I havent been on this board near as long as most have so I dont mean to offend anyone with this post, but Im a little lost with people and what they think of testing for the Lyme infection.
I will start off by saying that I have been tested numerous times and for the co-infections... Nothing, nothing has ever showed up not a single band. LLMD's still say treat and I have been feeling better.
However, one of my LLMD's continues to try and push test. For instance she seems to really want me to get a Spect scan. I ask will it change my treatment... answer "no". So why do it? Espicially if lyme is such a clinical diagnosis. I had an MRI done (no lesions) and am still paying off that so why would I have another test done that will just mount to my bills.
I do believe I will try to save up and maybe get an Igenex test ran but then I think what is the point if its negative we will still treat.
What really got me to write this thread was I just read a post were someone looked at there blood smear with a $10,000 microscope. Please dont get me wrong this is very interesting but if you know you are positive then why continue to shell out money for testing when it wont mean anything?
Is there something I am missing here... Im confused. I have had nothing but completely negative test LLMD's say treat, and from my progress I would guess they are right.
I dont know I guess im just looking for everyone elses view points on this. I mean would it be the same to walk into a LLMD's office get the clinical diagnosis and deny any type of testing. For me it seems like it would.
Maybe its just because I see we have all these test for lyme disease (western blot, Elisa, Lgg Lgm, PCR, SPECT, so on) but from all the reading i have done and following Dr.B's guidelines none of them really matter.
I dont know, I guess I would like to just hear others opinions on these test. Especially from anyone who has treated 100% clinically. By this I mean someone who has never had a test ran and treated or someone who has never had a band show up in their blood test like myself.
Thanks for your replies in advance!
Posted by Lemon-Lyme (Member # 19229) on :
You do have some interesting points there. And I agree, I'm not sure what the point is for you to get a Spect test, if it won't alter treatment one way or another. Not to mention, I think you get a nice dose of radiation from it too.
I understand the need for some tests... like I feel everyone should get a WB (ideally Igenex), co-infections, viruses, B-12, CBC, etc. done at some point. But I think people put way too much stock in the WB here. How a person reacts to treatment I would say is the better indicator.
I know why people want positive tests too, as everyone would like confirmation as to what they actually have, and if their treatment isn't going the greatest, they want to know if they are wasting their time. And in the case of many LLMDs, they probably also wonder if they are wasting their money for treatment.
So in some cases I can see why people do repeat tests, or spend money for expensive testing, as: not every doc will treat without positive tests, even some LLMDs, and it's human nature to want to know exactly what is wrong with you. The unfortunate thing is that most Lyme/co-infection testing pretty much stink.
Posted by sutherngrl (Member # 16270) on :
I started treatment with a totally negative WB; Because LD is a clinical diagnosis. However after 2 months of treatment IGM band 41 showed up. Nothing to get excited about, but one band nonetheless. A year after treatment I got an IGM CDC positive WB. This then backed up my clinical diagnosis.
How long have you been treating? Sometimes after treating for a while bands do start to pop up in some people.
Kill some spirochetes and their nasty little carcusis start floating around in your blood and then your body will start to produce an antibody reaction; and it might raise the chance of getting a positive band.
My LLMD says that no matter what the test says, that the treatment is still the same. Thats because LLMDs treat the patient, not the test. Thats what you want in a doctor!
How long have you been treating?
Posted by Ahodge01 (Member # 23569) on :
Sutherngrl,
Thanks for your response! I have been treating for one month. I think i am going to request another test after another month of treating.
Im not really worried about the test anymore however, like most have said it is nice to get a positive so you can be sure of what youre fighting.
Did you retest on ABX or off... One of my LLMD's wanted me to just go ahead and get the Igenex blood test on ABX. I dont know if this would make a difference.
Lemon-lyme,
I know what you mean... I have also had a pretty extensive vitamin panel ran... My b's were all fine B12 was around 860... But I had been supplementing them for awhile before the test.
My red blood cell Mg was only a little low, but my LLMD only wants me to supplement for a month.
