Treating Lupus Naturally

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peacesoul
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Date Joined Jan 2007
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   Posted 7/25/2007 4:10 PM (GMT -6)   
I took the plaq which didn't agree with me so I have no other choice but to naturally heal. I'm a huge believer in natural remedies and healing the mind to also heal the body.
Does anyone treat their lupus naturally or treat with meds along with natural healers? How are you healing your mind as well (from the depression and anxiety lupus causes)?
Any and all input would be great.
 
Jen
 
 
 

okie
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Date Joined Dec 2006
Total Posts : 2818
   Posted 7/25/2007 4:31 PM (GMT -6)   

Hi Jen how ya doing? I have actually been studing about Edgar Cayce ( the sleeping prophet) about his thoughts on Lupus as well as other diseases. They have holistic centers with his name on them. He beleives in healing of the body, mind , and spirit. Which I can't argue that. Since we are not just a body. We are all of the above. I havn't gotten very far with it yet since I recently became pretty sick. But I do want to investigate more. It's like when i exercise it makes me feel better. Or when I pray I get strengthened.  There isn't alot of support out there for it though. And in my little town they probably don't even know who cayce is lol.

hugs

carol



God Bless
Carol
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax.5mg
 
When things are really dark look up. You can see the stars.
 
 
 


peacesoul
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Date Joined Jan 2007
Total Posts : 2430
   Posted 7/25/2007 4:48 PM (GMT -6)   
Hi Carol...I'm so-so. I'm on vacation but am not feeling very strong. I did something silly and sat in the sun on Saturday. I used to tan all summer and it never ever bothered me. Now it seems like the sun gave me some weird symptoms like bad chills, aches and some weird brain fog....it was odd!

I agreee, healing the mind is just as important as healing the body. I've never heard of Edgar Cayce (I'll google him).
I have however, read many books on healing.
I'm lucky that I live in a very large city where natural healing is way more accepted and accessible.

Do you take anything natural along with your meds?

Have you been feeling better this week?>

Jen

hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 7/25/2007 7:57 PM (GMT -6)   
Jen, I've always been interested in natural and alternative treatments for lupus, but never had the courage to try them. Mostly it's because in the US, supplements, herbs, and most of these products are not regulated by the FDA, so you have no idea if what they put in the supplements is really safe. It's hard for me to explain it (foggy brain) but I've read when "experts" have actually looked at what is really in some supplements, that many times it wasn't the dosage that was labeled and there were some other problems I can't remember. If I was going to take any natural remedies, I'd make sure to go to the most reputable place you know or find a doctor who is really familiar with these products. I think I had mentioned DHEA to you. I went so far as to buy some a few years ago, but never took it. I also have a friend whose brother in law went to school to practice Chinese medicine who said he thought he could help. I kind of wish I had done it when I first got sick and wasn't on all the meds I'm on now, because I'm now worried how things would react with the meds I take and my disease has progressed too much for me to quit any of my meds.

I'm a strong believer in the mind/body connection and fully believe you have to take care of both, especially when dealing with an illness. I've heard differing veiws on accupuncture - some people say it helps, other people say it doesn't, but most people I've heard from say it very relaxing. I think massage can be good too, but you have to find someone who is familiar with lupus.

I don't know if I'm making any sense - I feel like I'm rambling. The best advice I have is to talk to your doc and see what he thinks - I think you said that yours was very open to natural remedies and maybe ask your doc where the best place to get any supplements would be. You need to make sure they are safe. One thing you have going for you is that you aren't on any meds now so you don't have to worry about drug interactions. Ultimately this is a personal choice that only you can make.

