For Elisabeth - Re: Lyme's Disease or RA or both?:

[Guest guest]

Dear beth,

>>>I had definite case of Lyme before I was diagnosed with RA, if you are

having joint pain it is pretty far along. My blood tested positive with ELISA

and

WESTERN BLOT (and for the person whose husband had a bullseye rash, that is a

pretty definite sign) after which I took two rounds of oral antibiotics, and

later with a spinal tap, after which I took IV antibiotics.<<<

Many thanks for your email response to my questions - really appreciated!

I'll cut and paste and reply bit-by-bit below...

>>>One thing to remember with LYme, once you have the disease your blood will

always test positive for antibodies, as told to me by the LYME DISEASE CLINIC

at Stonyy Brook University.<<<

Yes, this is true, if you're fortunate enough to get a positive Lyme titre

even without a Bulls Eye rash. Patients are then taken much more seriously by

the medical establishment and treatment isn't in question. However, it seems

that a good proportion of people never do test positive for Lyme's or even get

tested for possible co-infections until they are in the chronic stages. I have a

friend who went for one year being shuffled from specialist to specialist,

because her Lyme's test kept returning negative. Her story is pretty common. She

had all kinds of neurological symptoms amongst others (shooting pains in her

limbs, numbness, tingling, heat in the balls of her feet, etc), including

Bell's Palsy, and thought she was going mad (she was even sent to a

psychologist!)

until one doc recognized what was going on and got her treated. She had every

test known to man...but no definitive answers until this one astute doc

spotted the signs. Two months on antibiotics turned everything around for her,

but

she was one of the lucky ones. After one year of infection, it can takes a lot

longer for treatment to be so effective.

I've also learned that the Lyme's bacteria, a spirochete (spiral-shaped), has

the capability of collapsing in on itself and morphs into a dormant cyst form

that hides out in the blood cells. This is why some people get recurring

attacks later down the line when the immune system is compromised somehow.

Everyone seems to be affected differently, too, which further confuses things.

Some

people get chronic arthralgias and myalgias, some neurological symptoms - there

is a list a mile long of the various ways it can affect people.

>>>please be careful before going many rounds of antibiotics, look up

research on the web for both sides of the story, long term antibiotic use is

hotly

debated, and there can be some debilitating problems due to the drugs<<<

This is good advice and often the explanation given by docs as to why they

won't treat longer than the standard 3 or 4 weeks. However, what doesn't make

sense to many Lyme's sufferers is that teens are put on doxycycline, often up to

a year or more, for cystic acne. Something is definitely awry here with this

reasoning. Also, what a lot of people don't know is that a good way to

counteract the side-effects of antibiotics is to take a high quality pro-biotic

like

PB-8, easily purchased at vitamin stores.

Alas, the thought of a lifetime of taking RA drugs is just as daunting, if

not more so, for me. It seems that most of these drugs disable the immune

system, leaving patients open to all kinds of infection, as well as possible

major

organ failure. The lesser side-effects of RA drugs are also a concern, too. My

brother has chronic progressive MS and after taking steroids and injecting

interferons for 2 years that left him with debilitating flu symptoms for a

couple

of days after each shot, he discovered his liver had been damaged. As a

result, he opted for quality of life and now doesn't take any drugs, preferring

to

just let his MS progress as it will. In his words, he said, " I'm damned if I

do take them and damned if I don't " .

When I spoke with my Lyme's doc I mentioned the possibility of RA, which he

didn't dismiss, saying it may have been triggered by the Lyme's as it was with

you. However, when I mentioned my fear of taking RA drugs to suppress my

immune system, he said he didn't blame me and he would feel that way, too. He

added

that the rheumatology field is " archaic " and it's been known to take a good

30 years (a full generation of MDs) to actually consider rethinking

methodologies for treatment based on clinical studies. It's like RA sufferers

have no

choice, but to face the toxicity of these drugs or suffer long term pain and

disability.

I'm really of two minds about all this and so I decided to give my Lyme's

doc's treatment a good try, first, before seeing a rheumatolgist in spite of my

high RA Factor. I'm finding that my pain and swelling is diminishing very

slowly and I'm finally seeing a crack of light at the end of the tunnel. I don't

want to be in denial about possibly having RA, either, so when I finish his

treatment, if my joint problems return, I will go to a rheumatologist....but

even

then I will probably take the path of least toxicity. LOL

>>>(for example, some say that a worsening of symptoms means antibiotics are

working, and others say that is because the antibiotics are doing other things

to your body, its a mess!).<<<

This is also very true - it's called a " Jarisch Herxheimer Reaction " and is

well-documented as being the result of toxins being released by the dying off

of the Lyme's bacteria. It occurs with other diseases that are treated by

antibiotics, as well, including syphilis, which is also a spirochetal bacterium.

I've had a few of these " Herx " reactions when starting the antibiotic or upping

my dose. The reaction causes a worsening of symptoms that usually lasts for 24

or 48 hours and then you feel improvement in the days following.

>>>I later was diagnosed with RA, but my symptoms were different. My pain was

more symetrical and I had anemia. I should say I never had high Rheumatoid

factor or other RA antibodies, I am a case that is pretty much diagnosed by

symptoms alone. But after my IV antibiotics I didn't have the same numbness or

foggy brain as I had. ANyway, I do think my RA was spurred by Lyme. <<<

beth - thanks for confirming your feeling to me that you think your RA

was spurred by Lyme's. It seems we have something in common with this. Also,

really glad you were able to get timely treatment to get rid of your Lyme's. I'm

no MD, but you should feel confident, because your RA meds are helping and

you haven't experienced any worsening of Lyme's symptoms. I wish it was as

clear-cut for me - listening to all the stories of people's side-effects from RA

drugs is enough to spook anyone.

Peace, n