posted
I have been treated for the last year as having polymalgia. In the past six months I have become short of breath" my joints kill, hands are swollen, have developed horrible GERD resulting in Barrett's esophagus and hiatal hernia. Going up stairs often feels like climbing Everest. I wake up each day wondering which body part is going to hurt the most.The new rheumatologist I'm seeing doesnt believe it's polymalgia and giant cell arthritis at this point. He is actively trying to help and I've had tons of tests. Together we have been trying to reduce the 20 mg of prednisone that I have been on for over a year. Every time I start going lower the pain becomes horrible. Several friends have suggested I look into Chronic Lyme as a possibility. Having spent a lot of time on the Cape and the outdoors it seems a strong possibility. I was bitten and had the bullseye about 10 years ago. The test came back negative but I had been started on the antibiotics and finished them. I would love to know some names of doctors so I can start dealing with the possibility of Lyme. Thanks for your help and sorry it was so long a note!
Posts: 1 | From Boston massachusetts | Registered: Oct 2017
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Breaking up the above post so all can read it:
I have been treated for the last year as having polymalgia.
In the past six months I have become short of breath" my joints kill, hands are swollen, have developed horrible GERD resulting in Barrett's esophagus and hiatal hernia.
Going up stairs often feels like climbing Everest. I wake up each day wondering which body part is going to hurt the most.
The new rheumatologist I'm seeing doesnt believe it's polymalgia and giant cell arthritis at this point. He is actively trying to help and I've had tons of tests.
Together we have been trying to reduce the 20 mg of prednisone that I have been on for over a year. Every time I start going lower the pain becomes horrible.
Several friends have suggested I look into Chronic Lyme as a possibility. Having spent a lot of time on the Cape and the outdoors it seems a strong possibility.
I was bitten and had the bullseye about 10 years ago. The test came back negative but I had been started on the antibiotics and finished them.
I would love to know some names of doctors so I can start dealing with the possibility of Lyme. Thanks for your help and sorry it was so long a note!
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Hi, Jujub. Until others from your area come around with names of docs, I suggest you contact the lyme support groups near you.
See Support Groups on the left side of the page. Contact all of them in your state and in surrounding states. Find out who is getting people well from lyme disease.
If it turns out that the most successful doctor is not in Boston, be willing to travel to get to a doc who is curing people.
Also, it really pays to educate yourself on this disease. The best document you can read is the Burrascano Guidelines found here:
As you will see, lyme diease is actually a number of diseases. That is one reason why it is so complex to treat and so difficult to cure.
Your symptom of shortness of breath is the classic symptom of babesiosis. Babesiosis is almost always found in patients who have lyme.
See p. 23 where Burrascano calls this "air hunger." It feels like you can't get enough air when you have babesiosis.
GERD can be a symptom of bartonella. This is another very common coinfection of lyme disease. Nearly all lyme patients have all 3 diseases.
See page 24 where, it says about bartonella: "Other key symptoms may include gastritis, lower abdominal pain (mesenteric adenitis), . . ." Symptoms of gastritis are similar to the symptoms of GERD, so it may turn out that you really have gastritis from bartonella.
Each of these diseases requires treatment with different medications, so you can see the complexity of having to treat 3 separate diseases.
By educating yourself about lyme and its coinfections, you will be able to evaluate any treatment a doctor gives you for lyme. Don't stay with any doctor whose treatment doesn't line up with the Burrascano Guidelines.
The Burrascano protocol is what got me well. And, so I sent 5 of my friends to docs who followed Burrascano. They also got well. That is why I believe in the Burrascano protocol. Also, I had undiagnosed lyme disease for at least 10 years just like you. Still, with a great doc, I got well. (But, I didn't make much progress with the 2 rather lousy docs I went to at first. I wasted 2 years with such docs, taking their antibiotics.)
The most knowledgeable lyme doctors are those whose medical practice is 100% lyme disease. They treat so many patients on a daily basis that they develop expertise in how to treat all of these diseases.
I hope you can find such a doctor nearby. But, it is extremely common for lyme patients to have to go out of state for their care. At least half of all lyme patients go out of state. So, be open to that. Often, lyme specialists will do monthly telephone appointments with their out of state patients, so you don't have to travel every month to see the doc in person.
Also, there is almost always a wait to see the best lyme doctors because they are in such demand. So, many people start out with a lesser doctor while they wait for the lyme specialist they really want to see.
So glad you are looking into lyme disease. An accurate diagnosis is the first step toward getting well.
Be sure to ask around a whole lot before laying out a lot of money to see a good lyme specialist. Study the doctor's website, get recommendations from many people, and ask here on LymeNet about what others think of any doc you are seriously considering.
You may want to go to a lyme support group meeting and ask about doctors. And, if one is having a lyme doctor as a speaker, that is a great opportunity to learn.
Welcome to LymeNet! We will help you here all we can.
Posts: 9931 | From Maryland | Registered: Dec 2007
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You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Page 12 of the Burrascano Guidelines discusses steroids:
"More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection.
Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course.
If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants."
Unfortunately, LLMDs are far and few between. You need to go where they are.
Also, most LLMDs do not take insurance due to the politics surrounding this disease. Read poster TF's explanation about this:
Read the books written by the top LLMD, Dr. H, titled, "Why Can't I Get Better?" and his new one, "How Can I Get Better?". They are an excellent source of information.
Also "Cure Unknown" by Pamela Weintraub. Check your local library or buy it used on Amazon.
Btw - I know you are new to Lymenet, but please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.
To do this click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
Posts: 8981 | From Illinois | Registered: May 2006
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