posted
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
Posts: 13 | From Texas | Registered: Feb 2009
| IP: Logged |
Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
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
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
| IP: Logged |
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!
Posts: 13 | From Texas | Registered: Feb 2009
| IP: Logged |
Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
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.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
| IP: Logged |
posted
Thanks, to both of you.. I appreciate any input and all the help in learning and understanding Lyme's diagnosis and treatments!
Posts: 13 | From Texas | Registered: Feb 2009
| IP: Logged |
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
Posts: 13 | From Texas | Registered: Feb 2009
| IP: Logged |
posted
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.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
| IP: Logged |
posted
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.
Posts: 105 | From Mass | Registered: Apr 2009
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
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.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic