I've been struggling with strange & unusual symptoms since I was bit and treated for lyme in 2001. I don't present with the usual swollen joints, but I've had strange aches, pains, anxiety and g.i. issues throughout the years. I've been through numerous tests and to numerous docs to try to identify the problem and my only explanation is lyme. I haven't been kept down by it and I'm still functioning well, but I still have these mysterious problems that keep recurring.
To make a long story short, last year my general phys. did bloodwork because I was having symptoms and I requested that he do a western blot and it came back positive (I will include the bands below). I explained that I've had issues for years and that perhaps this was the reason, so he treated me for 30 days with a low dose of Doxy. My issues settled and then again this Spring, I began to have gastro problems, lower back pain, etc. so he did another panel of bloodwork with all the usual tests and included the Western Blot again. He just called to tell me that the same bands are still coming up, but that he feels it's just taking some time for the test to come up normal again and will re check in another four weeks. No mention of doing another round of abx, just wait and see. He said that there appeared to be no sign of current infection, just prev. exposure and that it can be positive for years.
I don't know what to think...I know my next step is to see a LLMD, but I just wanted to get your advice because I know so many of you have been struggling with similar situations. If any of you could share your expertise with me, I would greatly appreciate it!
Here are my test results from last Spring-they are apparently the same or similar this year...(according to Lab Corp) Lyme Ab IgG P41 Ab. present IgM p23 Ab. present IgM P41 Ab. present Lyme IgM WB Interp Positive
Thank you all for your help on this.
[ 04-20-2010, 02:37 PM: Message edited by: KLSS ]
Posts: 69 | From PA | Registered: Aug 2005
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I think I would find a LLMD who will treat you for all you may have from and with Lyme.
If you had/have Lyme since 01 there are many markers besides the WB to determine active infection.
The neuro eye test. The assorted CD blood tests for inflammation.
Actual microscopy for identification.
To say neg with just the WB is not a good idea.
Esp. in the presence of bands in both IgG and IgM.
-------------------- 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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You need to find an LLMD. If you post on seeking a doctor someone will send you a list of docs near you.
Check out www.ilads.org there is a lot of information there. If you look at Dr. B's diagnostic and treatment guidelines you will learn a lot about ongoing treatment rather than the 30 day course of abx. You will also learn about diagnosis.
www.underourskin.com is an award winning movie that even made the Academy Award short list this year about the controversy surrounding Lyme Disease.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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sutherngrl
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Member # 16270
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Your doctor is an idiot!
First of all Lyme Disease is a clinical diagnosis; but on top of that you have a CDC positive IGM test. That is representative of an ongoing persistant infection.
If you have symptoms, you need to treat. Get a LLMD that knows how to treat you until you are well. A LLMD will treat several months beyond being symptom free to try and prevent a relapse.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Thank you all for your advice. Is it possible that I could still be infected and am only coming up positive on the Igm? From what I've read, the Igg would be the one to show up positive if it was chronic? Does the Igg have to be positive to better my chances of getting treatment and being taken seriously?
Posts: 69 | From PA | Registered: Aug 2005
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posted
You aren't going to be taken seriously in the standard doctor's office for chronic Lyme. I think that sutherngrl was trying to be protective of you when she said your doctor is an idiot.
The philosphy of this site though is that the strategy employed by the traditional medical community is useless for our conditions.
If you are looking for advice on this site, every response is going to be that you should find what is referred to as an LLMD immediately.
As for your symptoms they are identical to my own symptoms before things got really bad. I'm not saying that your aches and such aren't bad now, but the really wierd stuff started long after the g.i. and back issues presented.
Posts: 152 | From West Palm Bech, FL | Registered: May 2008
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Thank you for your response, Antro. I've been struggling with this for so long (is it lyme or isn't it, and all the strange aches & pains and everything else that lyme encompases) and I just wish that I could just get a definite answer and move on with treatment if that is the case. I know there are no clear cut answers, but I had hoped that the fact that my Igm has been CDC positive twice now would help my case...
Posts: 69 | From PA | Registered: Aug 2005
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
KLSS, regarding IgG and IgM:
Under "Quick Links to Popular Topics" at the top of Medical Questions, you will see a lyme doctor's explanation of the Western Blot. Here is a relevant part:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
So, based on this, lyme does not behave the way other diseases do regarding IgG and IgM. You have chronic lyme disease.
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I was not trying to be rude saying your doctor is an idiot. Its just that many of us have discovered that our regular doctors actually are!
If you suspect that you have Lyme Disease then seeking a LLMD is the ONLY way to get proper treatment. No matter what your test results say, LD IS a clinical diagnosis and only a LLMD can make that diagnosis.
You can drive yourself crazy trying to figure things out for yourself. Once you have an appt with a real LLMD, you will feel much better. It is always a relief to put yourself in the hands of a specialist.
Don't obsess over your test results! As you begin to treat with a LLMD, your test will probably become more positive; but the test should not determine your treatment.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Hi Sutherngrl, No offense taken...thank you for taking the time to listen and share your advice. I thought exactly that when my doc called and said that the test results were the same as last year and that it's no big deal because the test can stay positive for a long time. After some research and feedback from all of you, I'm finding that that is not usually the case with Igm and he probably has no idea what he's talking about...
Posts: 69 | From PA | Registered: Aug 2005
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Sorry to beat a dead horse, but isn't my doctor legally obligated to treat me since I am CDC positive on the Igm or am I expecting too much? Also, this doctor has ordered stomach x rays and an x ray on my back and I am concerned because I've had numerous x rays and scans throughout my body over the years and I'm worried about too much exposure to radiation, when it appears that I all ready have my answer. Does this seem realistic? I could really use some advice... Thank you all so much!
Posts: 69 | From PA | Registered: Aug 2005
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
I think you're expecting too much but that's just my opinion. My two PCPs have been idiots. And I really don't ever expect a mainstream doctor to not be an idiot anymore, lol!
I was worried about the radiation because I have 4 chest x-rays in two months. Because no one could figure out what was wrong with me. I asked the tech and they said it is really low radiation and won't effect me that much. But I don't know how truthful they were being.
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