Good luck and let us know how things go.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

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halfcrazy
Regular Member


Date Joined Jan 2006
Total Posts : 22
   Posted 7/25/2007 9:56 PM (GMT -6)   
Hi Jen, I believe in natural treatments as well, but unfortunatley my doctor insisted that I take them WITH my normal medication. The holistic person I went to was really nice though, and said that was fine, just not as effective. I found the "pills" he gave worked pretty well. And the examination re-affirmed my believe in holistic/natural treatments... it was completley non invasive (I forget what the method was called) but the guy just tapped at pressure points. Anyhow, he came up with the same results that had taken doctors months to get with bloodwork and stuff.

I think that the natural treatments helped me greatly (The ones I was on were apparently designed to take pressure off of certain organs =] I know I miss school a lot less. It may be the combination or just the natural stuff; you never know)

As for healing the mind, I do a lot of yoga when I'm able to, and also walk when I'm able to. Mostly the yoga and meditation helps and is really relaxing though!

Hope you are alright and in high spirits!

NikkiETHS
New Member


Date Joined Jul 2007
Total Posts : 2
   Posted 7/25/2007 11:39 PM (GMT -6)   
Hi Jen!  I as of yet do not have Lupus but my mom has had it for 17 or more years.  She has been completely off all medications now for well over 10 years by doing the following.  She takes a supplement called Dr. Burgsteiner's Thymic Factors(double doses, more on off days) in conjunction with Super Multiple 50 Vitamin.  I believe she gets the Thymic Factors from Walmart, but am not sure about the Vitamins.  I think her pharmacist special orders them b/c they have to be exact.  Also, I gave this information to a woman whose daughter in law has lupus and she in turn took it to her physician.  They both did research on it and decided it was safe for her to take.  She has currently been wheened off all her medications and is only taking this combination because her numbers dramatically improved.  As with any new or alternative treatments, I would definitely speak to the healthcare provider before taking it.  It is such a shame the number of people I have incountered with Lupus over the years.  Best of Luck to you!  Let me know how you do!

peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2430
   Posted 7/26/2007 11:05 PM (GMT -6)   
hippimom2 said...
Jen, I've always been interested in natural and alternative treatments for lupus, but never had the courage to try them. Mostly it's because in the US, supplements, herbs, and most of these products are not regulated by the FDA, so you have no idea if what they put in the supplements is really safe. It's hard for me to explain it (foggy brain) but I've read when "experts" have actually looked at what is really in some supplements, that many times it wasn't the dosage that was labeled and there were some other problems I can't remember. If I was going to take any natural remedies, I'd make sure to go to the most reputable place you know or find a doctor who is really familiar with these products. I think I had mentioned DHEA to you. I went so far as to buy some a few years ago, but never took it. I also have a friend whose brother in law went to school to practice Chinese medicine who said he thought he could help. I kind of wish I had done it when I first got sick and wasn't on all the meds I'm on now, because I'm now worried how things would react with the meds I take and my disease has progressed too much for me to quit any of my meds.

I'm a strong believer in the mind/body connection and fully believe you have to take care of both, especially when dealing with an illness. I've heard differing veiws on accupuncture - some people say it helps, other people say it doesn't, but most people I've heard from say it very relaxing. I think massage can be good too, but you have to find someone who is familiar with lupus.

I don't know if I'm making any sense - I feel like I'm rambling. The best advice I have is to talk to your doc and see what he thinks - I think you said that yours was very open to natural remedies and maybe ask your doc where the best place to get any supplements would be. You need to make sure they are safe. One thing you have going for you is that you aren't on any meds now so you don't have to worry about drug interactions. Ultimately this is a personal choice that only you can make.

Good luck and let us know how things go.

Hi Hippi.....It's true that many suppliments are not regulated by the FDA, but many of these natural remedies and suppliments are approved by the ND associations. You have to keep in mind, the FDA has approved pharmacutical meds that have actually killed people. They also approve aspartame. Aspartame is made my Monsanto (one of the largest chemical co's in the world) in which the FDA gets grants and funding by them. So I am not a firm believer in the FDA or their approval methods for drugs.
It is true, many of these suppliments co's are trying to make a fast buck and could be producing harmful substances, but again, pharmacutical meds are more dangerous than any unregulated vit or suppliment.
DHEA is a very safe suppliment when bought through a reputable health food store.
I can totally understand though, how you would be worried about taking something that may make you not feel well, but large reputable suppliment co's are very safe.

