This is topic Newely Diagnosed in forum Medical Questions at LymeNet Flash.


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Posted by Kln (Member # 19070) on :
 
2 wks ago was tested for RA, was positive. Tested for lymes to rule it out, got test results back today.

Tested positive for Lymes.(Late stage).

Have appt. for tomorrow.

Wondering what to expect and ideas on how long treatment will last.

Thanks for any help
kaye
 
Posted by Leelee (Member # 19112) on :
 
Hi Kin,

I think a lot of what you can expect in terms of treatment depends on what kind of doctor you are seeing.

An LLMD will probably start you on an antibiotic or a combination of antibiotics and keep you on them for several months or longer. Most other kinds of doctors may give you two to four weeks of Doxycline and that's it. That protocol will not be nearly enough to effectively treat the Lyme.

Another factor in your treatment process is how well your body responds to the antibiotics.

Do you know which bands were positive on your Western Blot? Also, do you know which lab performed the test?

You may have already been tested for co-infections, but if not, I would strongly suggest that you do so.

Best of luck,

Leelee
 
Posted by Kln (Member # 19070) on :
 
Hi Leelee

No, I have no idea which bands were positive, the lab, I assume was Labcorp which is the one the office uses. (Family doctor, GP)

I was told by phone this afternoon that I did test positive for Lymes and needed to come in for consult and treatment.

That will be 3p.m. tomorrow, i will get a copy of my results and treatment plan.

The reason I finally went to the doctor is I have nerve problems with my legs, which were getting worse, causing pain and making sleep near impossible. I now sleep in a recliner..which isn't great on married life!

They tested for RA amoung other things and with a positive RA result, we chose to rule out Lymes before starting treatment for RA.

Last year was Dx'd with Dupuytren's Contracture which is also an autoimmune disease like RA but causes scar tissue to build up on tendons in the had forcing the fingers to curl inward into fists.

I am now wondering how treament will affect DC and how will I know if RA is not also part of my problem along with Lymes... sigh

All of this without insurance!
 
Posted by Leelee (Member # 19112) on :
 
Oh Kin,

I am so sorry for all of your health issues. Just one of these diseases would be one too many, but you are possibly facing three of them.

If you truly have Lyme and you begin abx treatment you may see significant improvement over time with your pain. I hope that is the case.

My father had Dupuytren's Contracture when he was in his early 50's. I can't remember the specifics, but I think he was helped somewhat by a surgery. I had never before nor never since heard of that disease until you mentioned it. I have no idea if it is associated with Lyme or not, but nothing would surprise me.

It might be a good idea to get a copy of your test results for Lyme. Many of us have found it helpful to keep that sort of thing for future reference and doctor visits down the road.
 
Posted by 22dreams (Member # 17846) on :
 
There are Hundreds of conditions that lyme

disease can mimic.

No 2 patients are alike, however, a common

misdiagnosis for the arthritic strains of lyme

disease is Rheumatoid Arthritis.


to see 300 conditions that are lyme disease mimics- click here

It's a lucky thing you tested positive because

various treatments for other ailments can

exacerbate pain and cause marked decline in

health in lyme patients (i.e. Steriods for RA).


If you haven't already, I suggest that you

create a post on the "Seeking a doctor" forum

to find a lyme- literate physician nearest to

you who can address this. Even if your

PCP happens to be fairly lyme savvy, there is no

substitute for a specialist.

Good luck to you!
 
Posted by Kln (Member # 19070) on :
 
Thanks, to both of you.. I appreciate any input and all the help in learning and understanding Lyme's diagnosis and treatments!
 
Posted by CathyMary (Member # 20071) on :
 
Kin,

Many people can test positive for RA and not have

it. If it was an A N A test the number matters,

the higher the more likely it is RA. More testing

is necessary. Unfortunately you have Lyme so as

mentioned above it probably is lyme. ugh so sorry
 
Posted by Kln (Member # 19070) on :
 
Leelee,

According to all I have read and have learned about DC, it is hereditary and normally affects males...I am female... unless I am missing something! (Smile) There are times I am miserable and other times, just annoyed because of DC.

I try to take the aches and pains with this mess with a grain of salt and a heavy dose of sugar.. I don't mean to make light of LD, DC or RA...just my way of coping.

I do plan on getting copies of every lab and test result though. Documentation is the key for proof of what has been done and why.
Thanks for commenting.
Kaye


Kathy,
LOL I have never been so confused in my life...though confusion and I are at times best friends!

I guess I will have to wait a few more hours then see what they recommend.

I know it is best to locate a LLMD but finances do not allow a specialist.

Thanks for taking the time to comment!
Kaye
 
Posted by paulieinct (Member # 17514) on :
 
I had not heard of DC, but have had the symptom, for the past year, of fingers locking into a clenched position. I have always assumed this was part of Lyme. I have heard of other Lyme patients with this symptom.
 
Posted by CathyMary (Member # 20071) on :
 
Glad you got a good laugh, all my sentences were

incomplete and confusing.

Just the way my lyme brain functions these days.

Since I think I did have something to add let me

try again.

The first Arthritis panel a doctor usually runs

is called an "ANA."

It measures inflammation. If positive it

INDICATES RA.

An examination by a rheumatologist and a few more

RA test can confirm it.

Many people can test positive with an "ANA" and

not have it. Positive results have a scale of

numbers. The higher the more likely you are to

having RA, example.

I recently tested positive with around

400 and further testing was negative. My sister

test was positive and her number was close to

3,000, her other tests were positive.

On my previous post I was also trying to agree

with 22Dreams about Lyme mimicking other

diseases. Which is probably why my RA test was

positive.

I also said sorry either way because both

diseases stink and I wish nobody had them.

**************

I take RA very serious, my mom has sever RA, she

is 72 now. Let me paint a picture. She has had 16

joint replacements (yes many dome twice)by the

time she was mid 40's.

Her spine is so curved it is like a small c and

she can't lift her head upright.

Her fingers are completely deformed, her

thumbs are almost gone into her body.

Her chin just floats, her mouth looks like she

had a stroke.

She has difficulty eating because her ribcage is

closing in on her.

She has been in a wheelchair since she was 40.

Amazingly, she still transfers herself and can

walk very short distances, though she is tired of

living in pain.
 
Posted by Tracy9 (Member # 7521) on :
 
Hi there,
Just wanted to invite you to also join us at www.lymefriends.com. It is more of a social networking site for those with Lyme, but you will find many of your new friends from here over there as well.
 


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