posted
...but I still have a tough time believing this. He has had developmental delays since an infant, but always seems to reach milestones. Always a month (or three) behind though. We have had him tested for autism, but the doctors are confused because he is so social, gives great eye contact, etc. However, he has issues with repetetive movements and delayed speech.
Is this definitley Lymes or something similar? Could he just have delays or maybe even autism? It's so hard to believe anything because no one knows for sure...
Posts: 18 | From CT | Registered: Jan 2011
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posted
Yes - the specific bands that he tested positive are:
18 (+), 30 (+), 34 (+), 39 (+), 41 (+++), 58 (+)
It's just that we've seen so many doctors and clinicians, including a LLD doctor, and it would be nice to know exactly what he has. I'm sure I'm not alone in this feeling....
Posts: 18 | From CT | Registered: Jan 2011
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22: Possibly a variant of outer surface protein C.
23-25: Outer surface protein C (osp C).
28: An outer surface protein.
30: Possibly a variant of outer surface protein A.
31: Outer surface protein A (osp A). 34: Outer surface protein B (osp B).
37: Unknown, but it is in the medical literature that it is a borrelia-associated antibody. Other labs consider it significant.
39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all.
41: Flagella or tail. This is how Borrelia burgdorferi moves around, by moving the flagella. Many bacteria have flagella. This is the most common borreliosis antibody.
45: Heat shock protein. This helps the bacteria survive fever. The only bacteria in the world that does not have heat shock proteins is Treponema pallidum, the cause of syphilis.
58: Heat shock protein.
66: Heat shock protein. This is the second most common borrelia antibody.
73: Heat shock protein.
83: This is the DNA or genetic material of Borrelia burgdorferi. It is the same thing as the 93, based upon the medical literature. But laboratories vary in assigning significance to the 83 versus the 93.
93: The DNA or genetic material of Borrelia burgdorferi.
In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.
These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93.
This is true regardless of whether it is IgG or IgM.....
+++ Updated comments:
The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93.
--------Dr C
Really wondering what LLD dr would say that was NOT lyme?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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The LLD DID say he had Lyme, but that was before he even had the bloodwork. I guess the bllodwork confirmed his diagnosis.
Thanks for the reply. It's just hard to beleive that he has it. My wife got tested too on WB but she came back all negatives.
Do you think there is a good chance that his developmental delays and repetetive behaviors is caused by the Lyme?
Posts: 18 | From CT | Registered: Jan 2011
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posted
Is that common of infants who have Lyme?
Posts: 18 | From CT | Registered: Jan 2011
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I'm assuming you guys are seeing Dr. J. How did you end up suspecting Lyme for your son in the first place? Was there a tick bite for him? Or did you have tick bites in your past? (or do you have any Lyme symptoms which may suggest you were bitten?) Are you thinking this is congenital (passed from you) or something your son contracted on his own somehow?
On the surface, it sounds like it could be Lyme. You live in CT. Many people in your state have been exposed and don't know it. So there's that.
Then there's the fact that your son has these symptoms. They could be due to Lyme or not due to Lyme. But given the Western Blot AND the fact that you live in CT, I think you at least need to suspect this could be Lyme.
For what it's worth, I was bitten by a tick when I was 5 years old and then got an extremely high fever while tick was attached. In the same year, I developed some bizarre habits that I believe were related to the bite. I had full-blown OCD (thought my parents would die if I didn't do certain acts, like repetitive staring at objects or prayers). OCD can just occur in the general population, but I think it's possible the bite triggered this stuff. In my late teens, when I was finally treated with antibiotics, the OCD got really really bad again, after being completely gone for awhile, so that again leads me to believe it could have been from infections, the OCD.
So the abx could be bringing out the behaviors more. Have anyone mentioned OCD, or has he been evaluated for that? OCD is influenced by genetics too, but infections can probably make it much worse.
I also seemed to have tics, like when I was a baby I would obsessively smell my blanket, so that was obviously before the tick bite. And I had scrunching of my eyebrows.
Chances are that if it's OCD, he will always deal with it to an extent, but it's really not THAT bad if it's mild....like right now I simply live with mild OCD urges and if anything, it's an extremely minor inconveinence that I deal with, without taking meds like Prozac.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Thanks again for the detailed responses - it means a lot. We are seeing Dr. J and he is on medicine for the past two and a half months. He actually got a lot better these past 6 weeks, but then this past week many of his old repetetive habits reappeared. We called today to see if perhaps he needs a medicine change? Could he have plateued?
Also, is this going to be a lifelong illness, or can he ever be fully healed with the right dosage and length of medicine?