My Dr's are very open, but I would not even go to them about their input regarding natural remedies. I would go stickly to a ND or Homeopath.
I also heard accupuncture works wonders.....I may try that. My boyfriend gives the best massages so I got lucky there ;-)
 
My fear is and will always be in taking too many drugs that pollute my liver and actually make my illness worse. Working the body in a natural way does not pollute the liver.
 
I take L Glutamine (which takes my joint pain away), high does Vit b, zinc, oil or oregano, omegas and I eat clean, work out.......now what I need to work on is lowering my stress level. My anxiety and depression is pretty high right now.
I need to work on that.
 
:-)
Jen

peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2430
   Posted 7/26/2007 11:09 PM (GMT -6)   
halfcrazy said...
Hi Jen, I believe in natural treatments as well, but unfortunatley my doctor insisted that I take them WITH my normal medication. The holistic person I went to was really nice though, and said that was fine, just not as effective. I found the "pills" he gave worked pretty well. And the examination re-affirmed my believe in holistic/natural treatments... it was completley non invasive (I forget what the method was called) but the guy just tapped at pressure points. Anyhow, he came up with the same results that had taken doctors months to get with bloodwork and stuff.

I think that the natural treatments helped me greatly (The ones I was on were apparently designed to take pressure off of certain organs =] I know I miss school a lot less. It may be the combination or just the natural stuff; you never know)

As for healing the mind, I do a lot of yoga when I'm able to, and also walk when I'm able to. Mostly the yoga and meditation helps and is really relaxing though!

Hope you are alright and in high spirits!
Hi....sounds like you met with a great natural healer. It's SO HARD for many non-believers to believe that a natural Dr can see signs of illness w/out tests.
 
I'm so happy to hear the natural treatments worked for you.
Yoga is awesome and I would love to try that.
 
My spirits are ok and will get better once I get my stress in order.
 
Thanks for your reply
 
Jen

peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2430
   Posted 7/26/2007 11:16 PM (GMT -6)   
NikkiETHS said...
Hi Jen!  I as of yet do not have Lupus but my mom has had it for 17 or more years.  She has been completely off all medications now for well over 10 years by doing the following.  She takes a supplement called Dr. Burgsteiner's Thymic Factors(double doses, more on off days) in conjunction with Super Multiple 50 Vitamin.  I believe she gets the Thymic Factors from Walmart, but am not sure about the Vitamins.  I think her pharmacist special orders them b/c they have to be exact.  Also, I gave this information to a woman whose daughter in law has lupus and she in turn took it to her physician.  They both did research on it and decided it was safe for her to take.  She has currently been wheened off all her medications and is only taking this combination because her numbers dramatically improved.  As with any new or alternative treatments, I would definitely speak to the healthcare provider before taking it.  It is such a shame the number of people I have incountered with Lupus over the years.  Best of Luck to you!  Let me know how you do!
This VERY interesting to read.
Why did she get off all the meds?
I stopped Plaq after two months b/c it was the most toxic horrible thing I ever put in my body. I've since met and spoke with others (some ppl who took it for Malaria) that have told me the same thing. This drug is brutal and cannot be taken without some sort of antidepressant or anti anxiety med
Thymic Factor? I"m going to google that.
 
It's so sad that dr's pump lupus patients up with drugs before offering a natural remedy first. Considering no researcher or dr even knows what Lupus is.
 
