Re: Lyme's Disease or RA or both?

[Guest guest]

Yes, actually when I first went to the Dr. I thought I might have

Lyme. We live in an area where it is prevalent, and we had a horse

with it in the summer of '05. I didn't KNOW I'd been bitten, and

never saw the bullseye rash, but knew that you could miss those. I

did have the all-over flu-y feeling, and traveling joint pain, which

in the very beginning was not symmetrical.

I was tested for Lyme as well as Lupus & RA. I was negative for

Lyme, and have a negative RF, but positive Anti-CCP. If my symptoms

had continued to look more like Lyme, I would have pressed further in

that direction if the doc hadn't explored further. But my joint

problems became more symmetrical, and focused on the joints that are

more likely to be problematic in RA than Lyme. And I did start to

respond to RA drugs. So I think it's pretty clear in my case that it

_is_ RA, not Lyme.

I was kind of hoping it _was_ Lyme, beacuse I know that in a lot of

cases, Lyme can be cured with antibiotics if it doesn't get too far.

>

> Hi All,

>

> I'm new here and just wondered if anyone in the group, positively

diagnosed

> with RA or RA symptoms, has ever been tested for Lyme's Disease?

Lyme's

> Disease is known as " the great imitator " - mimicking a myriad of

diseases like MS,

> CFS, FM, RA, etc, and possibly even initiating autoimmune

responses. According

> to my Lyme's Literate MD, it's been quite well documented that RA

Factor can

> be elevated by Lyme's infection. Here is one study:

>

> http://ard.bmj.com/cgi/content/full/58/12/757

>

> " Increased IgA rheumatoid factor and VH1 associated cross reactive

idiotype

> expression in patients with Lyme arthritis and neuroborreliosis. "

>

> I'm asking because this is what appears to have happened in my

case. I live

> in New England where tics and Lyme's Disease are very common.

However, it is

> becoming increasingly clear that people throughout the US are being

exposed to

> this increasing health threat, either through traveling to areas

known to have

> a high incidence of Lyme's, or because the incidence of Lyme's is

increasing

> in their own state.

>

> In my case, I started with a severely stiff, sore neck over Labor

Day

> weekend. Shortly after, I noticed a rash that looked like a cluster

of bites on my

> abdomen. It wasn't your typical bulls-eye rash, so I just thought

I'd been

> bitten by something, but I wasn't too worried. Within 2 weeks the

rash was

> diminished, but I then started with what felt like tendonitis in my

left arm, so

> painful I couldn't raise my arm and had to rest it on a pillow at

night. The next

> day, it was gone, but the pain had migrated to my left wrist. Next

day, it was

> in my other wrist, then the fingers and then my upper right arm.

This

> debilitating, migrating pain went on for weeks and eventually moved

to one side of my

> jaw and then the other...then, my lower body - my left knee, the

arch of my

> right foot, and so on. I also started with swollen neck glands and

crushing

> fatigue.

>

> After a second visit and insisting that I may have Lyme's, my

Internal Med

> doc finally treated me with the standard 3 weeks of doxycycline,

but by this

> time, I was wracked with pain everywhere and it was too little, too

late. If

> treated at the rash stage, I might have been okay, but he was

waiting for my

> bloodwork to return and my Lyme's test came back negative. It was

only later, after

> much research, that I learned that the standard Lyme's test (the

ELISA test)

> is notoriously inaccurate and misses about 70% of people infected

with Lyme's.

> The diagnosis of Lyme's must therefore be based on a clinical

diagnosis alone

> (rash, stiff neck, raised temp, general malaise, migrating pain,

etc).

>

> He then did more bloodwork on me and found that my RA Factor was

elevated to

> 157...two weeks later it was 225. Since early Oct, I have been

virtually

> incapacitated and housebound, unable to navigate stairs, brush my

hair and teeth,

> or get dressed without help. My ankles swell up like balloons, if I

stand on

> them for longer than 15 mins or so.

>

> Fortunately, I joined a Lyme's support group on groups and

discovered

> that my story was not unusual and was helped to locate a Lyme's

Literate doc in

> my area. Since early December, he's been treating me with high dose

> antibiotics and has just introduced Plaquenil, which is known to

kill the cyst form of

> the Lyme's bacteria while helping to reduce inflammation. As this

group knows

> well, it is also used as a DMARD for RA, so I figure that if I do

have RA - an

> autoimmune response to the Lyme's infection - then it will 'kill

two birds

> with one stone', so to speak.

>

> I've read some other research that suggests that RA may be

triggered by an

> infectious agent...viral or bacterial...so why not Lyme's? Trouble

is, with two

> very possible diagnoses (RA and Lyme's), my Lyme's doc has advised

against the

> use of steroids or any RA drug that may suppress the immune system,

as this

> would only allow the bacteria free reign to wreak more havoc within

my body. Of

> course, the whole idea of RA treatment is to suppress an overactive

immune

> system that is attacking the joints! So, the usual RA treatments

aren't really

> a viable option for me, right now.

>

> Dr Mercola's website advocates Dr Brown's protocol for the

treatment of RA

> with antibiotics, so I figure this is a good alternative, as well,

to treat both

> until we're sure the Lyme's is well under control. All in all, in

spite of

> the horrendous pain, stiffness and swelling, I've opted not to see

a

> rheumatologist just yet, as I didn't want to confuse the issue with

another doctor's

> conflicting protocol. I've been slowly improving on the antibiotic

treatment since

> Christmas and, after starting the Plaquenil last week, I've noticed

less of

> that feeling of 'internal fire' - inflammation and fatigue.

>

> So, after that long-winded explanation....just wondering if anyone

else has

> suspected Lyme's or some other infectious agent as the culprit of

their RA, or

> other autoimmune disorder, and also if they've tried the antibiotic

protocol

> for their RA? If so, what were your results?

>

> Thanks for reading and allowing me to share in this group!

>

> Peace, n

>

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