posted
Hi folks, I haven't been here in a really long while. My son contracted lyme when he was 4. He's now 15.
When he got sick we took him to Dr. J in Ct (what a beautiful man.) Dr. J had my son in his care for just over one year, and then felt comfortable that he no longer needed treatment.
In that Lyme tests look for the antibodies, rather than the Lyme, it's not surprising that his Lyme tests would show positive for a long time. -- But the curious thing is...
He had his annual blood test this week and his GP ran a Western Blot as she does each year. Last year he was positive on two bands. This year he was positive on 5 bands.
He is NOT SICK... He has no symptoms. He's a superior athlete and hasn't had more than one cold in the past 6 months.
So, I'm wondering if I should shrug off the test, or do something... I hate throwing away money, so I'd rather not run up to Dr. J, pay out of pocket to see him and have an IGenix if it's not necessary.
Does anyone have any thoughts on why my son might have tested positive on more bands than he did last year? Would puberty kick up anything?
I'm pretty scared of Lyme, but I really don't think he has it. He tells me everything and he has not been sick.
Any thoughts would be appreciated.
(No, I don't know which bands... I'm going to try to get my hands on the test results tomorrow.)
Again, thanks!!!
And Happy Fathers Day to the dads out there.
(Edited 6/18 @ 1:50 EST to conform to forum rules about names, etc...)
[ 06-18-2017, 01:50 PM: Message edited by: Thought I Was Done ]
Posts: 2 | From NY | Registered: Jun 2017
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- No. Another test is not necessary.
No. No treatment needed either.
Certainly, it's understandable to be concerned about the test.
I cannot answer the questions yet just want to say that since he's feeling well and also DOING very well, no treatment would be indicated.
I'd still avoid steroids, immune depressants or any "biologics" [as well as alcohol & even energy drinks as they stress the body so very much] in the future for whatever reasons and also just maintain a very healthful lifestyle.
It's so good to hear that he's doing well.
Be sure he's not downing energy drinks to feel better, though. But it sounds like he might tell you if he would be so tired as to do that.
I suggest calling Dr. J's office and just asking them. They would want to keep track of anything that impacts former patients, anyway and should be informed of this just as routine checking in.
They will likely have a good explanation for the test, too. They should definitely be told of this for scientific monitoring reasons. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- He could have had new exposures that his body is working on & his immune system just doing well with it, perhaps.
Or, maybe now that he is really humming his body is working to address the earlier infections in fuller impact. His body is working, though.
It's likely that he may test positive for years. It's not so much the test but the BODY that is the key here.
Hope you can talk with Dr. J's office and then come back and share their thoughts.
It's excellent that his regular doctor is so willing to continue to monitor this, shows good interest.
yet there is no test that really shows lyme is gone - it may never be "gone" [or it may as we have so much to still learn] but if the body can work to keep it in check, that's what matters.
Still, I would most definitely rest your mind in that at least no treatment seems to be needed beyond taking good care and enjoying life.
It's more important to ask a person how they feel / do than rely on any piece of paper, anyway.
Rather than see this test as [gasp! still?!?] you might see it as "Wow. This is amazing. Somehow, his body is doing an amazing job."
Now to find out just what it means, though. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
I agree with Kleeber. I wouldn't treat if he's not symptomatic.
Treating can cause gut dysbiosis (in case he takes drugs), and if you want him on antibiotics, his immune system will be weakened with antibiotics (because it destroys part of the beneficial flora that helps him remain symptomless).
Read a bit about dr Rau, from Paracelsus, Switzerland. He is categorical: in the area I live, most farmers are Westernblot positive, but only a very few people have symptoms, so these people never treat (they only got their blood tested for research purposes).
I would avoid treatment that kills spirochettes, but will increase some immune modulators, go on astragalus, clean diet etc. But no lyme treatment, unless symptoms appear.
Posts: 6199 | From Brussels | Registered: Oct 2007
| IP: Logged |
posted
Thank you Keebler and Brussels... I'll definitely be giving Dr. J a call. I'm still really curious about why he might have gone from 2 bands positive to 5 bands positive, but that may be a mystery I'll have to live with. I'd be curious to know if anyone out there has any thoughts on that.
Again, thanks all...
Posts: 2 | From NY | Registered: Jun 2017
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I may have thoughts on this once you tell us what bands he is positive on and whether they are IgG or Igm. I would also like to know if the same lab did the test last year and this year.
And, what lab did these tests?
I have been well for 12 years and am still symptom free. About 6 years ago, an ENT wanted to test me for lyme disease so I agreed to it out of curiosity.
I was positive on the IgM. That takes 2 bands if I recall correctly. I also had, I believe, 2 bands on the IgG, but that is not enough to be called a positive.
Since I was positive on the IgM, the CDC calls that a positive test and that was what was shown on the top of the test. It was Quest or LabCorp that did the test.
I suspect I will be positive for the rest of my life. But, I don't expect to be tested for lyme anymore by WB as long as I feel fine and even if I feel sick.
I really don't know why you are getting him tested every year. The WB test looks for antibodies to lyme as you know. So, why keep looking for antibodies every year?
Did Dr. J. tell you to do this yearly? If so, do you recall his reason?
My understanding is that the Western Blot is now useless for me since I once had lyme.
I was somewhat concerned with the WB results from the ENT so I went to my lyme doctor and he said, "Your ENT is weird." Then, he suggested a different test to see if I presently had lyme.
That test cost something like $500. It was a new test at the time. It was supposed to be able to distinguish "previously had lyme" from current lyme.
Because my symptoms resolved (it was a MRSA infection and 2 other infections all in my sinuses), I didn't go back to my lyme doc.
However, when I called to cancel the next appointment, I was informed that the lyme test results said that I had lyme again!
I then went to the lyme doc and we discussed it. He said that this was NOT supposed to happen.
My insurance would not pay anything toward that $500 lyme test. So, I would say I learned my lesson. I will NOT pay for any lyme test unless I have lyme symptoms from now on.
Somebody may THINK that they have a test that can tell a lyme survivor whether or not they currently have lyme, but I won't be paying for it any time soon. Six years have gone by since that expensive test and I got rid of my sinus infection by seeing a new ENT and have been fine since. So I KNOW that I do not have lyme.
I think that lyme is very tricky and there is much to learn about how the body deals with it and makes antibodies to it.
I watched a 2017 video of Dr. H. talking about his new book ("How Can I Get Better" or something like that). He said something that I had never heard before.
He said that lyme destroys that part of the lymph nodes that makes the IgG antibodies. So, that is why so few lyme patients ever test positive on the IgG portion of the WB.
In fact, he said a study was done and in 3,600 lyme patients, only 36 had a positive IgG. So, that means that only one in 100 lyme patients gets a positive IgG Western Blot.
This is the first time in all my years of being in the lyme world (at least 15 years) that I heard this explanation of the lack of positive IgGs.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic