posted
I was diagnosed back in July 2011 with Lyme disease after having the ckassic flu-loike symptoms and the bulls eye. Was tested IgG postive, IgM negative although one indicator was present. went on a 3-wk course of antibiotics and was ok. Also was diagnosed with Sjogren's Syndrome, an auto-immune disease which can cause joint pain. Was retested in August for Lyme and again IgG positive, IgM negative with 4 indicators present.
Now about 4 weeks ago, started feeling joint pain in every joint of my body, both sides, with the exception of my ankles and wrists. So stiff in the morning I can barely move. It gets better throughout the day as I move and walk around. Am on Relefen and Plaquinil but no relief. Just had another blood test which showed again IgG positive, IgM negative with 3 indicators present.
I don't know what to do next. I'm seeing a rheumatologist at the moment but think I should see an infectious disease doctor or Lyme specialist. Any ideas?
Posts: 5 | From Monroe Twp., NJ | Registered: Jun 2011
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Welcome to LymeNet!
So sorry you are feeling so dag-gum awful!
Since treatments you are getting aren't providing relief, perhaps you should try another doc and get a second opinion?
Here is a site that may be able to help you find a doctor in your area.
The Sjogren's Syndrome diagnosis is a typical Rheumy diagnosis. We find that label put on a number of Lyme patients.
As for seeking out an infectious disease doctor... this is MY opinion on that topic. (I can see TuTu & Goofy laughing now as they know what I am going to say.)
I'd rather shoot myself in the foot than go to a neurologist or rheumy for Lyme disease.
I'd rather shoot myself in both feet than go to an infectious disease doctor.
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by RINI1214: ...joint pain in every joint of my body, both sides, with the exception of my ankles and wrists. So stiff in the morning I can barely move.
I have a couple suggestions to help this, and you won't need to find a new doctor to do them. You can reduce the pain by reducing the inflammation.
First, take magnesium. Second, get a good fish oil, and take enough of it to make a difference.
Third, look into systemic enzyme therapy. This one is more expensive, but can be very effective. People seem to have a more difficult time wrapping their head around this one...it's complicated to explain, you'll need to google and read.
For fish oil, I suggest one with a high ratio of EPA, such as OmegaBrite. Country Life Omega 3 Mood also has a very high EPA ratio...I have tried the "store brand" of it from vitacost, and it did not work as well.
For magnesium, I like Source Naturals Ultra Mag, and Peter Gillham's Natural Calm. You can look up different brands at iHerb.com and see what people think of them.
Systemic enzymes have made the biggest difference for me. If I stop taking them, all the body pain and the headaches start coming back, and I'm miserable. You can google for research from Europe on Wobenzym and arthritis. It's also used for cancer.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
I second what Tincup said... I would stay away from rheumatologists and infectious disease specialists. Definitely seek out a Lyme Literate doctor. All the medications prescribed by rheumatologists simply suppress the immune system, allowing the Lyme to completely take over.
I spent 6 months with a rheumatologist before I was diagnosed with Lyme. The medications he gave me were like putting gasoline on a fire. I quickly went from having fairly minor symptoms to being bedbound, fighting for my life. All because of the immune suppressing drugs like prednisone and the chemotherapy drug Methotrexate.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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posted
thanks to you all for the input. I actually started going to the rheumatologist before I started having the Lyme symptoms and before finding the bullsey. I was having pain and stiffness in my hands only all last winter so finally saw the rheumatologist who treats my dad for his RA, thinking I probably had RA as well.
When I went back to see him two weeks ago, I told him how crappy I was feeling and the naproxen he gave me wasn't working. He then gave me a scrip for Relefan and Plaquinil, which don't seem to work either.
I have been taking fish oil for years - I take about 3000 mgs a day - it looks like a 30% ratio of Omega-3. Is that enough? I will look into the magnesium and enzymes. thanks. how much magnesium to you take each day?
Posts: 5 | From Monroe Twp., NJ | Registered: Jun 2011
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