Ehrlichia [POSITIVE] IGG/IGM AB [H] 1.49 indexLyme AB interp. EIA [A] POSITIVE IGG P93 AB [PRESENT] IGG P41 AB [PRESENT] IGM P41 AB [PRESENT] IGM P23 AB [PRESENT] Lyme IGM WB interp. [A] [PRESENT]
The infectious disease doc thought this was a false postive test.
Being a university student, I do not have enough money for so much testing. She did a Western Blot through Quest to see if it was a false postive,
and ONLY band 41 came back on the western blot. And now Ehrlicha is now showing negative instead of postive like it was. I have been on 200 mg of Doxy for 2 months almost. Help?
I am in so much pain, and I have sore soles and my tiba bone hurts so much (About inchs from the ankle) I now have these werid looking purple lines all over my body. She says it;s not bartenlla. I see a lyme ND on March 14.
The infectious disease doc is having me go to a pain specialist now, I am turning 20 soon, and getting married in exactly a month, and she tells me that she does not think I will get better.
ADvice about tests and etc?
Posted by sixgoofykids (Member # 11141) on :
I'd quit wasting time and money on the ID doctor. You have a positive test and symptoms, that should be enough evidence for a diagnosis.
I'm glad you're scheduled to see a LLND. That is who you need to be going to. See if you can stay on the doxy till then.
Many Lyme patients see pain specialists.
Posted by Kirk (Member # 24483) on :
Listen, almost everybody on here has a horror story to tell about a stubborn ID doctor or a GP that just absolutely refused to acknowledge the possibility of lymes, even in the face of positive test results (which seem to be a rarity).
There is a lot of politics and controversy going on in regards to Lymes disease, and unfortunately the people who suffer are you and me. If we all had a nickel for every doctor that told us it was 'fibromayalgia' or that it is all in our heads, we would be able to afford to pay out of pocket for the best treatments!
Go to a lyme literate doctor, check the doctor referral section on this site. You tested positive, your symptoms are consistent with lymes.
What kind of a doctor tells a patient that they will not get better??!! If she doesn't know what is causing your problem, then how can she predict it's outcome?
Posted by Beachinit (Member # 21040) on :
You did 2 months of doxy, great! Your Borrelia is now realing a bit. please find a doctor who will now help you finish the job. Add rifampin or bactrim to doxy or zithro and see if the bad, bad tibia and plantar pain will get better. If it is Bartonella, which they did not test for because ticks only carry it (ya - right)than you may be feeling a lot better and quite promptly in some cases.
Defy adversity mcg08002 at all costs as the cost of not doing so is considerable.
Beachinit.
Posted by mcg08002 (Member # 24617) on :
Defy adversity mcg08002 at all costs as the cost of not doing so is considerable.
Explain lol
Posted by Keebler (Member # 12673) on :
- Adversity: a state, condition, or instance of serious or continued difficulty.
What that means is that your life is on the line. You need expert advice. You can't just roll over and take bad advice. You are no longer a little girl who must be obedient to your superiors when they are ignorant.
You need expert advice. Repeatedly in the past couple months, your ID doctor has demonstrated that she does not have the necessary knowledge. Likely, neither would any other specialist in her IDSA circle.
To what kind of specialist did she refer you? (My guess is a rheumatologist who will declare that you have fibromyalgia).
Have you researched their experience and professional affiliations?
Please go back and read some of the links at your past threads. It's as if this is still all new - I know it's overwhelming but some of those articles in your early threads explain this very situation.
** You wrote: "I see a lyme ND on March 14."
Today is March 29. Hmmm?
If this is the same ILADS-educated LL ND whom you previously posted, she should be a very good choice. But, I'm confused about when you will see her? -
Posted by Dekrator48 (Member # 18239) on :
Do not listen to that ID Dr. We would all be suffering forever if we had.
Your symptoms point right toward Lyme, bartonella and ehrlichia...and maybe others.
Is your appt April 14?
You need a good lyme literte MD/ND fast, otherwise you will be very sick for the rest of your life.
Make sure you read the symptom info on pages 9-11 and 22-27....
- I'm really curious. Did you see the documentary "Under Our Skin"? I now you had it for a couple weeks. Did you really watch it? -
Posted by mcg08002 (Member # 24617) on :
I meant to say I have an appointment May 14th!
Posted by mcg08002 (Member # 24617) on :
My fiance, and all my friends watched it. I was going to send you an email about some questions I had!
Sory I have been sooo busy!
Posted by Elaine G (Member # 20735) on :
Do the purple marks look like stretch marks?
