I was recently diagnosed with Lyme Disease, after many years (perhaps as many as 40)of seeking help for a variety of symptoms. My LLMD tested me through LabCorp for Lyme. I had IgG P23 present, and then for the IgM section, I was positive for IgM's 41 and 23. LabCorp called this negative for IgG, and positive for IgM. They reported my case to the state health dept, as a positive.
I took my results to a mainstream ID doc for a second opinion, who told me that these results didn't make sense since my condition is chronic, but my results are positive for an acute, but not chronic infection. His conclusion was that, even though he agreed my clinical presentation was consistent with Lyme, I do not have Lyme Disease, and should not be treated with antibiotics.
Other abnormalities were: elevated Immunoglob M, Thyroid antibodies, Mycoplasma Pneumonia, EBV, Parvovirus, Vascular Endo Growth Factor, HHV6, Chlamydia pneum, candida, fibrin Monomer, and a couple parasites (stronyloides, etc.).
I also have two children who may have congenital lyme, and have sensory processing, and multiple other issues. My daughter was positive for band 23, and my son (who has more symptoms than my daughter) was negative on both LabCorp and Igenix, though he did have some positive bands, that were non-specific to Lyme.
I started down the road of treatment with the LLMD, but immediately had elevated liver enzymes, and became concerned about the risks and benefits of taking this path. In our town, we have another doctor (I won't mention names or specifics about his protocol), but he treats Lyme without using much in the way of antibiotics. His philosophy revolves more around getting to a place of harmony with the bugs, so you can live with them without them causing harm.
I have tremendous fear of putting my, and my kids bodies, through the hell of Lyme treatment, and not getting better at the end of it. I'm concerned about killing off all the good bacteria, which can itself, take a major toll on the immune system. I want us all to heal, but am wondering if we can really be cured...especially since I've been sick soooo long.
Also, when I went to the mainstream ID doc, he told me that the multiple co-infections that my LLMD wants to treat me for, are not current infections, but are instead IgG results which just indicate that I had these bugs at one time, and my body mounted an immune response to them, but they are NOT current infections.
I would love to hear any thoughts or advice on any of this. Should we consider switching to the doctor that doesn't use antibiotics? He has a great track record with Lyme. Or should we continue with the LLMD who diagnosed us, and wants to use lots of antibiotics? Also, what do you make of what the mainstream doc said about my Lyme results and co-infections being past infections I shouldn't be concerned about.
We are just beginning this journey, and I really need help!
Thanks!
polliwog
Posts: 6 | From Redmond, WA | Registered: Jul 2011
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You can learn a lot from reading other threads on this site.
Our test result was IGM positive and IGG negative. Our ID doctor said it was not Lyme.
The ID doctor did not help us. Our LLMD's treatment did help. Treatment for coinfections helped us.
We tried the herbal route after elevated liver enzymes from antibiotics. That was unsuccessful.
Each person's case is unique, and hopefully another contributer who has dealt with this for many years, like you have, can give a recommendation.
You might consider getting the book: 'The Lyme Disease Solution' It is available from several sources, including Amazon.
Good Luck!
Posts: 43 | From The South | Registered: Jan 2010
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
Don't be scared of the antibiotics. That may be how you end up getting well from this. What I would suggest is that you very quickly learn what it takes to get this disease manageable. And, yes, even go into remission and/or cured.
Yes, antibiotics can cause damage on their own. But, this is preventable with Florastor and a good quality probiotic. Also, diet is very important. No gluten and very, very little sugar.
Read up on Dr. B's guidelines. They are the key to getting well.
My first ID doctor is supposedly the best in the area. But, she's a crackpot who has a hidden agenda. The second one I saw was much better but also said I didn't have anything that he could find and wished me good luck.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
Sorry, I should've mentioned that you may be chasing mycoplasma and/or strep too, depending on the ages of your children.
Vitamin D. Look into levels.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi:
Part of the reason the IDSA is against Long Term treatment is the risks and side effects of the drugs.
Our daughter went 8+ months b/4 a proper diagnosis and treatment.
Even after treatment started things did become worse.
Probiotics and replacing good bacteria is managageable BUT it has to be done daily or even twice a day, depending on medications.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
ID docs will tell you Lyme isn't a chronic infection. I think it's odd that with Lyme symptoms and a positive Lyme test he would still tell you you don't have it.
Whether you go abx or alternative is really more up to you. I did two years of abx, then switched over to alternatives. I am well today and had Lyme for over 30 years.
If you haven't seen it yet (it sounds like you are a bit familiar with the Lyme controversy), you might want to watch Under Our Skin. It's a documentary on whether Lyme is chronic or not. Available on Netflix.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Thanks for your prompt, thoughtful replies. I'm just wondering if there is a consensus about how to go about treatment. Has anyone had success with protocols that don't use antibiotics? We live very close to Dr. K, and I have made appointments for my kids to see him, but am still wondering if we should start with antibiotics through the LLMD for the first couple years, then go to Dr. K after. I would love to hear from anyone who has been treated by Dr. K.
Thanks!
Posts: 6 | From Redmond, WA | Registered: Jul 2011
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posted
igm response is common with chronic lyme. this is misunderstood by mainstream docs. there is a section of Dr B's guidelines that explains this, i will look for it. my opinion: your ID doc is wrong, you have lyme. as far as the treatment, i would start with abx to see what your/their response is. you can always move to alternative treatments if there is no improvement or if the side effects outweigh the benefits.
Posts: 236 | From Zionsville IN | Registered: Jan 2011
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posted
"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."
Posts: 236 | From Zionsville IN | Registered: Jan 2011
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
When it comes to Lyme disease, a positive IGM may mean a more chronic infection.
In most disease it means an acute infection but in Lyme it is different
Every time the bacteria changes forms, your body produces more IGM thinking that there is a NEW pathogen. That is why many only have positive IGM.
Hope that makes sense.
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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