arthritis/auto-imune

September 5, 2002

I was wondering if anyone knows how well Lyme Arthritis responds to antibiotics?

I don't notice any improvement, actually seems a little worse. I've got

arthritis in my knees and hips, and sometimes have problems with my feet,

ankles, knuckles, oh alright all my joints basically. Never leaves my hips and

knees though. I'm not talking about joint pain, although I have that too, but

stiffness and sharp pain when I try range of motion. Anti-inflamtories like

aspirin, motrin, celebrex help the joint pain and stiffness. I'll be seeing a

new rheumy to be sure it's from the Lyme.

Which brings me to the second part of my question. I have a realy high ANA,

which is why maybe they weren't thinking lyme. I got bit for sure, rash and all

13 years ago. Now I'm testing + on Western Blot IGg and . IGm Wester Blot

gives false positives for people with + ANAs, but IGg doesn't that I know of. I

also tested positive for re-activated Epstein Barre. It's as though my imune

system is over-reacting to old infections. Maybe people with over-active

auto-imune suseptibilities just keep re-acting to the bacteria, dead or alive?

Debbie

---------------------------------

September 5, 2002

In a message dated 09/05/2002 7:21:19 PM Eastern Daylight Time,

pixx6@... writes:

> I was wondering if anyone knows how well Lyme Arthritis responds to

> antibiotics? I don't notice any improvement, actually seems a little

> worse. I've got arthritis in my knees and hips, and sometimes have

> problems with my feet, ankles, knuckles, oh alright all my joints

> basically. Never leaves my hips and knees though.

I have the exact same problems...with the joints. All my other major

symptoms decreased on long term antibiotics, but the joints stayed about the

same, and i've been off the IV antibiotics for almost 2 years now. The

joints still drive me nuts, especially the knees and hips. My LLMD told me

the joint effects of lyme can take up to 10 years to reverse and go

away...depending on how much damage was done. The only positive with all

this is that there is no joint destruction occurring, as with other forms of

arthritis.

Anti-inflamatory drugs also do not do much for me. The stiffness is very

bad in the morning...i cannot close my hand into a fist for about an hour

after getting up. WHen i try the finger joints feel like they are going to

pop.

WHen i first became sick, i had severe swelling in the joints, esp my ankles

and feet. THey were so swollen i could not wear a closed shoe for almost 3

months...had to wear open sandels. The other joints were also badly swollen,

but the lower leg and feet were outrageous. And the pain in the joints was

incredible. Walking was near impossible without having my ankles tape

strapped. The only thing that helped my joints in the beginning was high

dose steriods...this was about 6 - 7 years BEFORE i was diagnosed with lyme.

I was on them off and on for the first 3 years. That brought down the

swelling and gave me the only relief from the pain. I was originally

diagnosed with sarcoid arthritis, and i needed the steriods to bring down the

severe swelling before irrevocable joint damage occured. It must of worked,

no joint damage so far. Years later the joints flared again, and this time i

was diagnosed with the lyme.

With the high ANA you reported, yu just might have another form of

arthritis aside from the lyme involvement. Good that you are having that

checked out. No law that says you cant have two different things going on

with your joints at the same time, like it seems i did. SO i am glad you are

checking that out.

Good luck

Skip

September 5, 2002

> IGm WesterN Blot gives false positives for people with + ANAs, but

>IGg doesn't that I know of.

This seems awfully ungodly suspicious to me. I think having MS is

supposed to put you at risk for " false positives " too. RA and MS

have no known causes but the same symptoms can be caused by lyme.???

Anyone on this list had high ANA and improved on treatment?

Antibiotics can make symptoms worse for quite a while. My

arthritis/myalgia symptoms increased when I started ABX, but have

improved eventually over last 14 months or so. I'd cast my vote for

active infection causing your symptoms, and die off making them

worse. I probably missed this in previous post, but how long have

you been sick and on ABX?.

E.

September 5, 2002

I am really leary about posting this, but it may explain something.

Unfortunately I have not been able to find the documentation that was once given

to me; believe it or not by a Vetranarian. Many people also take offence when I

say this...

Back in the 1950's there was evidence that people with MS had some kind of

unidentified spirochete bacterial infection... but it was ultimately thrown out

the window...and ever since it has gone completely unaddressed.

