The night sweats your having are a common symptom of Babesia. Your Dr. probably didn't test you for that. It is a co-infection with Lyme. The tests for it are not reliable. Because there are hundreds of strains of babs, and they can only test for two of them. They have to go by symptoms.

If your doctor is unfamiluar with Lyme disease he/she will not know how to read your "negitive" test. Your dr. probably did an Elisa test for LYme which is 70% inacurate. He/she needs to do a Western Blot to see what bands come up. Their are certain bands that are specific to Lyme. In other words your test can be neg. but you can still have Lyme!

BTW- four weeks of doxy isn't enough to kill the lyme bacteria, because of its life cycle. You will probably need a Lyme Literate Medical Doctor (LLMD) It is usually a waste of time seeing other doctors.

Treepatrol gave you alot of good links read through them. Become informed.

Good luck,
Lisi

P.S. In the future, for us chronic late stage lymies can you please break up your writing into small paragraphs, its easier for us to read. TY

 

My Elisa test has been negative for the last 15 years but my Western Blot is always at least "mildly" positive depending on whose interpretation you are using. I have had Lyme and been treated every year for the last 15 years. At the moment I am on IV Rocefin, it took me over 6 weeks to convince the Doctors what was wrong with me this time, and it was a long and miserable 6 weeks.

I know exactly how you feel about going to the barn, I actually had to start driving my truck out there. I would suggest that you ask your doctor to do a Western Blot and ask that a copy of the results be sent to you. Dr.D in Boston says if you have any reactive bands at all then it is positive and requires treatment, particularly if you are having the symptoms that you are having and I am living proof of that.

I am feeling much better on the IV although my joints are still giving me trouble and I am still having headaches, but not as bad as before.

I took the literature about how to read a Western Blot written by Dr. D to my doc and showed it to her. I think that ultimately may be what convinced her to try this treatment. The 2 bands I had that were positive are specific only to Lyme. Also the CDC recommendation of how to read a Western Blot is flawed and was never intended to be used for a diagnosis, unfortunately many doctors don't know that.

I am seeing a rhuematologist next Tuesday to have my joints evaluated.

I want you to know that you need to trust yourself enough to stand up for yourself until you get treatment. I am also a Type A and that contributed to the doc's listening to me because I was so pitiful and unlike my normal self. If you can't get this doc to listen to you find another one and keep looking until you get help.

There is very much we don't know about tick borne illness and you will need to find a doc who is willing to admit that and who will really listen to you. Use all the links and resources on this site, they are invaluable.

Good Luck and Keep the Faith!

------------------
Deb :>)
 

Welcome to this 24/7 educational & support group board, www.lymenet.org !
Here's TREEPATROL's and TINCUP'S combination newbie links.
http://flash.lymenet.org/ubb/Forum1/HTML/029917.html

Print off the links then check them off as you read as you could spend several months reading all of this. Treepatrol constantly adds new links as they become available from the members here.

print & read Dr. B's (a lyme literate MD) info first; you will come back to this often.

Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful!
http://www.lymeinfo.net/lymediseasetreatment.html
http://www.lyme.org/otherdis/ld_symptoms.html - LYME SYMPTOMS

Some guidelines from Betty/others on using this message board:

* Do NOT use all caps when posting; it's hard on our eyes. But I know one of our members has macular degeneration, and all caps is what she can see & read so exceptions like this are acceptable for good reasons.

* We chronic, late-stage lymies can NOT read long paragraphs. So please limit your paragraphs to 6-8 lines max of text and double space between paragraphs.

* You can EDIT your text comments anytime. You can NOT edit your subject line so please make it as specific as possible instead of ``help, question'' etc. in order to have more readers/replies in trying to assist you. There are between 30-40 NEW/replies to post daily so we can't read all the posts on our limited time here...thanks for understanding.

* If you use the ``quote'' icon, please DELETE [B] bold at the beginning & ending of the quote. This makes it easier on our chronic, late-stage lyme eyes.

* To just reply without quoting, go to the top or bottom of screen in the black & white area to reply or post a new topic. Many of us couldn't see it when we 1st started posting. Thank you for helping us all out!
*
Bettyg, Iowa
=============================================
The WESTERN BLOT IGM & IGG blood test nos. 189 and 188, are the only accurate tests for LD. They should only be sent to these 3 USA's Lyme testing labs:

IGENEX LAB:
797 San Antonio Road
Palo Alto, CA 94303
1.800.832.3200.

(If the early test, called IGM, is negative; the later test IGG is NOT done!)
Please see their web site: www.igenex.com for their current prices effective May 1, 2005 and

to print their REQUIRED form, which MUST be signed by the doctor, DIAGNOSIS CODE NO. COMPLETED!; Medicare's UPIN no., and your blood taken EARLY in the week so it doesn't sit in post offices!

Write on their forms you want results FAXED to their drs. Office; snail mail paper copy so it's not lost like mine was!

NON-Medicare patients must PREPAY by check or credit card for the tests since they do NOT handle insurance papers.
Medicare patients do NOT have to prepay!
7-24-05...CALL 1ST ABOUT MEDICARE; just read today someone having troubles w/medicare paying!

2. MDLabs from NJ, www.mdl.net
see their site; they too require their own form. NO prices are listed; you must call their 800 no.

3. BOWEN labs from Florida, www.bowen.net 727.937.9077
You pay $250 tax-deductible payment for testing, and they send you a picture of what shows up in your blood. You also get the results within 24 hours after the blood is received at Bowen. They are also a 501(c)(3) lab and you can take the donation of $250 off of your taxes if you live in the US. They fax the results and then about a week later send the actual pictures.
Lyme should be diagnosed clinically using medical history in addition with the Western Blot blood tests as no currently available test is definitive in ruling-in or ruling-out infection with Ld pathogens, or whether these infections are responsible for the patient's symptoms.

NOTE: Please send a copy of your health insurance card to YOUR insurance comany (mine is Wellmark BC/BS, Iowa) for them to submit to BLUE CARD (handles other states) them to FORWARD to California's Blue Shield health insurance company since they will require that, DRS. Diagnosis Code No., and which date of service is correct (IGX has 3 different dates on their paid receipts....use the DATE OF ACTIVITY!).

FYI - mine was returned to me after 6 wks. After submitting; dr./blood lab failed to show DRS. DIAGNOSIS CODE NO. on their form! It went to 7 people to be returned to me! Disgusting!

bettyg, Iowa
 

Also, it matters which lab was used.