That and sore soles and heels is symptom of Bartonella.
Get checked by a qualified Lyme Literate doctor.
Posted by Keebler (Member # 12673) on :
- Stephanie, you said you have some questions about the film. You might post a separate thread something like:
Saw "Under Our Skin" - questions about the film.
[ 03-29-2010, 09:42 PM: Message edited by: Keebler ]
Posted by Lymetoo (Member # 743) on :
You certainly won't get well under that ID duck. Haven't we been all through this several times??
You have the DNA of the Bb in band 93 .. then there are all the other bands you have.
Positive test means you have Lyme.
Posted by Pinelady (Member # 18524) on :
Your feet thing could also be thyroid problems from the Lyme invading your cells. The thyroid may be
there but it cannot be metabolized right because they are infected with Borrelia...
Many get so sick on treatment-they need hospital care and instead are left to suffer because of docs like you are seeing... Don't let that happen.
Posted by n.northernlights (Member # 17934) on :
Were your negative test while you were on doxy?
You need to be off antibiotics for about two weeks for accurate testing.
also, Labcorp only tests for three bands while Igenex tests for 10 bands.
Posted by lyme987 (Member # 22148) on :
Take a picture of the marks on your back (usually a sign of bart). Then you can show they to your LLMD when you see him or her. Stop seeing that duck. He/She will only make you depressed and you don't need that now. Try to find a support group in your area for feedback on other good docs in the area
Posted by Keebler (Member # 12673) on :
- duck = any doctor -- but usually an ID doctor (or a Rheumatologist, etc.) -- who is uneducated about lyme and other tick-borne infections. Usually follows IDSA criteria and definitions. Will dismiss lyme as fibromyalgia; depression; anxiety; laziness; aches and pains of daily living. -
Posted by Keebler (Member # 12673) on :
- As Elaine G points out with the sore feet and "Weird looking purple lines all over [your] body" - Bartonella is suspect.
Bartonella's another tick-borne infection that the ID doctor SHOULD HAVE tested you for but probably did not. Bartonella can also be transmitted by cats, fleas, etc.
Be sure to avoid steroid creams & take photos of any rashes and changes along the way. Date photos by putting a current newspaper or magazine and get your face in at least one photo so you are clearly identified as the person with the rash.
Also put a ruler or clean coin near the rash for size recognition.
A monthly newsletter that investigates Lyme Disease and Chronic Illness in the U.S.A. -
Posted by Keebler (Member # 12673) on :
- Are you planning airplane or (ocean) boat travel for your honeymoon at the end of April?
River boats are much easier but if you plan to fly or be on a boat in the ocean, there are precautions and arrangements you would want to take, at least in going through the terminals. You would order wheelchair service, for starters.
Once on your way, ginger capsules - for air or sea - can help to ward off vertigo or nausea.
Will you be going somewhere quiet and calming?
Can you get "trip insurance" or somehow get credit if you need to alter your plans at any point?
If you are going out of the country, be sure to have some sort of travel MEDICAL insurance policy. These can be arranged for short term, for the places you plan to visit. You can call your local AAA (American Automobile Association for a start on how to go about that.)
Again, if planning to go out of the country, if you would need any kind of vaccines, be VERY cautious. That could be very detrimental to you at this time. -
Posted by Lemon-Lyme (Member # 19229) on :
quote:Originally posted by mcg08002:
I am in so much pain, and I have sore soles and my tiba bone hurts so much (About inchs from the ankle) I now have these werid looking purple lines all over my body. She says it;s not bartenlla. I see a lyme ND on March 14.
Those symptoms sort of scream 'Bartonella'. I think a Lyme doc will consider treating for Bart, based off of those symptoms. regardless if you test positive or not.
There is no logical reason not to test for it, and all co-infections. And no logical reason for you to keep seeing this same ID doctor.
Posted by Robin123 (Member # 9197) on :
Stephanie - almost all ID docs say anything to keep us from knowing we have these diseases. Even if you have the positive tests you have. It's very political.
Only Lyme-treating MDs/NDs etc connected with ILADS are going to treat you properly.
Posted by IckyTicky (Member # 21466) on :
Please take a picture to keep on hand of the bartonella rash you have.
Glad you are seeing a REAL doctor soon.
Posted by tick battler (Member # 21113) on :
I would also suspect bartonella with your symptoms. Bartonella can respond fairly quickly sometimes if you get on the right drug. I would ask for Rifampin along with the doxy.
And I agree with the others...leave this doctor fast and get in to see a real lyme doctor ASAP. I would try to find someone before May if possible.