Several years ago, I was part of a Lyme support group - I was using prodigy

before the Internet boom. I had mentioned this in a post, and began talking to

this vet who was studying Lyme & animals. He had sent me documentation

regarding the MS - spirochete connection...I am sure it is burried somewhere at

my mothers house, but I have not been able to find it. However, I have a

cousin, who was diagnosed for years as having MS. Upon my mothers insistance,

she persuaded him to seek Lyme treatment...his doc gave it a try. He went from

walking with a walker at age 38 to jogging 5 miles a day. He is definately Lyme

despite all of the " MS symptoms " . Another cousin of mine was diagnosed with MS

at the age of 6...and has been pumped so full of steriods, that at 25 he is in a

home, because his mother can no longer take care of him. He never had much of a

life. They all 20+ years ago lived in Toms River NJ - an endemic area, and were

bitten at one time or another.

I also remember reading a study, where there was a high concentration of both MS

and Lyme in one area. Those who participated, were treated with abx and most ms

patients responded as the LD patients did.

I am sorry -- I probably shouldn't even post this..But I will take the

chance...I was sparked by the statement about " MS puts you at risk for false

positives " ...I even met a woman once who tested positve for AIDS, when she

actually had Lyme...that was a scare

Anyway -- I will get on with looking for the documentation...I hope I have not

angered anyone with this...If so, i am very sorry

Re: [ ] arthritis/auto-imune

> IGm WesterN Blot gives false positives for people with + ANAs, but

>IGg doesn't that I know of.

This seems awfully ungodly suspicious to me. I think having MS is

supposed to put you at risk for " false positives " too. RA and MS

have no known causes but the same symptoms can be caused by lyme.???

Anyone on this list had high ANA and improved on treatment?

Antibiotics can make symptoms worse for quite a while. My

arthritis/myalgia symptoms increased when I started ABX, but have

improved eventually over last 14 months or so. I'd cast my vote for

active infection causing your symptoms, and die off making them

worse. I probably missed this in previous post, but how long have

you been sick and on ABX?.

E.

September 5, 2002

Skip: That's very interesting that you still have residual joint

pain. Obviously you don't think that it's due to continued lyme

infection. There are people that say arthritis is caused by

mycoplasma (road back foundation). Anyhow, you might want to look

into bee venom therapy. It has been used very successfully for

arthritis and myalgia of various sorts. It is said to be helpful

where you would use cortisone shots, but without the negative side

effects. You don't have much to lose. The pain of stinging is a

drop in the bucket compared to daily joint pain. I'll be glad to

point you in directions if you're interested.

E.

>I have the exact same problems...with the joints. All my other major

>symptoms decreased on long term antibiotics, but the joints stayed about the

>same, and i've been off the IV antibiotics for almost 2 years now.

September 6, 2002

Suggestion.....

Wobenzyme N, German anti-inflammatory, all natural from health food stores.

sue in nj

sue massie

September 6, 2002

In a message dated 9/6/02 3:29:51 AM, wyson@... writes:

<< Back in the 1950's there was evidence that people with MS had some kind of

unidentified spirochete bacterial infection... but it was ultimately thrown

out the window...and ever since it has gone completely unaddressed.

Several years ago, I was part of a Lyme support group - I was using prodigy

before the Internet boom. I had mentioned this in a post, and began talking

to this vet who was studying Lyme & animals. >>

-

You MIGHT be talking about a dear friend of mine, Dr. Marshall and I

DO have the documentation. If it is, here is some of it. This has touched me

personally too cuz my brother-in-law was dxd with MS in 1985 and when Dr.

Marshall contacted me in 1998, I RUSHED him to a LLMD and had him tested.

HIGHLY positive for lyme, babesia, ehrlichia. Was in a wheelchair.....

Many people are misdiagnosed every day. Without the CORRECT info, one would

just do what the dr. says because after all, they are " God-like " . This is

where you as the individual intelligent human being has the ability to do a

little research and see if you can find facts to confirm your diagnosis. Just

a suggestion because this is a VERY personal story to me; my brother-in-law

was misdiagnosed with MS in 1985 and JUST the summer of 1999, I insisted that

he be PROPERLY tested for lyme. He was almost in a wheelchair, and finally

saw my LLMD with HIGH positives on lyme, babesia, ehrlichia. Stuck with abx

for about 9mos and quit (after imrproving by walking w/out a cane!!!)

