HealingWell
Search Close Search
☰

Retesting CDC (already positive)

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/3/2016 8:23 PM (GMT 0)
Met with first LLMD a couple days ago and he drew blood to re-test Western Blot + all co infections through quest.

7 weeks ago I had a positive WB and negative to all co infections.

He said he wanted to see if I added any IGG bands or dropped any IGM bands, and that if the IGM bands decreased (I had two) it was a sign I was overcoming the infection.

Does this make sense? I thought IGM will go away entirely after a couple weeks, even in folks like us who are battling long term active infections?
Posted 9/3/2016 9:09 PM (GMT 0)
I doubt if re-testing will tell you much...if anything.

The WB is not considered a valid test to gauge response to treatment, and healing.
Because it is an antibody test...and this relies on the state of your immune function - it can't be relied on.


"I thought IGM will go away entirely after a couple weeks, even in folks like us who are battling long term active infections?"

In most diseases, that is what happens...but with Lyme - it often does not change from IgM to IgG.

I was IgM Positive 15 months after my symptoms started (no treatment in that time)
I only had IgG 41 positive.
Posted 9/3/2016 9:11 PM (GMT 0)
This is opinion only, but to me why test if you know you have lyme. Co-infections can be hard to detect so getting another test may not show it anyway.

I just think it is an expense you don't need. Especially since lyme is frequently a clinical diagnoses (according to cdc) and you generally need to treat for at least two months beyond symptoms.
Posted 9/3/2016 9:54 PM (GMT 0)
I re-tested based on the recommendation of the LLMD I had seen in Bridgeport, CT.

I declined to do IGENEX because I felt the same way as you guys. At least this is done in network through Quest.

Best case scenario maybe it will sing a co-infection this time around. I'm still not as convinced as the previously mentioned LLMD that I don't have Bart based on how quickly the onset of neuro (dizzy/lightheaded) began.
Posted 9/3/2016 11:10 PM (GMT 0)
Lymepilot,

I was given the same request by my LLMD. I also declined for the same reasons. However, now wondering if it makes sense to know the cos. But sounds like that won't happen anyway. So are all cos treated by symptoms? What do you do for the dizziness/lightheadedness? Hope you feel better soon.
Posted 9/3/2016 11:55 PM (GMT 0)
I am currently being treated by an infectious disease doc. She put me on IV Rocephin after four weeks of failed Amoxi. I have seen some improvement to the point that I'm not bed ridden all day, but the dizzyness/lightheadedness can still be pretty strong at times.

This ID doc is great in the sense that she was willing to continue to treat after four weeks of failed oral abx, and was even willing to get me on IV Rocephin after a negative spinal tap, but I don't think she is willing to go as far as diagnosing co-infections based on symptoms.

I met with my first LLMD a couple days ago. He's the one that is re-testing. I doubt I will continue to see him. I have an appointment in early October with a highly renowned neuro LLMD. Hoping he can solve the dizzy/lightheaded issue.
Posted 9/4/2016 11:39 AM (GMT 0)
Lymepilot,

I hope the new LLMD works for you. Is it Dr. Y in Manhattan? He is a neuro LLMD. I had a scheduled appt. with him but switched to someone else because my lyme isn't neuro yet (although maybe, who knows). Please keep us posted on how it goes with him/her/
Posted 9/4/2016 12:11 PM (GMT 0)
Is the LLMD testing through labcorp? I don't feel labcorp is good at all. I had band 18 on IGG through my regular doc then met with new LLMD a few weeks later and nothing showed up, yet my c6 elisa is super high. It seems to vary by the day with that lab. My IGeneX test was IND.
Posted 9/4/2016 12:20 PM (GMT 0)
Actually my internist tested me through IgenX when I was first infected. My tests came out negative and/or indeterminate. These were the results:
Immunology: 381
LYME WB IgM result: NEGATIVE
(*indeterminate)
IGM bands (Da): 41 (IgM non specific bands were also detected -18, 36, 64, 93