Posts: 18 | From CT | Registered: Jan 2011
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Anyways, my point is basically that it could be Lyme or not, but my experiences lead me to believe that the infections can/might play a role in bringing strange behaviors out. However, if it is also influenced by genetics for him (as in, if it is genuine OCD), then treating the infections may or may not fully resolve the symptoms of the repetitive behaviors. When something is genetic like OCD, many environmental factors can bring the symptoms out.....so Lyme could be one of many things triggering it, and fully eradicating Lyme may only greatly help, but not cure, the symptoms. Hope that makes sense.
As far as the speech delays, I can't speak for that. But my hope would be that treating the Lyme would help.
I guess what I'm trying to say is that I understand your hesitation in believing it's all due to Lyme. It may very well be many factors, including Lyme. So in that case, you would be right and wrong at the same time, for being skeptical.
I think there is probably some Lyme exposure, somehow, but it's just a matter of figuring out how far treating Lyme will or won't take you. And I suppose the only way to figure that out is to try? I definitely don't have all the answers.
Posts: 4590 | From Midwest | Registered: Jun 2008
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
I am sorry your son is having these behaviors. I know how frightening they are to watch. My 6 year old son has similar behaviors that started 3-4 years ago when we think he was infected with lyme.
Eye blinking tics, then shoulder shrugging and other tics, now mouth movements. This has been going on for 3 years since he became infected. He also has sensory issues and OCD repetitive behaviors which have improved with lyme treatment. I am trying to get to the bottom of the tics. I think it is related to infections which have been able to flourish due to the lyme. Or it could be from the Lyme itself, or even a virus. It is so hard to figure out.
I unknowingly had lyme when I delivered my 3 children so I could have transmitted it to them as well. But at age 2, my twin boys had a few tick bites and then things became worse. Prior to the tick bites they did have delayed speech issues, which could have been from congenital lyme.
Your wife's negative WB test really doesn't mean much. The longer you have had Lyme, the less likely you will get a positive result. I'm sure you know not to rely on testing for ruling out lyme. But it is very significant that your son has symptoms along with a very positive test. I know what you are feeling...I went through it with each of my 3 young children. It will get better.
There are herbal treatment options which I wish I had explored before giving my children antibiotics, as now we are busy trying to heal the gut from the high candida and dysbiosis resulting from 2 years of antibiotics. The herbs really helped us a lot (more than abx) after we plateaued on antibiotics. We are pretty sure one of mine is lyme-free now and the others have a very low level and hopefully will be there soon.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I'm not really sure about the meds. As I said, sometimes the antibiotics would actually make the symptoms worse for me, and at a certain point, I just needed to switch antibiotics. So I couldn't say if it is a "kill off/herx" or if it's just that the meds are no longer working, or if it's just that the meds are creating a vicious cycle of killing and adding toxins through that process, and that contributes to the symptoms. For me, when my OCD got bad on Doxycycline, the only thing that made it better was using a different antibiotic (aka, stopping the Doxy).
So I would see if this is just a bad week or two....and if it then gets better again, maybe it was just a bad week.....but if it doesn't get any better, you would need to switch meds (or just stop, whatever Dr. J thinks).
When you ask, "is this lifelong?" I'm not sure if you mean Lyme or these issues. I don't think it's practical to treat Lyme forever, and at a certain point, you will have treated all the Lyme/co's you are gonna treat, and it's time to stop. It is hard to know where that point is.
My whole reason for bringing up OCD (whether or not your son has it, which is irrelevant to my point....my point is moreso about genetic tendencies that are influenced by environmental factors, OCD being one of them)....is to say that you can kill the Lyme, but some symptoms may linger for life, just on a much smaller scale. However, I don't really consider that a bad thing. Because if a symptom is easy to work around, it isn't the end of the world, on it's own. Like just because I feel the need to check that the oven is off 10 times before I go to bed, doesn't mean that my life is somehow not as rich. It isn't something that holds me back from my dreams...there are worse things. But OCD that takes an hour or two of your day is a problem. So that's my point. Notice in both cases, it's not like it's ever totally gone.
Lyme is curable, for the most part....you won't be treating Lyme forever, but then it's a matter of what symptoms are left.
Gotta go for now....will check back later.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I'm sure you have heard by now that there is a cycle in lyme disease which involves getting worse when the germs are being killed off. So, don't worry too much at this point. Your son is still early days in his treatment. Got to have patience with this disease.
Glad you are getting good medical help.
Best of luck.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I've asked Dr. J's receptionist to expalin our issue and get back to us. We'll see how it goes....
Posts: 18 | From CT | Registered: Jan 2011
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