posted
Got Western Blot results back yesterday from PCP office (not sure what lab used probably Labcorp). Really surprised they were back already since it was drawn last Friday late PM and results back noon yesterday.
Anyway, all IGG bamds (CDC report bands only) absent and only 41 on IGM.
2003 CDC IGM positive with 23 and 41, IGG negative from Stonybrook. IV abx 6 wks then orals until June 2004. December 2004 relapse with very reactive WB and Positive PCR from Igenex.
So of course PCP thinking LD not an issue. I in the moment said absolutely nothing. I can't think at all these days until hours even days after an event especially Dr. appts.
I sure feel like I am relapsing. All my Sx can't be related to the subdural hematoma I had a few weeks ago. They put me on Norvasc temporarily for hypertension from the bleed. It has lots of side effects (mostly very rare) but alot of my sx slowly getting worse before on that.
My LLMD appt isn't until 3/24. He wants all my records from hosp and doc visits which I requested but doubt they will be forwarded in time (even my primary hasn't gotten them yet after 3 calls).
Anyone have any suggestions on how to handle that visit, questions, treatments, other testing (hopefully my pcp could do as my finances are in a sucky place right now).
Don't even know if I will make it till then especially with all my non-LL appts before then. (Neurosurgeon, Hematologist, PCP, Dermatologist, Neurologist, and Psychologist!)
Just so tired and confused...
-------------------- "Courage is the mastery of fear-not the absence of it."-Mark Twain
Still trying hard to be brave...Deb Posts: 82 | From Upstate NY | Registered: Oct 2003
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Lyme Disease is a "clinical" diagnosis. This is why you need a LLMD. A PCP does not know how to do a clinical diagnosis. Test are used to back up the clinical diagnosis. And sometimes you have to treat for a few months to get more bands.
I started treatment with no bands pos, just a clinical diagnosis, and after a year of treatment ended up with an IGM CDC positive.
Dump the PCP! Don't waste anymore money on doctors that will not help you. Get a LLMD ASAP!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I believe the LLMDs like to have blood drawn early week shipped out, tested ASAP . This way there are not sitting in the lab or transit over the weekend.
But with most everyday labs, it wouldn't matter if they had a lyme antibody staring them in the face they'd miss the big picture.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Sorry I missed some of your post. I see that you do have an appt with a LLMD. Thats good!
I would go to your PCP's office and pick up your records. Let them know ahead of time that you are coming so they will have them ready. Thats how I got mine. Then just take them with you to your LLMD appt.
You will feel better after your LLMD appt!
Just hang in there!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
You've had Lyme for quite a while now, and you're familiar with much of the crap we go through.
Yes, you could be relapsing.
I wonder if there's something about the progression of Lyme Disease that causes blood vessels to become fragile, leading to bleeds.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Yes I have had the same ILADS LLMD since 2003 (an intergrative med doc). He saved my life more then once!
I have requested hospital and PCP records but past experience has been that of waiting for them to be copied and ready.
I am not going to dump my PCP she is the only one who has been open minded at all about chronic LD and has not objected to any treatments from my LLMD.
She said at one time she could not treat chronic Lyme cases because she doesn't understand enough about it. I think that is fair.
I have not been on any abx basically since last May (except for a month of Zith and Rifampin in the fall. Stopped for GI problems).
Should I push for an abx challenge and be retested by LLMD. Again my financial picture is not pretty and I really have to limit what I have to pay for out of pocket (which includes LLMD and what ever he prescribes/orders).
-------------------- "Courage is the mastery of fear-not the absence of it."-Mark Twain
Still trying hard to be brave...Deb Posts: 82 | From Upstate NY | Registered: Oct 2003
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Maybe you LLMD won't need to re-test. Possibly could prescribe meds like Doxy that aren't very expensive.
Not sure the point of re-test if you have Lyme symptoms and since you already had it before.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Carol- You got that right and I feel like I am in the middle of a hugh cesspool! I have wondered about the blood vessel thing for years!
I have had spontaneous bruising/purpura for years. No one ever made much of it but I often thought what if someday this kind of bleeding occurs in my brain, what if some of my many neuro sx are from this.
At present I have several spreading sponaneous bruises on my thighs. they have been coming and going for a couple months now. I feel like I am just waiting for "the big one" but can't say anything since all kinds of hypochondriac labels will pop up.
Vasculitis (which can be caused by infection) was brought up by a few docs in the past, including LLMD. Others say no. I think treatment is with steriods so it doesn't matter anyway.
Sutherngrl- Thanks foe your thoughts. Your right I don't really need to retest. I quess I would just like to shove a sero-conversion in their (non -LL) faces.
-------------------- "Courage is the mastery of fear-not the absence of it."-Mark Twain
Still trying hard to be brave...Deb Posts: 82 | From Upstate NY | Registered: Oct 2003
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I would not accept test as a real test for Borreliosis. Any WB takes at least 2 weeks.
You need tested for HIV and other virus' that are common to cause the bruising.
If your PCP has not done these that would be enough for me to stay away from them.
-------------------- 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
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