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#15447 Nov 11 8:09 PM

Fortunately there is a lot of info about Lupus on the web. It is disheartening to me to see how much autoimmune disorders are on the rise. I wish they would focus more on finding the cause instead of a drug to treat the symptoms.

My mom has lupus and I have fibromyalgia so they get discussed quite a bit. While most of the research that I've done is about fibro vs Lupus or Lyme they have some similarities so I thought I'd share some things that have worked well for me.

Some things I can suggest as being helpful...

www.endfatigue.com is a website that is primarily for CFS/Fibro but the book is quite good and his supplements (energy B, end pain and sleep formulas) are really good and would work for any autoimmune issues. For some reason the B complex is easier to take than some of the others out there. I think the website looks a little cheesy but when he first started it didn't and there are quite a few drs. that are certified in his techniques with successful results.

One of the things that seems silly but is really effective is to switch to an organic diet. Almost all foods have organic options now, Safeway has tons, and almost all fruits, veggies and meats have organic or hormone free available. My personal opinion is that all the chemicals in our food are really hard on people with compromised immune systems. I should add that my hubby had a fit when we first switched because organic is so much more expensive but in the end it was less expensive because I stopped buying a lot of non-essential stuff and the actual cost evened out.

Walking for 20 minutes a day. Whether its on a treadmill, outside or doing laps around your house. It doesn't matter how fast you do it, slow is ok. For some reason after walking for 20 minutes releases good chemicals into your bloodstream, helps your muscles relax and actually energizes you.

It sounds so simple that it can't work but when I eat an organic well balanced diet, take my vitamins and use my treadmill I feel great about 80% off the time. I don't take any Rx for fibro, the only pain reliever I take is the occasional regular strength tylenol. I do work full time and originally they said they didn't think I would be able to continue to.

When I was first diagnosed they kept trying different drugs which caused some awful side effects and more symptoms which of course resulted in more drugs. Finally I decided the drugs were doing more damage than they were treating so I went off them. Should anyone decide to try that I should strongly warn you that you have to taper off most drugs very slowly or it can be a nightmare. It took me almost a year to taper off the lovely cocktail they had me on. As a result I am very skeptical about drugs. I do know I feel better off them than I did on them.

Lastly, with the Lupus diagnosis, if you haven't already gotten a second opinion I would do so. Lupus like the most others mentioned above is diagnosed based on symptoms and some elivated test levels, there isn't a specific test for it.

gin

Alaska







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#15451 Nov 11 8:42 PM

My daughter and I both were just diagnsed she is 40 and I am 60 Dr sayd she has Fibro and I have Lupus. But she is so much sicker than me it saddens me soo much. She does'nt sleep no matter what they gave her AmbienCR and nothing sometimes yes sometimes no. She is so exhausted, exhausted for no reason she can barely get to work and plops in bed when she gets home, the weekends come and shes in bed. Very sad!! I feel bad for the family and the kids no more warm home no home cookin no nothing she is just breathing. Thank You so much for your advice I will send it to her too. As for the Lupus and Sjogrens Sydrome I still have to learn lots. What the heck is going on? Our food maybe

Then they put me on Predisone I hear distroys the bones and then I take Fossamax to protect them and in the end I will probably die from liver disease LOLOLO Oh well!! Like I said I am my mothers daughter and I will fight this no matter what it takes. And I married to a scrooge he will not go for Organic, but too bad I will succeed in this. Thank you soo much again. I was very angry at first because the scrooge would'nt buy health insurance I never had it and now that he finally broke down the damage is done to my knees, the lungs, and my eyes too too much inflammation thru out the body for years I just don't want to go blind.

Thank You for listening and taking the time to write me. When the Dr first told me I broke down then I got this incredible energy I wanted to come home and bash him in the Kister hard with all my might loloollolo really if only I had made it to the Dr in time. But oh well!!! I will get better.

My Mothers daughter Evelyn

Fortunately there is a lot of info about Lupus on the web. It is disheartening to me to see how much autoimmune disorders are on the rise. I wish they would focus more on finding the cause instead of a drug to treat the symptoms.

My mom has lupus and I have fibromyalgia so they get discussed quite a bit. While most of the research that I've done is about fibro vs Lupus or Lyme they have some similarities so I thought I'd share some things that have worked well for me.

Some things I can suggest as being helpful...

www.endfatigue.com is a website that is primarily for CFS/Fibro but the book is quite good and his supplements (energy B, end pain and sleep formulas) are really good and would work for any autoimmune issues. For some reason the B complex is easier to take than some of the others out there. I think the website looks a little cheesy but when he first started it didn't and there are quite a few drs. that are certified in his techniques with successful results.

One of the things that seems silly but is really effective is to switch to an organic diet. Almost all foods have organic options now, Safeway has tons, and almost all fruits, veggies and meats have organic or hormone free available. My personal opinion is that all the chemicals in our food are really hard on people with compromised immune systems. I should add that my hubby had a fit when we first switched because organic is so much more expensive but in the end it was less expensive because I stopped buying a lot of non-essential stuff and the actual cost evened out.

Walking for 20 minutes a day. Whether its on a treadmill, outside or doing laps around your house. It doesn't matter how fast you do it, slow is ok. For some reason after walking for 20 minutes releases good chemicals into your bloodstream, helps your muscles relax and actually energizes you.

It sounds so simple that it can't work but when I eat an organic well balanced diet, take my vitamins and use my treadmill I feel great about 80% off the time. I don't take any Rx for fibro, the only pain reliever I take is the occasional regular strength tylenol. I do work full time and originally they said they didn't think I would be able to continue to.

