HealingWell
Search Close Search
☰

Did my doctor test me correctly...

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/8/2012 1:15 PM (GMT 0)
I've been reading a lot of posts on specific test results and am feeling that my doctor didn't test me very thoroughly. As stated in my other post, she also opted to stop treating me after 10 weeks (we believe I've had Lyme for at LEAST 4 years...) without much explanation. I do have an appointment with a LLMD but not until February!

The lab report she gave me includes results for:

Rickettsial Antibody Panel w/ reflex
Rocky Mountain Spotted Fever
Typhus Fever

Bartonella Henselae Antibodies

Babesia Microti

Anaplasma Phagocytophilum

Lyme Disease AB, Total

There is nothing on the lab results that talk about all these different bands I am reading about on here. She did give me a printout of what each band means but there is nothing in my labs indicating that she performed these tests. I'm not sure if I am misunderstanding the testing process or if she was not as thorough as she should have been????
Posted 11/8/2012 2:45 PM (GMT 0)
Was your Lyme Disease AB, Total (which I believe is the ELISA test) positive? If so, you didn't really need to proceed to the western blot. However, it's weird that she would give you a printout of the different bands without doing the test. What did she want you to do with that information? lol

In any case, let your new LLMD sort out what type of testing you need. He/she may want a western blot, CD57 or perhaps would prefer to diagnose you primarily through a clinical evaluation.

If you still have Lyme or co-infection symptoms, then 10 weeks probably wasn't enough for a late stage infection. Particularly if it was monotherapy with low dose doxy.
Posted 11/8/2012 3:18 PM (GMT 0)
My Lyme Disease AB, Total was negative. However, I see she wrote a note at the bottom of my lab report saying additional labs were needed and I went back to the lab on July 12th...I don't seem to have a copy of this report. I am going to put a call in to her. As far as I can read, the only positive results I have are for Rocky Mountain Spotted Fever (Igg titer). I
Posted 11/8/2012 3:27 PM (GMT 0)
What lab were you using? If it's not a lab that's known to be good for tick infections like Igenex, the test results are pretty much useless. However, I would still get the WB from her if you think she did one in your second visit to the lab.

Was this a regular doctor? Because usually mainstream doctors don't run a western blot with a negative ELISA, but perhaps she was more thorough than the norm.
Posted 11/8/2012 3:35 PM (GMT 0)
No, this was just our regular, every day lab....Quest Diagnostics. When she diagnosed me with Lyme (although I'm still not sure why...I know rocky mountain spotted fever is a tick borne disease but IS it Lyme????), she told me that she is far from an expert on Lyme but has been researching aggressively since we are in the northeast and she is seeing more and more cases. She told me she was going to treat me aggressively (even talked about IV antibiotics). Treated me for 10 weeks then suddenly stopped (without ordering more labs) and said I probably don't even need to see the LLMD. Hmmm.....left me a bit perpeplexed and I felt rushed out of the room so couldn't really ask questions. I DO have an appointment with a LLMD (who I know nothing about...) in February, which will be seven months after my initial "diagnosis" and the first available appointment....
Posted 11/8/2012 3:48 PM (GMT 0)
She is likely getting questioned by her colleagues or is realizing the ramifications she could have for treating a controversial disease aggressively. Most likely she didn't realize there was a controversy. Someone probably told her that she could potentially lose her license if she goes outside the IDSA standard or works with "LLMD'S" and now she's scared. That's pretty common. You either get a doctor who denies it's existence altogether or one that rushes you out of the office. Once in a while you'll get one that subtly tells you to seek out a doctor that can help you because they don't want to risk it. We can thank the IDSA for that.

RMSF is not the same as Lyme, but it is generally treated with doxy. It's pretty unlikely to have only contracted that. Especially if you've had symptoms consistent for Lyme for many years and live in an endemic area. In my situation, I've also had Lyme for years. I knew it even though I never tested for it. I never went to a doctor to diagnose or treat it because it wasn't causing me any significant problems. However, it became SEVERE after a reinfection and now I'm having an unbelievably difficult time with it. Far worse than I would have ever imagined it could get.

