posted
I've been dealing with various symptoms since late January that are finally being identified as Lyme. I will be tested for Lyme, lupus, and rheumatoid arthritis tomorrow, but since my doc suspected LD the last time I saw him, I've been on abx for 12 days. Will the test come out negative because of being on abx for 12 days? I know the testing isn't completely reliable anyway but I wanted to get some feedback.
Here's the background: Late January: flu-like symptoms with lots of neck pain/stiffness (as if I woke up after sleeping on it really wrong), very swollen glands on my neck, sore throat when swallowing, some headaches, earaches, fatigue. Was diagnosed with adenoiditis, put on antibiotics for 10 days or so, and the symptoms went away.
Late March: mild fatigue, more soreness in my neck. Never went to doc since symptoms went away on their own.
Early June: neck pain, earaches, headaches, swollen glands, fatigue and more recently joint pain in my elbows, wrists, and knees.
Over the last couple of months I have also experienced a few hallucinations during sleep and other sleep disturbances such as talking in my sleep (which I haven't done much of since childhood - I'm 33 now).
I had a strep test a couple of weeks ago that came back negative, and that doc (in my doctor's practice, but not MY doc) looked at me as if I was crazy after I told her what I explained above. Then after the joint pain started, I went to see MY doc and he figured it's either Lyme or a version of strep that they didn't test for. Now that I've been on the abx for about 12 days now and the joint pain and fatigue isn't going away (altho some of the other symptoms are much better - except for a yeast infection that I manage to get every time I'm on abx, despite taking acidophilous), I figured I'd call the doc. Of course my doc is on vacation, but another doc (not the one that looked at me like I'm crazy, thank God) suggested I get tested, so here I am.
I guess you have figured out that I didn't have the rash/bull's eye, nor did I find a tick. I spend a lot of time outdoors, and I live just a few miles from Lyme, CT!
Sorry this is so long, but I figured I'd give you the background...
Thanks! Cara
Posts: 97 | From Clinton, CT | Registered: Jun 2007
| IP: Logged |
posted
I think they're talking about Strept A -- rheumatic fever... It might be worth testing for that also, but either way, you're probably going to end up needing abx(does it really matter what you have if you kill it with abx?). The lyme tests are supposed to be pretty unreliable especially from a lot of the labs used, so be prepared to have to go through the lyme disease route if your doctor can't figure it out with other tests.
And a lot of people diagnosed with Lyme, didn't have the rash either. I wish you luck either way.
-------------------- Never walk through a cornfield backwards.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Heck I went six months before my elbow stopped hurting it takes time and different abx's.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
Which antibiotics (abx) have been used?
The ELISA Lyme test is very unreliable-ask for a Western Blot and get a copy of your result and post here which bands were positive. Better yet, contact Igenex (www.igenex.com) and ask them to send you a collection kit for their Western Blot (IgG and IgM).
Read about coinfections-the swollen glands may be a symptom of Bartonella.
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
| IP: Logged |
posted
I have been on amoxicyllin for 12 days. My husband is picking up the form to bring to the lab, so I'll post back here tomorrow re: which test will be conducted through my doc. Since I live in CT, I'm hoping that these doctors are well-versed in Lyme... My husband was successfully treated quite a few years ago through the same practice.
Thanks for everyone's replies.
Posts: 97 | From Clinton, CT | Registered: Jun 2007
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Most likely they will run an ELISA test and, if it is positive, a Western Blot to confirm. The problem is that the ELISA has a large number of false negatives.
Most people on this board try to get their blood sent to Igenix laboratories, which specialize in tick-borne diseases. Not all insurance will cover them though.
Just remember a negative does not mean you don't have Lyme.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
posted
My husband picked up the form to get the testing done.
The requested tests are: 1. CBC 2. ESR 3. Lyme Screen with reflex to western blot 4. RA (Rheumatoid Factor) 5. ANA Parvovirus IgM + IgG
Seems like they are covering the bases, as I understand it from reading various stuff from here.
What do you think?
Posts: 97 | From Clinton, CT | Registered: Jun 2007
| IP: Logged |
dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
no, don't count on it...the labs, such as Quest, Collaberative are not reliable labs for lyme testing. A negative from them can't be taken as gospel.
If you need to pursue with a lyme literate doc. you can private message me.
Posts: 2675 | From ct, usa | Registered: Jan 2004
| IP: Logged |
janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
reflex to Western Blot means a Western blot will only be done if the Lyme screen (ELISA) is positive. Problem is many, many (maybe as many as 70%) of Elisas are false negatives.
amoxicillin , for Lyme, needs to be dosed much higher than usual. What is your dose?
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
| IP: Logged |
posted
I'm on 875 mg of amoxicyllin. I'll get the blood work done tomorrow, so it won't be long for the results to get back...
Posts: 97 | From Clinton, CT | Registered: Jun 2007
| IP: Logged |
Talked to my doctor on Thursday and the first test (ELISA) came out positive. Now we are waiting for the results from the Western Blot.
I tested negative for lupus and rheumatoid arthritis.
The doc didn't want to prescribe abx until he got the results from the Western Blot back. Told me to take 800mg of Motrin 3x per day for pain.
By Saturday my husband was very frustrated with the situation, so he called the doctor's office and told him that I was getting worse in all ways and that the first test came back positive for Lyme, so please start treating it! It worked, thank God.
I started on Doxycycline 100mg 2x per day for 21 days. The biggest problem now is that the joint pain is getting worse, and now I'm worried that 3 weeks isn't enough.
Any thoughts? My brother-in-law knows of a LLMD in New Haven, so I'm going to make an appointment with him/her as soon as I get the name.
Posts: 97 | From Clinton, CT | Registered: Jun 2007
| 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