Re: Lymes Disease & Lupus from Sharon

[Guest guest]

Sharon, If your Rheumy won't communicate, you do it for her/him. Get copies of your file from the

Rheumy's office and send them or take them to your primary doctor. Have any tests copied and sent

to the primary doc, too. That way, the primary care doctor is aware of what is going on with you,

what meds and tests have been tried, and so forth. I started doing that when one of my doctors

refused to share information, and I did it both ways. I sent copies of what the PCP did to the specialists, and copies of what the specialists did to the PCP. Well, you should have seen that Internist's face the next time I saw him. He was so embarrassed to find out that I had already been

through more medication trials than he had ever seen in one patient, and that I had been telling him

the truth about all that all along. He is now a good friend, and a much better doctor. Sometimes,

you just have to show them that, contrary to what they were taught in med school, they are not

gods. LOL

I am glad you found us, honey. Now, write and ask questions, share fears and feelings, vent, whine

(We offer cheese with that.), joke, cry...whatever it takes to get you through. We are all at one

level or another of pain, fatigue, and suffering with this disease bundle we call Lupus, and we do

understand where your family and friends may not be able to get it. Writing to the group, reading

posts, and staying in touch help us all to fight a better fight, and to keep our spirits as high as

possible. Again, welcome. Hugs, MM aka: Mike, one of the moderators

[Guest guest]

Sharon, I have chronic Lyme Disease because it took six years to get a dx on it. That was back in

the days when California docs were denying its existence. I was already dx'd with RA, Fibro, and

was Lupus "suspect" for some years before the ticks got my ankles, so it never occured to anybody

that there was a new kid on the block.

First, let me ask you a few questions, 'k? Did you see the tick? Did you take it in to be tested?

Did you have the bullseye rash at the bite site? Did you have strong flu-like symptoms within ten days of the bite that lasted for a week or two? Did you get significantly better from that "flu", and

then weeks, months, or even a year later suffer a complete relapse?

Now, then, how Lyme's and Lupus interact...For me, and that is the only experience I have with this

combination of diseases, Lyme's and Lupus imitate each other to a fairly well. Lyme's can cause

joint pain without joint damage, fevers, severe headaches, memory loss, heart and lung complications

and extreme fatigue. Sound familiar? However, with antibiotic treatment of Lyme's, while these

symptoms may initially worsen slightly, improvement is noticable and rapid as the spirochete bacteria

are destroyed. In my case, since I had the disease for six years before treatment with antibiotics,

I have recurring flare ups which I can tell from Lupus flares by the nature of the fevers, the kind of

pain and type of memory loss. It's different, but the differences are subtle and I have had almost 15

years of experience with it. I hope you don't have to gain that much experience with it. Hopefully,

your tick bite was more recent, and antibiotic treatment can cure the Lyme's. If it's caught within

six weeks of the bite date, it can be cured. If not, there is a chance of recurrence.

I have never had Lupus flare from using antibiotics for an infection. I have had Lupus flares from

leaving infections untreated. I am allergic to many antibiotics, but when we find one I can tolerate

and that works, I keep a supply at home for Lyme's flare ups, and I'm very careful about its use.

Since, like Lupus, the Lyme's tests are still not entirely reliable, I would ask that you go with the best

two out of three results, as they did with me. I was positive/negative/positive, so they treated it.

Do not go on the basis of one blood test unless you KNOW you had a tick bite. Then, get on the

treatment asap to avoid it turning chronic.

That's the best advice I can give. Hope it is helpful. Hugs, and keep us posted, MM

[Guest guest]

Sharon, I have no experience on having both or one affecting the other. I

tried looking for some articles or other resources that could give you some

idea on how Lyme affects Lupus but wasn't able to find anything yet. I'll

keep trying and will post it if I come across something.

I hope someone else is able to give you some more information, in the

meantime hang in there.

Mojo

Lymes Disease & Lupus from Sharon

> Hi everyone,

> I too have been lurking around. I've only posted once. I've had lupus

> for about 20yr. now. I've had my ups and downs. No serious organ

> involvement yet. Thank God.

> My family doctor says I have lymes disease. I have apt. with

> Infectious Disease doctor the 4th. I know a lot about lymes as I

> worked with my family doctor for 10yrs. and she has a lot of lymes

> patients, but none with lupus. I know you can get false positive

> results when you have lupus. (Dr.Fletcher) says I need to go on

> I.V. antibiotics for 6wk. but I really do not want to do that,

> because it can cause a really bad flare. I feel bad enough now, I

> don't need to feel worse. She also says I have EBV,CMV,Mycoplasma

> Pneu., low magnesium and vitamin D. I've been on prednisone 10mg but

> I am trying to decrease it. It's hard to tell if my joint pains,

> fatigue and brain fog are from decreasing prednisone or a flare. My

> ANA is down from 1280 to 640. Also the headaches are back with a

> vengence. I have them everyday.

> My Rheumy. will not communicate with my family doctor. She thinks she

> is just searching.

> I have really learned a lot from you guys. You all are great.

>

> Hope everyone has a restful night.

>

> Sharon M.

>

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>

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