When I was first diagnosed they kept trying different drugs which caused some awful side effects and more symptoms which of course resulted in more drugs. Finally I decided the drugs were doing more damage than they were treating so I went off them. Should anyone decide to try that I should strongly warn you that you have to taper off most drugs very slowly or it can be a nightmare. It took me almost a year to taper off the lovely cocktail they had me on. As a result I am very skeptical about drugs. I do know I feel better off them than I did on them.

Lastly, with the Lupus diagnosis, if you haven't already gotten a second opinion I would do so. Lupus like the most others mentioned above is diagnosed based on symptoms and some elivated test levels, there isn't a specific test for it.

gin

Alaska





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#15628 Nov 14 5:50 PM

An excerpt from ---Links-Are-Forbidden--- : (Please

read it! If you go to the site, at the end of the short list of

diagnoses is a link that will take you to a library of drs. articles

about many autoimmune illnesses actually being lyme)

The classic rash may only occur or have been seen in as few as 30% of

cases (many rashes in body hair and indiscreet areas go undetected).

Treatment in this early stage is critical. The Lyme Rash

If left untreated or treated insufficiently symptoms may creep into

ones life over weeks, months or even years. They wax and wane and may

even go into remission only to come out at a later date...even years

later.

With symptoms present, a negative lab result means very little as

they are very unreliable. Read here. The diagnosis, with today's

limitations in the lab, must be clinical.

Many Lyme patients were firstly diagnosed with other illnesses such

as Juvenile Arthritis, Rheumatoid Arthritis, Reactive Arthritis,

Infectious Arthritis, Osteoarthritis, Fibromyalgia, Raynaud's

Syndrome, Chronic Fatigue Syndrome, Interstitial Cystis,

Gastroesophageal Reflux Disease, Fifth Disease, Multiple Sclerosis,

scleroderma, lupus, early ALS, early Alzheimers Disease, crohn's

disease, m.ni.res syndrome, reynaud's syndrome, sjogren's syndrome,

irritable bowel syndrome, colitis, prostatitis, psychiatric disorders

(bipolar, depression, etc.), encephalitis, sleep disorders, thyroid

disease and various other illnesses. see Other Diseases and

Lyme...Relationship

If you have received one of these diagnoses please scroll down and

see if you recognize a broader range of symptoms.

If you are a doctor please re-examine these diagnoses, incorporating

Lyme in the differential diagnoses.

The one common thread with Lyme Disease is the number of systems

affected (brain, central nervous system, autonomic nervous system,

cardiovascular, digestive, respiratory, musco-skeletal, etc.) and

sometimes the hourly/daily/weekly/monthly changing of symptoms







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#15645 Nov 14 11:05 PM

Jan Thank you sooo much that was interesting and I will see tomorrow what my blood tests show this lyme are soo close to my symptoms and my daughters. Thanks again for taking the time for this your a sweety.

Evelyn

An excerpt from ---Links-Are-Forbidden--- : (Please

read it! If you go to the site, at the end of the short list of

diagnoses is a link that will take you to a library of drs. articles

about many autoimmune illnesses actually being lyme)

The classic rash may only occur or have been seen in as few as 30% of

cases (many rashes in body hair and indiscreet areas go undetected).

Treatment in this early stage is critical. The Lyme Rash

If left untreated or treated insufficiently symptoms may creep into

ones life over weeks, months or even years. They wax and wane and may

even go into remission only to come out at a later date...even years

later.

With symptoms present, a negative lab result means very little as

they are very unreliable. Read here. The diagnosis, with today's

limitations in the lab, must be clinical.

Many Lyme patients were firstly diagnosed with other illnesses such

as Juvenile Arthritis, Rheumatoid Arthritis, Reactive Arthritis,

Infectious Arthritis, Osteoarthritis, Fibromyalgia, Raynaud's

Syndrome, Chronic Fatigue Syndrome, Interstitial Cystis,

Gastroesophageal Reflux Disease, Fifth Disease, Multiple Sclerosis,

scleroderma, lupus, early ALS, early Alzheimers Disease, crohn's

disease, m.ni.res syndrome, reynaud's syndrome, sjogren's syndrome,

irritable bowel syndrome, colitis, prostatitis, psychiatric disorders

(bipolar, depression, etc.), encephalitis, sleep disorders, thyroid

disease and various other illnesses. see Other Diseases and

Lyme...Relationship

If you have received one of these diagnoses please scroll down and

see if you recognize a broader range of symptoms.

If you are a doctor please re-examine these diagnoses, incorporating

Lyme in the differential diagnoses.

The one common thread with Lyme Disease is the number of systems

affected (brain, central nervous system, autonomic nervous system,

cardiovascular, digestive, respiratory, musco-skeletal, etc.) and

sometimes the hourly/daily/weekly/monthly changing of symptoms.





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#15650 Nov 15 1:49 AM

Evelyn,

If you are going thru any standard insurance co's lab...well, they just

aren't adequate. I had the bull's eye rash, which only 30% get, and I

tested 4x's negative! I didn't know at the time of the rash about Lyme

disease. (See hilighted area of previous post, at bottom). IGeneX is

the lab of choice for most LLMD's (Lyme Literate MD's), especially those

who are leading the way. ---Links-Are-Forbidden--- you need to see a LLMD and don't rely on a dr's referral, go to

a Lyme source, either an organization or a Lyme support group. My PCP's

sent me to specialist after specialist collecting diagnoses. Here are a

couple of organizations:

---Links-Are-Forbidden--- ---Links-Are-Forbidden--- > go to the bottom of the

page for physician referral

---Links-Are-Forbidden--- at the top of the page

If you, or anybody else wants any info feel free to email and check out

my Yahoo 360* Blog, I have a lot of Lyme info on it.

jan


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