Need Advice - CDC test results are through the roof!!!

Well, on the one hand - it's good that they recognized your husband has lyme.

BUT, he will need more than 3 weeks of doxy at a low dose.

(You already know this)

You aren't currently treating your lyme infection? Not even herbally?

Last November I, myself had an equivocal ELISA result, a Western Blot that came back with only 3 positive bands (and so was considered negative) - but had a deer tick feeding on me for 72 hours and developed EM. Went to ER after nymph was pulled out and they put me on 200mg DX bid for 21 days before the ELISA was even processed. After 48 hours of ABX - I was crippled, thought I was allergic to DX, called ER and was told by head of ER, that it was Herx and to keep taking ABX. My husband saw how sick I got and how completely out of commission I was.

I had to inform my husband about his test results and relay the exact info the Resident recited on the phone. This was on a Wednesday and he was very, very, upset and scared - refused to start the ABX because he was terrified that he would herx like I had and be unable to work or even stand, and...he wanted to consult face to face with the Dr. to discuss his test results,LD, plan of treatment, his fears, and to get a note of medical excuse for his job - in case he was rendered immobile. On Thursday, he still refused to take the ABX. He went to work, as he did on Friday morning also. He begged me to call that office and get him in there ASAP - because he was not going to start those ABX without them speaking directly to him. I called the office and explained that he needed to see the actual overseeing physician and that since his test results were positive - he didn't want to fool around with any residents and that he would not take the ABX until and unless he met with one of the office's Dr.s. They did not want to allow him this appt. nor did they want to comply with his request to not meet with a resident, however they granted him the appt. that day. I called him, he left work, picked me up and off we went.

When we got there, we were taken in the back and they sent the same resident in...even though they said he wouldn't have to deal with him. He explained his concerns and this same resident said: "Well - it's nothing to worry about. You can still go to work and do everything a healthy person does. It's not like Mono or anything. Just take the Doxycycline and you should be just fine. I can excuse you for this ONE day...but there's no reason you should have to miss work or have any problem whatsoever. The antibiotics are very, very safe, relatively mild, and have minimal side effects." We explained that I had LD the previous year and that I couldn't move. Then filled him in on what the ABX had done to me and that we knew all about the Herx reaction.

He said that he was very surprised that I had that reaction, that he had heard of that reaction but that it's very, very rare, and in fact I was the very first person he had ever encountered who had a Herxeimer reaction. He then went on to contradict himself in what he had said on the telephone 2 days previous, and explained the "Critically High" - 1.8 antibody test result as indicative of an OLD infection, and used this as a justification for why my husband should be able to continue working like he has been - since he has "probably had this for a long time and been able to work and function." Then, we told him we wanted to see the overseeing physician. She came in and joined the resident, and the 2 of them were all giggly and she agreed that she had never had a patient experience a Herx reaction either. The resident again contradicted what he had said on the phone with me 2 days prior, and explained the the blood had gone to the WESTERN BLOT - and then the attending physician chimed in"That is the test we do to test for specific infections". Then the resident said: "Everything will be fine. Just start taking the Doxycycline and you'll have NO problem...I've treated TONS of Lyme Disease and never had any further problems." He and the attending both nodded and giggled nervously and we wanted to strangle them.

NEXT: Please digest THIS segment #2 of the B.S. - and the best part is yet to come...the Western Blot results and the out and out medical negligence currently being shamelessly bestowed upon us.

I know Girlie!!! It's disgusting, devious, ignorant...actually it is the equivalent of evil when they care so little about doing no harm, and actually pretend to be experienced in something - knowing full well they are not...while laughing at the ones who are suffering.

Back to our hideous story: Late in the day, on that very same day as the "consultation" - my husband gets a call on his cell from....The Resident. My husband is less LL than I am and he is also not the most thorough communicator with his feelings/thoughts/questions, etc. The Resident informs him that his Western Blot has come back and that it's positive "so it's really important you start taking the antibiotic" (no mention of the so-called, supposed testing for the "only 2 specific infections we ever see with Lyme"). Husband says "OK" and that's the end of the call. He starts low-dose Doxy the next evening, Saturday the 3rd. We are both worried that he is going to Herx.

I research and discover that there is some info on a LL site/blog that states that if it's a recent infection and there is going to be a Herx, it will begin 48 (exactly when mine kicked in) to 72 hours after first dose, and that if it is long term, chronic, undetected Lyme..if a Herx is going to happen, it'll begin on the 3rd or 4th week of ABX treatment. He clears the first 48 and he's fine. He then makes it through the 72 hour mark - without incident. 2 days ago, he calls me from work and starts describing a type of headache he's never experienced before.

Yesterday, he went to his monthly appt with his APRN who is super sharp and prescribes his daily meds. He tells her that he has LD and tested positive twice. She was absolutely furious when she heard how lightly those 2 physicians treated this and him. She stresses to him that this is no joke, that this can go into your brain, and that even without his tests in front of her...she knows he should not be working and that he's very sick. She called those Dr.s incompetent and ordered him to get the exact detailed tests, faxed to her somehow - pronto! This was supposed to happen automatically as we signed releases and notated that all test results of any kind needed to be shared with this APRN as soon as results were available.

His 21 day course of ABX ended this morning. We raced to that office first thing this morning to OVERSEE the faxing of the tests in person, to make sure it was actually done, and done right. Then we asked for copies of office visit notes and detailed labs (not just result sheets). We looked at the Western Blot and were totally alarmed to see 10 reactive bands!!! I will post those in a minute, but first...We told the desk that he had finished his antibiotics and that he needed more due to the fact that he has so much evidence of illness and that we do not want an interruption in any progress being made. They said that the Dr.s were having a big meeting with the residents so that someone would be in touch later about ABX.

PLEASE (and thank you) - Digest that...I have to run out for half hour and will be posting the conclusion of all of it when I get back.

Find a LLMD and schedule an appointment for your husband.

He has had chronic lyme for years now..so no urgency.


Yup, that IgG is certainly a positive.

I doubt if you will get any satisfaction from the ID Dr. Just more frustration.

mpost said...

your husband has 10 positive WB bands, he has lyme with a certainty that is close to 100% never seen anything loke this , so many reactive bands....

I know, right? holy moly.

IgM is an active infection - can be new or older.
(I was IgM positive 14 months after symptoms started)

IgG means older , but can still be an active infection.

But - some people will show bands present even after they've treated.

So, this is why symptoms are taken into account - treatment duration is based on symptoms and resolution of them.
You can't use the WB to gauge when treatment is done.

Band 41 represents a spirochetal infection.
Not necessarily Lyme specific - but I'd say most people with Lyme do have band 41 show up.
(From what I see on this forum)