LYME WB igG result: NEGATIVE

IGG BANDS (kDa: 41(IgG non specific bands were also indicated - 64

WB COMMENTS: While there is some band reactivity, these results do not meet the CDC criteria for a positive Lyme western blot. The CDC criteria for a positive Lyme Western blot is as follows for IgM: at least 2 of the 3 specific bands (23, 39, 41 KDa) must be present. For IgG, at least 5 of the 10 specific bands (18, 23, 28, 30, 39, 41, 45, 58, 66, 93 KDa) must be present. A Western blot that contains specific bands but does not meet the positive CDC criteria is considered indeterminate by the NYS Dept. of Health.

I had full bulls-eye and symtpoms so clearly positive. The new LLMD wants to retest but I don't want to spend the money when I already know I have Lyme. Now wondering if I should. Helpful to know if other cos/bands appear.
Posted 9/4/2016 12:50 PM (GMT 0)
New LLMD I am seeing next month is Dr. K in Orange, CT

Blood test this past week are going through quest, which is the lab I originally tested positive with.

Not that I want to have another infection but it would almost be nice if Bart of Babs comes back positive. At least the ID doc could start tackling that while I wait for my October appointment.
Posted 9/4/2016 1:52 PM (GMT 0)
Is it the famous Dr. K? Two syllables, German sounding name? Please let us know how it goes. I concur. That is my reasoning for possibly agreeing to the second test. I was tested too early. Tick was tested through Stony Brook and lyme/cos through IgenX.
Posted 9/4/2016 2:26 PM (GMT 0)
Lyme bacteria can their outer surface proteins all the time. This is not only they way they evade the immune system, but why retreating for Lyme makes no sense. We need to expect the results to change, and not always in favor of getting more treatments from a doc that believes in said tests.

I hope you tests positive for a co infection (boy, that's weird to say!) So that there's no question about continuing treatments until you get in to see the LLMD.
Posted 9/4/2016 2:36 PM (GMT 0)
Hoping you test positive for cos - LOL! Let us know how it goes. I'll decide next week if I will retest. I may do it just to see a read on the cos. I know they probably hide but need to get healing. As of right now just doing detox and immune building. Will start the new herbs once they arrive. Just want something that I can actually tolerate.
Posted 9/4/2016 4:30 PM (GMT 0)
Regardless of the test results, I am continuing treatment. Rash, symptoms within days and Lyme positive couple weeks later on WB + ab screen. No question I have Lyme. Even if the next test comes back negative, it's meaningless to me. I'm lucky, I had that positive test right away.

ID doc isn't going to continue treating after the IV is up unless I test positive for a CO. She has already been better then most LLMD's, so I can't get that upset.

It's insane hoping for a positive co, but I really feel I have one and that has been the barrier to my recovery. Three doctors including an LLMD agree that I caught Lyme no later then 30 days since getting bit by the tick. Oral abx and then IV within days to weeks of getting infected.

I'm thinking babs or Bart, but especially Bart.

Almost immediate onset of neuro issues.

My eyes have just felt off ever since getting sick. No blurred vision, the eyes just don't feel like they should. Also continuously bloodshot.

I don't have a baseline to compare against but my body temp is regularly 97-97.5.

I understand all of these point towards Bart?


And to answer an earlier inquiry, the (llmd) Dr. K I a, seeing is a neurologist in Connecticut. Originally from Israel, and a professor at Yale.
Posted 9/4/2016 4:36 PM (GMT 0)
Generally speaking, Lyme combined with Bart brings on my serious neuro issues, so your thoughts are correct in that - although this is not necessarily a confirmation that you are dealing with Bart - it's just saying that the likelihood is definitely there. (ha! Was that vague enough?).

What kind of points to Bart even more is the bloodshot eyes.

With your body temp that low, I would greatly encourage you to get your thyroid tested - remember to insist on T3 & T4 testing as well though. Most doc's stop with the TSH and that doesn't tell us anything about how the thyroid is functioning.
✚ New Topic ✚ Reply