see an open peaceful road rather than a prison, because that
open road runs next to the beautiful beach, where you can go if you want to relax and watch the beauty, and breathe slowly and deeply.
Dear Peter I love the way you write. I cannot stand feeling the way I do and can see no light at the end of the tunnel. Can you believe that I bought a foot bath before Christmas plus Ancient Mineral salts and I am too scared to try it just in case it does not work for me. This will make me lose all hope. AT the moment my pn is changing. Whether for the better remains to be seen. I feel as if I am sitting on rocks , this was the start of the PN. I have a pain down my right buttock but it does not feel like sciatica just a ridge . Difficult to explain. Last night I had terrible nightmares too horrific to even write about.
I see everything as a waste of time, alienated, abandoned.
I feel that there is a better place than being alive yet scared to die etc. I feel demotivated. Just having a strip wash twice a day . I feel an aversion to water. What is wrong wwith me it is more than being depressed can’t be bothered feeling.
Thanks for all you have written it is most welcome and I will try to put it into practice.
Thank you once again. Thank you Lisa et al.
Hi everyone. After reading about stem cells, I’ve just contacted, via email, a stem cells clinic in Switzerland. I’ll keep you updated as soon as they answer me.
Has anyone heard of 54000DOCTORS.org
https://articles.mercola.com/sites/articles/archive/2014/05/04/detoxification-program.aspx
Maybe it’s interesting
Did someone try a diet or a fasting?
Hi everyone. I’m probably going to do a new medical exam, and there’s a big chance of contracting a Urinary tract infection from that. I’ve already explained to the doctor my problems, and he prescribed me Trimethoprim/sulfamethoxazole by the commercial name Bactrim. Does anyone knows if it’s compatible for us floxies? Thanks a lot.
Contact Us
Johns Hopkins Lupus Center
You are here: Home / Lupus Primer / Lifestyle and Additional Information / Things to Avoid
Things to Avoid
If you have lupus or a condition that predisposes you to lupus, such as undifferentiated connective tissue disease (UCTD), there are certain foods and medications that you should avoid. The substances listed below have shown to induce lupus signs and flares and should be avoided by people with lupus or autoimmune diseases suggesting “pre-lupus.”
(1) Sunlight
People with lupus should avoid the sun, since sunlight can cause rashes and flares. Some people are more sensitive to sunlight than others, but all people with lupus are advised to be cautious when they are outside. Of course, it would be impractical to completely avoid going outdoors, but try to be prepared. Carry a sunscreen with an SPF of at least 70 and be sure that your sunscreen contains Helioplex, an ingredient that blocks UV-A and UV-B rays, both of which are harmful to people with lupus. Apply sunscreen to all areas of the body, even those covered by your clothes, since most normal clothing items only protect your skin to the level of SPF 5. In addition, carry a hat with you when you know you will be outside. Certain sportswear manufacturers now make hats with SPF built into the material, which may be helpful for people with greater photosensitivity.
(2) Bactrim and Septra (sulfamethoxazole and trimethoprim)
Bactrim and Septra are antibiotics that contain sulfamethoxazole and trimethoprim. They are grouped as “sulfa” antibiotics because they contain a substance called sulfonamide. Bactrim and Septra are often prescribed for bacterial infections, especially urinary tract infections. They are also sometimes given prophylactically (i.e., to prevent infection), especially in people taking immunosuppressive medications. However, it is very important that you avoid Bactrim and Septra, because these antibiotics are known to cause an increase in sun sensitivity and lower blood counts in people with lupus, resulting in lupus flares. Several medications can be used instead of Bactim or Septra for the prevention and treatment of infection; perhaps the most frequently used substitute is Dapsone (diaminodiphenyl sulfone) to prevent Pneumocystis pneumonia.
(3) Garlic
Scientists believe that three substancs in garlic—allicin, ajoene, and thiosulfinates—rev-up your immune system by enhancing the activity of white blood cells, particularly macrophages and lymphocytes. Scientists also believe that the sulfur components of garlic help to prevent and suppress cancer in the body. For this reason, garlic is often used as a supplement to combat colds and infections. Unfortunately, the enhancement of immune response is counterproductive in people with autoimmune disease such as lupus, because their immune system is already overactive. As a result, people with lupus and lupus-like signs should avoid cooking with garlic and adding it to food. Of course, a tiny amount of the herb will not harm you, but try to consciously avoid purchasing and preparing foods with garlic.
(4) Alfalfa Sprouts
Alfalfa sprouts contain an amino acid called L-canavanine that can increase inflammation in people with lupus by stimulating the immune system. As a result, people with lupus and similar autoimmune conditions should avoid alfalfa sprouts completely.
(5) Melatonin and Rozerem (ramelteon)
Melatonin is a hormone secreted by the pineal gland in your brain that regulates other hormones in the body that control how your body reacts to daily patterns of light and dark. Melatonin release is suppressed during the light hours of the day and stimulated by dark, helping you stick to patterns of nighttime sleep and daytime wakefulness. As a result, melatonin is often used as a sleep aid over other medications. Melatonin and melatonin-containing supplements should be avoided in people with lupus and other autoimmune disorders because they may stimulate the immune system. In addition, people with these conditions should also avoid the prescription sleep aid Rozerem (ramelteon), because it mimics melatonin in the body. It is important that you understand the necessity of avoiding both melatonin and Rozerem, since sleep aids are often used to help people with fibromylagia and other conditions to attain normal sleep patterns. In general, be sure that you speak with your physician before taking any new medications or supplements.
(6) Echinacea
Echinacea is often used as a dietary supplement to boost the immune system against colds and other illnesses. However, because Echinacea boosts your immune system, it may cause flares in people with autoimmune diseases such as lupus. In fact, Echinacea supplements sold in Europe bear warning labels that advise against use by people with autoimmune diseases. As a result, people with lupus and other autoimmune diseases should avoid these supplements. In general, it is important that you speak with your physician before taking any new medications or supplements.
Meet Dr. Petri
Contact Us
Lupus Educational Workshop.
Rheumatology Course
Rheumatology Specialty Centers
Arthritis Center
Consultative Rheumatology
Lyme Disease Research Center
Myositis Center
Scleroderma Center
Jerome L. Greene Sjögren’s Syndrome Center
Vasculitis Center
Connect With Us
jat92517,what do you mean by saturated foot bath?
Lisa I go to the trouble of researching so that answers to questions of the members of this forum can be studied and on each and every one or posting I send you put awaiting moderation.
WHY?