posted
Last week I ended up in the ER due to severe joint pain/swelling. It came on a few days earlier (not close to severe) and eventually built up to the point I could hardly move.
At the ER I could barely walk and even found it painfull / difficult to move my neck to answer a simple yes or no question. Due to the number of days I spend in the outdoors (I am a Maine Guide) in a largely known deer tick area they put my on Doxy 2xday / 21 days. They sent my bloodwork off and said to follow up with regular MD in a few days.
Doxy is helping greatly. No more "all over severe pain" but it seems to be much less and migrating from joint to joint. Each day is like being in a different car wreck with different pains. Overall though, 100% better than when in the ER.
I never noticed any ticks or bites in the recent past and we keep a pretty good eye for this stuff. No rash, no target.
Anyway the initial testing came back negative for lyme. I asked for a new series of blood tests and had them to Igenix. Hopefully we can get to the bottom of this.
Any advise?
Posts: 5 | From Maine | Registered: Oct 2009
| IP: Logged |
Most don't recall seeing a rash (either they never had it or was in a spot where it wasn't readily visible).
The tests have an accuracy rate of 46-58%. That is like flipping a coin.
Igenex even states on their test results that the sensitivity of the test is around (I wanna say) 78%? (don't recall. 70-something?).
To be considered accurate and for use as a diagnostic tool, a test's sensitivity must be at about 95 percentile or above. HIV, for example, is 99.5% sensitive.
So: in other words, Lyme disease is a clinical diagnosis. There is no test to rule it out, or rule it in.
Exposure + symptoms = diagnosis as determined by a lyme physician.
Sounds like you have had the potential for exposure and have some symptoms.
Advice?
I would suggest posting in the "seeking doctor" section to find a LLMD closest to you to have your situation assessed by a professional.
Good luck!
Posts: 571 | From Massachusetts | Registered: Oct 2008
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Welcome!
I agree, do not depend on a lab test to make the diagnosis...it is based on history and symptoms.
The fact that you are responding to doxy is a good clue.
Lyme will require longer and stronger dosages than you are on.
You also should be evaluated for coinfections like babesia, ehrlichia and bartonella,etc.
You can find a Lyme literate MD on the Seeking a Doctor board here.
Please make sure you start by reading these important treatment guidelines....
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
posted
Keep in mind that most people on antibiotics for Lyme will "herx" (Jarisch-Herxheimer...google it) making the symptoms worse. This generally happens every 3-5 wks, but can happen when changing meds or "just because."
Wanted to warn you!!
Begin your search for a Lyme specialist .. LLMD. You can go to Seeking a Doctor here for help.
I'm sorry you're in so much pain. Keep after treatment until you are pain free!
PS .. There are several threads at the top of the page in Medical Questions that are designed for newbies! Be sure to check it out!
If you have any more medical questions, post them in Medical.. you'll get more responses there too!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
bettyg
Unregistered
posted
welcome big shooter
yes, please start your OWN post in seeking dr; don't just add onto someone else's post ... we don't see them.
once we answer them, we rarely go back; thx
subject: MAINE & NEW ENGLAND llmds needed
you could copy your entire post here and post there so we all have more info to work from too ok.
go to lower left corner and mark box to receive all replies see you other there.
Welcome to Lymenet! I'm so glad you found us! You've come to the right place for education and support!
The following is some links that may be helpful to you:
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately.
This explains the medical politics around Lyme, and why you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases. www.ilads.org
They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in. Be sure to download Igenex's required form. MD, DO, ND, AC, DC are all fine** must sign, date, and show diagnosis code on there why he's ordering the test.
Optional tests include: co-infection panel for your area of country and PCR whole blood
Igenex is pre-pay/out of network for most insurances. If you are on medicare, Igenex will file the paperwork & it's free to you.
Betty's suggested posting guidelines: Many of members have neuro lyme, and it is hard to read long solid block text and be able to comprehend.
For easier reading, please edit your post by clicking the ``paper pencil' icon to right of your user name, which opens up the subject line and body text.
You can break up your longer paragraphs into smaller paragraphs. Please hit ``enter'' key twice after each paragraph, also.
Go to left hand corner and mark box to receive `all replies', and click edit send.
Thank you for posting in a manner that makes it easier for all to read and help others.
IP: Logged |
just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Welcome big shooter.
I am so old and been here so long they COULD call me 'NO SHOOTER"
kindest regards,IB--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Hello shooter. It is very common to get a negative
test. Some even require a antibiotic challenge to
see if they can get a better antibody response.
Glad you are testing with Igenex. Remember even if
it says neg. if you have specific bands you can
still have borrelia. It is always a good idea to
get copies of all tests performed and ask
questions. Low body temp., and elevated
hemoglobins and red count are also a good sign.
Some docs think if you even have one specific
band with symptoms you can be treated with a
clinical diagnosis. So always get those reports. Good Luck.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| 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!
![[Smile]](smile.gif)
Printer-friendly view of this topic