Thanks for your post......it gives me a new hope  :-)

Jen

karasmommy
Veteran Member


Date Joined Mar 2005
Total Posts : 589
   Posted 7/27/2007 11:00 AM (GMT -6)   
I treat my Lupus/Crohn's pretty naturally.  At this point the only meds I am taking are Plaq. and Flexeril as needed (I need to update my sig).  This is what kind of diet I basically follow:
 
I have been able to greatly reduce the inflamation in both my joints and GI tract by eliminating all forms of Wheat/gluten in my diet and also eliminating any form of suger (suger, honey, molasses, maple syrup, etc.)  Eliminating these has also enabled me to get off of Immuran (prescribed for the Crohn's mainly) and not have any flares for the past 4 months.
 
I also have incorporated naturally cultured foods into my diet in great amounts (plain homeade yogurt, kefir, miso, tempeh, veggies, ect).  This has cleared up my digestion wonderfully - really has made a difference with the Crohn's.  These foods are high in probiotics. 
 
I also take Fish Oil, cal/mag supplement and a daily vitamin along with a Probiotic daily.  I also aim to eat as organically (veggies) and hormone free chicken, and lots of wild fish.  I can't handle beef in any form.
 
I have not been able to get off the the Plaq. I am exhausted and in severe muscle pain when I do.  I have tried a few times.  But I feel this drug is better for me than the horrible side effects that I got with being on Immuran (non-stop yeast infections all the time!!!)
 
Jen - I know you were having problems with this and took yourself off.  I can only take the name brand or else I itch. I have never taken an anti-depressent with it - so I don't think that everyone that takes Plaq. must take one.   But that is just my thoughts!!
 
I still have bad days where I am just exhausted, but the joint pain doesn't nearly get as bad as it used to, now I have a few days that are bad every month. 
 
I think that there are things that work great for some but not for others - for me I have learned over the past 5 years what works exactly for me.  It has taken time, research, and all those good things to figure it out.
Ellen
Diagnosed with Lupus - April 2002
Diagnosed with Crohn's Disease - January 2003 (problems since early 1990)
Fibromyalgia 2005 
Meds:  Lunesta 2mg, Flexeril 10mg as needed, Plaquenil 200mg, Probiotics, Multi-vitamin, fish oil
Off Immuran as of April 1st and doing well!!
 


peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2430
   Posted 7/27/2007 9:33 PM (GMT -6)   
karasmommy said...
I treat my Lupus/Crohn's pretty naturally.  At this point the only meds I am taking are Plaq. and Flexeril as needed (I need to update my sig).  This is what kind of diet I basically follow:
 
I have been able to greatly reduce the inflamation in both my joints and GI tract by eliminating all forms of Wheat/gluten in my diet and also eliminating any form of suger (suger, honey, molasses, maple syrup, etc.)  Eliminating these has also enabled me to get off of Immuran (prescribed for the Crohn's mainly) and not have any flares for the past 4 months.
 
I also have incorporated naturally cultured foods into my diet in great amounts (plain homeade yogurt, kefir, miso, tempeh, veggies, ect).  This has cleared up my digestion wonderfully - really has made a difference with the Crohn's.  These foods are high in probiotics. 
 
I also take Fish Oil, cal/mag supplement and a daily vitamin along with a Probiotic daily.  I also aim to eat as organically (veggies) and hormone free chicken, and lots of wild fish.  I can't handle beef in any form.
 
I have not been able to get off the the Plaq. I am exhausted and in severe muscle pain when I do.  I have tried a few times.  But I feel this drug is better for me than the horrible side effects that I got with being on Immuran (non-stop yeast infections all the time!!!)
 
Jen - I know you were having problems with this and took yourself off.  I can only take the name brand or else I itch. I have never taken an anti-depressent with it - so I don't think that everyone that takes Plaq. must take one.   But that is just my thoughts!!
 
I still have bad days where I am just exhausted, but the joint pain doesn't nearly get as bad as it used to, now I have a few days that are bad every month. 
 
I think that there are things that work great for some but not for others - for me I have learned over the past 5 years what works exactly for me.  It has taken time, research, and all those good things to figure it out.