Don't worry too much about the delay of an appointment. Once Lyme is chronic, I think the time frame has passed for resolving things quickly for most people. February will be here before you know it. In the meantime you could try some herbal protocols and supplements for some of your symptoms. Have you been able to reach out to others in your area to find some more about your LLMD? Perhaps at support groups in the area?
Posted 11/8/2012 4:01 PM (GMT 0)
Summer3...I'm sorry to hear you are having such a hard time!! Thank you for the encouragement about waiting so long for an appointment. I was very confused by my lab report because everything said "antibodies not detected" except for the RMSF. She didn't really explain to me that these reports are complicated and don't necessarily say what they appear to be saying. Needless to say, I have NOT cancelled my appointment with the LLMD but am a bit concerned as to whether or not he's even going to be helpful. I do have a call into a LLMD who is also a rheumatologist at Tufts Medical Center in Boston. They schedule appointments on a monthly basis and I am expecting to hear from them this month for a December/January appointment. I'll have to search and see if there is a support group in my area....there must be!

I had years of illness that always had another explanation (Candida Albicans, Adrenal Fatigue, etc.) The one symptom I never told my doctor was the joint pain because I explained it away (my knees hurt because I need to lose weight, my elbows hurt because I carry babies around all day...). I don't remember being bitten by a tick and never suspected Lyme. Ironically, my son has been bitten several times during this time frame and has been consistently tested every six months...you'd think Lyme would have been on my radar! I finally mentioned the joint pain to her because by June, it had become unbearable.

I hope you have a great doctor who can help you. And I hope you have a good support group. My husband doesn't understand....he thinks that because I look okay and I am still functioning, that my symptoms are not as bad as I say.....
Posted 11/8/2012 4:43 PM (GMT 0)
Just one last word of warning, where did you find your LLMD? I hope it was from the Lyme disease association, a support group, Lyme organization or a fellow CHRONIC Lyme patient.

The large majority of infectious disease doctors and rheumatologists will say that they are experts in Lyme but in reality they do not believe that chronic Lyme exists and will not treat beyond 28 days of antibiotics. If you have residual symptoms these doctors jump to the conclusion that you have a psychological disorder, stress, fibromyalgia, chronic fatigue or aches and pains of daily living.

You might already know all that, but I just thought I'd warn you. I would hate for you to wait around for an infectious disease doctor who calls themselves a "Lyme expert" just to discover that it wasn't really a true LLMD. That's what I ended up doing in the beginning and it created a lot of aggravation.

I think a LLMD will be helpful. I had serious doubts and was highly skeptical about going to one when I first realized that I had Lyme. I was in disbelief that there was a controversy about Lyme until experiencing it firsthand. I thought a LLMD would automatically diagnose me with Lyme and require treatments that I couldn't afford. That was not the case with the one I see. It's also not my impression of the numerous top name LLMD's that I've met in person.

Good luck!
Posted 11/8/2012 5:23 PM (GMT 0)
My primary care doctor made the arrangements for the appointment. She gave me a list of six LLMD's in New Hampshire and chose this one because she said I'd be able to get in to see him the quickest. They did require me to make a detailed timeline of my medical issues before they would agree to see me....hopefully that's a good sign????? I hate the thought of waiting that long for nothing....
Posted 11/8/2012 5:27 PM (GMT 0)
I'm familiar with some LLMD's in NH. If you like you can email me by clicking on my email icon and I'll tell you if yours is on the list of "true" LLMD's.

Post Edited (Summer3) : 11/8/2012 10:32:26 AM (GMT-7)

Posted 11/8/2012 5:28 PM (GMT 0)
Ooo...thankyou!!!
Posted 11/8/2012 5:52 PM (GMT 0)
Hishorselover,
Something you can do to help your husband understand is go to another site, Lyme Spouse (www.lymespouse.org/) and see if you can get him to read some on that site.

It's incredibly hard for husbands to understand that their wives are this ill -as you said - because we look fine, and it's something that they nor a regular doctor can just "fix". Usually they don't want to think of their wife being seriously ill. I mean what would they do without us?? LOL! smilewinkgrin

Anyway, another thing you can do is to ask your doc the questions in the "New to Lyme?" thread on page 2 - The questions were gathered from a thread that ran a while back. All really great questions designed to help you understand what your doc believes, how s/he will go about some of the different aspects of treatment and some other things.
✚ New Topic ✚ Reply