The following paragraph can be found at : www.cassia.org , then go to the

bottom and click on DIAGNOSTICS, then on the next page, click on " When to

Suspect Lyme Disease " , then go down about 30 paragraphs and you will see the

following.........

Many patients are told that they have Multiple Sclerosis (MS) because of

brain MRI findings or a spinal tap was positive for oligoclonal bands (OCB)

or myelin basic protein (MBP). The medical literature is quite emphatic that

MRI does not reliably distinguish between MS an LD because there is too much

overlap in their supposedly distinct appearance and location of plaques.

Plaques have been detected with both disorders in the brain and spinal cord.

OCB's and MBP are non-specific markers for demyelination (loss of sheath

around nerves) and do not signify a cause of the demyelination. In Miklossy's

study above, senile plaques stained avidly for Bb spirochetes.

Marshall reviewed the MD literature in Medical Hypothesis (Vol 25: 89-92,

1988) and advances the notion that LD is causing MS! His survey revealed that

multiple studies prior to 1951 were able to demonstrate spirochetes in the

spinal fluid of MS patients (by inoculation into animals and on silver stain

of CNS tissues). Dr. Coyle has documented the presence of antibodies to Bb in

MS patients (Neurology Vol. 39:760-763, 1989). The encephalopathy attributed

to MS is very reminiscent of LD. Both MS and LD are associated with sinusitis

(Lancet, 1986). Dr. Leigner has reported a case of LD which fulfilled all

criteria for MS. The epidemiology of MS and the geographic distribution

parallels that of LD. The symptoms of both LD and MS can be aggravated if the

patient takes a hot bath. Anecdotally, patients with LD, who previously had

been identified as MS, responded to antibiotic therapy.

sue in nj

sue massie

September 6, 2002

Hi,

I don't have a diagnosis, not because I haven't tried. Grew up in KY a non

Lyme State so I am told but was bitten by a tick when I was about 15 yrs.

old. I hate all kinds of bugs and when I tried to knock this bug off my knee

it didn't move and I screamed and discovered it was a tick, mother used

kerosene or something to get it to release it's hold. Didn't have the bull's

eye rash but did have a lot of rashes as a kid and can't remember if it was

after the tick bite.

A book wouldn't hold all my health experiences and the money that I have

spent. At 18 I had this horrible knee joint pain and stiffness (am now a

senior citizen) The pain was a burning pain and I am just now finding out

that I have neuropathy and there is nothing that I can do for the nerve

damage and can't take any of the pain meds, it is getting so bad now that I

can hardly walk. Have life long migraines and can only take only two

antibiotics, Amoxil and Augmentin. Have tried them all because of years of

middle ear and sinuses infections. Most all meds. give me a worse migraine.

Question: I have an appointment with a migraine specialist that I have seen

before and hope he will do a Lumber Puncture of Spinal Tap to see if the

spinal fluid is under too much pressure. I read about this on a migraine

list. My head feel like it is under pressure all the time, I can't fly

because of the added pressure on my brain I guess. If he will do this would

like to ask him to do some tests on the spinal fluid like for Lyme and other

things. Does anyone have any idea of what tests that I could ask for?

Thanks a Lot,

H.

September 6, 2002

All the previous responses to this post were valid, but I do think

the point about auto-immunity is possible. Autoimmune illnesses can

make you produce antibodies to just about anything. People

with 'chronic lyme' often produce antibodies against their own blood

vessels (anticardiolipin), even when they don't have high ANA. I

think my postitive test for Rocky mtn spotted fever is my body

producing antibodies to something that is not there any longer. I

don't know what my one positive Western Blot means--for now, I assume

it is lyme. Once you get a chronic illness your immune system can do

this. Anyway, that's why I think there are some 'false-positives',

even though there are also false-negatives, as many here will testify.

Kell

September 7, 2002

just a thought. I had a spinal tap done a few years back they wanted to see if

I had lyme disease. It was not my regular doctor and the insisted. The results

were negative and I do have lyme a very bad chronic case of lyme. My llmd

always says that trying to diagnos with a spinal tap is like trying to find a

needle in a haystack. The infected cells (or however I should work that) would

have to be traveling at that moment in that area for a positive test. Also have

you checked you oxygen levels regarding the headaches. I know some people that

their oxygen in their blood is not high enough and they need oxygen tanks to get

rid of the headaches.

These are just thoughts and suggestions, I am not an authority on this my any

means

good luck

[ ] Re: arthritis/auto-imune