Lyme and Lupus
I have been told for the past year that I have chronic Lyme disease. I have been treated with antibiotics and natural remedies, to the tune of thousands of dollars, only to find out that form further tests, that I most likely have Lupus and not Lymes. I'm beyond frustrated that 6 doctors couldn't figure out to test for all things first before asking me to pay so much money for treatment, that insurance did not cover. Now, they are acting like Lupus is no big deal and I can just take a pill. I refuse to take any drugs for this and will deal with it naturally.
Anyone else have a similar experience?
Lupus can be quite serious - please take your doctors' advice seriously. If you doubt the diagnosis, seek a second opinion - but don't ignore it.
While some supplements, lifestyle/diet changes, etc can sometimes help individuals, they cannot cure Lupus or even necessarily make it manageable, and make no mistake - Lupus can KILL YOU. If you really do have it, PLEASE work with a good Rheumatologist to treat it.
"None" is a big word - but I'd say almost NONE of us 'like' to take medications. Most of us HATE it. But most of us who have gone off of them end up wishing we hadn't when the disease eats up part of our body - natural methods or no.
I am a big believer in complimentary medicine, but I know first-hand that this disease - just like diabetes or cancer or epilepsy - is too serious for just one sort of approach. The internet promises a lot of "cures" or remissions with supplements, diets, etc - all I can say is please don't go for any of that without VERY CLOSE MONITORING by a competent Rheumatologist. Your life could depend on it! A good doc will discuss all options with you and help you explore your options in a safe way.
Also, many of the medications are relatively problem-free for lots of us.They make us feel a lot better, and though they're a pain in the rump, they're way better than Lupus. AND they're often covered by insurance. it may take a while to find the right ones for you, but they can be lifesavers.
I understand your frustration, but these things can be VERY difficult to diagnose, so also give your docs a little bit of a break. Talk to them, ask tough questions, and get good care.
Best of luck to you, and let us know how things work out!
Excellent post by Sleepy!
I would just like to add that Plaquenil is often the first drug that our docs start us on. It is relatively mild and is quite cheap, since it is an "old" drug.
My insurance pays for it and all I pay is $1.78! I wish that I could say that about other drugs that I use, like Restasis, which is quite expensive, even with insurance.
Many of us take supplements - my rheumy back in Texas was really big on fish oil, and I take that every day - even my dog takes it - but it is important to coordinate this with your doctor. Many of us have also had experience with Methotrexate, another old, reliable and inexpensive drug. It is very important that we take Folic acid with MTX, since the drug depletes folates in our bodies. Some natural supplements are very important parts of our treatment.
Originally Posted by supernjenn2012
There is no way to manage or control Lupus "naturally". There is no such thing as a so called natural treatment for lupus, a natural remedy, or a lupus diet.
Members of this website have loved ones who fell into the trap of refusing proven meds in favor of these so-called "natural remedies". One of those loved ones here, as well as many others outside of our group, have died because of this.
I hate to have to put it in such stark terms, but the fact is that meds such as Plaquenil, Prednisone, Naproxen, and many others are proven to be effective for many people in keeping lupus under control.
On the other hand, these bogus products advertised as effective natural treatments or alleged "cures" for Lupus are a worthless taker of money, and sometimes lives. Don't fall for them.
Welcome to WHL. As you can see, the folks here are very caring and knowledgeable. I can't add much more than what has already been said so well by the others.
I get how frustrated you are with the treatment you have received so far but Lupus is a real tricky one for doctors to figure out. Many of the people here have gone years before receiving the proper diagnosis. Now that you have it you can get treatment and start to feel better.
I see a naturopath who agrees that there is no natural treatment for lupus. She works to build a strong body to help support the treatment my rheumatologist prescribes. She suggests food and supplements that assists the meds AND tells me which foods and supplements to avoid.
I wish you well and hope to get to know you a little better.
I really can't add anything to what has been said but I did want to stress that you listen to the others. Lupus can usually be managed with Medicines but it can be deadly if left untreated
I'd just like to add that there are a few of us that were also diagnosed with Lyme's disease, only to find out after antibiotic treatments that there wasn't any change. Rather apparently, it wasn't Lyme's disease... It didn't take my doctor that long to figure out that I didn't have it. If you're not comfortable with your doctor(s), change them if you can.
I just came back from my primary care doctor who ran a Lyme Disease test which came back positive on the Rh factor; however, the break down of the test was negative across the board. She refuses to diagnose Lupus, and just keeps running tests. I have a daughter and granddaughter with Lupus (which was genetically checked and they have 3 out of 4 positive markers for inherited Lupus- it doesn't run on father's side). So I Know I have Lupus but cannot get diagnosed. She just wants to put me on antibiotics, which I don't feel comfortable doing....my Rheumi doctor appt is in July...can't wait.