Hi, it sounds like you've done a lot of trial and error and found a great formula for you.
Eliminating sugar is a great step, especially since you were getting a lot of yeast infections. Check out the book "The Yeast Connection". Gluten is also a real issue.
Have you ever tried any digestive enzymes? They work wonders also.
L Glutamine also works wonders for Crohn's.
Funny thay you talked about hormone free chicken. I only eat chicken (no other meat) and realized I may be estrogen dominant and need to watch what I eat.
The plaq was terrible for me, and you're right, for some it does work. I guess I was terrified by how sick it made me. I am happy it works for you.
 
You are on the right track.........thanks for the input, I'm going to look into hormone free chicken
 
Be well :-)
 
Jen

NikkiETHS
New Member


Date Joined Jul 2007
Total Posts : 2
   Posted Today 7:52 PM (GMT -6)   
Hi Jen,
The doctor's took her off all her meds because she no longer needs them.  The only thing she takes is hormone replacement, thyroid, and the Thymic Factors in conjunction with the vitamins.  Her doctor has basically told her she is in sort of like a remission but to still be careful.  I am not claiming she has been cured but she is a completely different person now.  She does still have "off" days and gets tired if she has done too much, but if you don't know her you couldn't tell.  Also, she excercises frequently and eats a lot of fresh veggies and lean protein.  She stays away from anything white, processed, enriched and has replaced them with whole grains.  She also drinks water by the gallons and has done acccupuncture/massage as well.  Her life style has completely changed. 
 
Keep the Hope!
 
Love, Peace and Hair Grease
Nikki

karasmommy
Veteran Member


Date Joined Mar 2005
Total Posts : 589
   Posted 7/30/2007 9:13 AM (GMT -6)   

Jenn - yes the suger can be a great source of feeding your "bad yeast"  I have been following the candida diet for YEARS (at least almost 6+).  Didn't matter how much more I cut back my natural forms of suger (i.e. fruit, some high carb veggies, gf flours, etc) I still got yeast infections.  Couldn't fight them even naturally until I went off the Immuran.   My GI gave his blessing for trying to live without it and I have not had a yeast infection since I went off - so it is nice to be able to eat more fruit, etc than I normally did. 

For me gluten will give me hives and make me run to the bathroom - i.e. it upsets the Crohn's majorly.  The "Body Ecology Diet" goes into even greater detail of yeast infections, overgrowth, etc. - that is where I got most of my information years ago.  I had food allergy tests done by my ND and it proved all the foods that I thought were bothering me were.  Also put more on the list that I didn't suspect or couldn't put the trigger food as to what was bothering me exactly.

I use Bromelien as a digestive aid when needed and L-Glutamine in and Slippery Elm Tea when needed for flares for the Crohn's.  I also get a myofacial massage every 3 weeks to help out with the Fibro.

My hubby tells me I am completely "green", but hey it works, I was able to drop 3 meds (which cost me about $300 a month). Have also been able to start excersing for the first time in a year or so - I walk and bike. 

Knock on wood it will keep me in remission. 

 

 


Ellen
Diagnosed with Lupus - April 2002
Diagnosed with Crohn's Disease - January 2003 (problems since early 1990)
Fibromyalgia 2005 
Meds:  Lunesta 2mg, Flexeril 10mg as needed, Plaquenil 200mg, Probiotics, Multi-vitamin, fish oil
Off Immuran as of April 1st and doing well!!
 


CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 7/30/2007 9:28 AM (GMT -6)   
I meditate as often as possible to stay on my rocker (mentally stable) and to concentrate on energy healing. Usually works well. I tried herbs, etc. and have had mixed results. I do a lot of reading on herbal medicine but it is a lot to decipher. I don't care for standard medication but at times need to find a quick fix. I would love to learn Reiki and wish I could find a good herbalist. Good luck on your quest - Kristin
 
  Dx:  Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurg, dementia; GERD; vision loss, narcolepsy, rheumatic arthritis, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 

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