The thing that was really low was my vitamin D... I didnt really understand what this meant? But I am waiting for my current CBC and kidney and liver function to comeback before I start supplement D cause i have had high calcium.
I would love to hear others opinions.
Posted by LymeXtu (Member # 24590) on :
This is an interesting discussion, my son's co-infection panel came back positive for Erlichiosis and negative for Babesia, our LLMD was so sure about Babesia because of his air hunger we treated for that anyway.
And as for the Erlichiosis my son could not tolerate Doxy so we have not targeted that but his symptoms have all but disappeared anyway, which is great and we wonder if just getting the Lyme and Babesia under control maybe his immune systom has taken care of the Erlichiosis by itself?
But then I look back at the $660.00 for the co-infection panel and wonder ???
Posted by sutherngrl (Member # 16270) on :
Ahodge, I re-tested while on antibiotics! I also tested through labcorp, not Igenex.
Many lyme patients have low vitamin D. I am taking prescription D to get mine up quickly, then I will take OTC D to maintain.
Posted by Marrit (Member # 25454) on :
Ahodge01, if I had all negative tests, no bands, I would suspect something else.
You might have Chlamydia Pneumoniae or some other organism:
Symptoms overlap, and treatment is similar, which might be why you are feeling better.
Posted by Marrit (Member # 25454) on :
LymeXtu,
I don't believe one has to have a different medication for every different bug.
A broad spectrum antibiotic could take care of several bugs at once, depending on what they are and dosage and response.
I've read stories where the Lyme was treated, then the Babesia, then the Lyme came back, then Bartonella showed up, then both Bartonella and Bb were resolved, only to have Babesia come back, and on and on.
If treatment is appropriate, one should NOT spend years spinning their wheels, going from well to sick and sick to well over and over again.
Read RF's post on her protocol. Hers is the most sensible treatment post I've seen on this forum -- and the most reasonable.
Posted by Marrit (Member # 25454) on :
Sorry, that should be "TF"'s post. She got well in under one year with a doctor who used Dr B's protocol strictly.
Posted by Lemon-Lyme (Member # 19229) on :
I think a large percentage of our population is deficient in D, not just Lyme people. But like others, I was deficient too.
I'm not sure why your calcium would be high though. You could get your parathyroids checked, maybe? I'm also not sure why your doc would suggest magnesium for one month only, if your mag RBC was lowish. Mineral testing is actually similar to Lyme, in that it's very inaccurate -- you can have a normal mag serum yet still be deficient. But if it shows up as low, it's most likely.... low.
For confirmation tests, if you don't want to pay for Igenex, you could try retesting through Stony Brook for the WB and have the doctor request all bands. Your insurance may pay for that one. And it's a good idea to retest co-infections after being on antibiotics for a while. Quite often one or more co-infections turn positive -- although you'll generally know this without a test too, when weird symptoms (like heel pain, air hunger, sweating, etc) also show up.
Posted by DaveNJ (Member # 17362) on :
Ahodge,
i was negative 10 times over 2 years but after 2 months of treatment i tested positive.
Keep the Faith, Dave
Posted by wealdsteve (Member # 25281) on :
Found lymextu post interesting, i also tested positive for Erlichiosis and bart but negative for babesia but since treating these my air hunger has got much worse and with other symptoms i am sure i will soon be treating babesia.
Posted by healthy2009 (Member # 21794) on :
When I was first tested in 2009 through Labcorp I had IgG p66, IgG p41 and IgG p39 came +ve, IgM p41 and p23 + ve then I went to an LLMD who did the Igenex and Fry labs. My result wat -ve for Babesia and Fry labs showed some bacteria that was concluded as Hemobartonella or Hemoplasma.
I took abx for 7 months then my LLMD did the test through Labcorp this time. My WB IgG of p66, p39 and p18 came +ve and WB of IgM p41,39 and 23 are all -ve.
So my LLMD says I do have Lyme disease for sure.
Posted by healthy2009 (Member # 21794) on :
I was taking abx when I was tested for the second time through Labcorp.
So after 7 months of taking abx
My WB of IgG p66,p39 remained +ve,IgG p41 gone and new band IgG p18 showed up.