philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
What do the IND bands really mean? Is it significant at all?
I'm stressed out. I had neuro-psychological testing done on my son and his IQ has dropped significantly. The doc who did the testing also said his eval was not consistent with ADHD which was what he was diagnosed with by someone different last year. I always new that wasn't it.
He's been in the gifted program and now struggles in school.
He is very disorganized, can't remember anything, cannot concentrate, and gets tired very easily.
I did have him tested through Igenex but he wasn't considered positive. We are treating him for mycoplasma though as his numbers for that showed an active infection.
I mentioned to my hubby and some other family members that I still think he has lyme and they all think I'm nuts. I just cannot shake the feeling about it though.
I was looking at his test results again, and while he isn't positive on any significant bands, he does come back IND on band 39IGG which is specific for lyme.
So what exactly does the IND mean? Is it like a weak positive? Or is it not significant at all?
We go back to the doctor next Wed and I'm not sure if I should push for a different type of testing or not.
I don't know. I'm just so worried about him. I think I'm gonna ask the chiro to do muscle testing on him at our appt tomorrow. He has been so helpful for me, maybe he can point me in the right direction.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Of course you will get different answers from different people....here is my opinion.
You want the right answer for your son. So, test for lots of things and treat for what looks most obviously wrong.
I saw Dr. F at Columbia University Medical Center. He tosses out IND bands...does not use them. He is a wise man trying to find the correct answer to this problem...so I also choose to discount IND bands.
If your son has high antibody titers to Mycoplasma, then maybe that is his problem. I once spoke to the assistant of Dr. Joel Baseman (mycoplasma expert): http://www.uthscsa.edu/micro/faculty/jbb/jbb.asp She told me that if the antibody titer was in the 200-300 at least (1:200 or greater) then possibly mycoplasma was an issue. Since my antibody titer was 1:64 (IgG) I knew it wasn't an issue for me.
I've been tested for lots of pathogens. See: http://chronicfatigue.stanford.edu/ and it looks like enteroviruses, HSV1, HHV-6 and others are problems for me. (I've also had at least 20 western blots done for Lyme at numerous labs--and Lyme may or may not be a problem--I certainly tested positive for lots of bands--but I also have antibody titers as high as the lab measures to Coxsackie B4 and Cpn).
I'd take a good look at his mycoplasma test result. If it is high, that might be his problem. If not, I'd keep looking. And even if mycoplasma is his problem, it may not be his only problem (unfortunately).
Good luck, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
That is pretty much what my LLMD said timaca....treat with what we know is going on. I guess that is the best approach.
I've become all OCD on getting to the bottom of what is going on with him to the point that it isn't healthy!
I know everyone will have differing opinions on what the IND bands mean as I have come across just that in searching online.
Thanks for the input...both of you.
We did start him on Biaxin. I have been paying close attention to his symptoms to see if anything changes for better or for worse.
Would treating myco make you herx? My guess was no, and I thought if that did happen, then we are dealing with lyme. Thoughts?
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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posted
I would guess that you could herx on myco treatment. Ask momintexas.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
philly~ I get a very defined herx reaction when I start antibiotics (which I've done several times and I always have a MAJOR problem--one put me in the ER with extended tachycardia --3 hours--other times I've been in tachycardia --among other problems--in front of my ID doctor at a major medical institution --recently named in the top 20 in the country--and I may or may not have Lyme.... but I sure get herx reactions!
I'm sure most people on this board would say I do based on the number of bands I've tested positive for and my herx reactions...but I may, I may not. I do believe with all my heart that I have chronic bacterial and chronic viral infections going on. And I think Lyme may be part of the mix but one cannot say for sure...I've never been culture positive for Lyme and I've never been CDC positive at SUNY, MDL or other labs (except Igenex).
And, by the way, when I'm given antivirals I also get a herx reaction. And when the viruses reactivate (which has been documented with labs) it is not a fun time and also involves tachycardia (among other things).
I do not have mycoplasma so I can't say from personal experience that I get a herx from that, but it is likely that I have chlamydia pneumonia (because I have antibody titers as high as the lab measures to both IgG and IgA) and when I'm given antibiotics I have a major problem (such that all my doctors say--don't travel anywhere for 2 weeks after starting these!)
This is a very long answer which says getting a herx does not mean you have lyme. It may indicate that you have a chronic bacterial infection. That's all you can assume...
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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"If enough of the complexes are formed, eventually it may be seen with the naked eye as a dark band. - Band intensity reflects how dark or wide it is. Controversy exists about band intensity.
Many would say the " +/-" equivocal ["IND"] bands are not significant. The problem I have with that, is that there are "-" negative bands. The lab has no trouble calling some bands negative. So they must be seeing something when they put "+/-" at some bands.
The only thing that makes sense, is that there is a little bit of that antibody present in your serum. If the "+/-" equivocal is reported on the borrelia associated bands, it is usually significant, in my clinical experience. This is a strong clue that I am on the right track.
Instead of ignoring these, they should be a red flag to keep pursuing a laboratory diagnosis. Giving patients 4 weeks of antibiotics (usually tetracycline, 500 mg, 3 times a day), will convert a negative or equivocal Western blot to positive in about 36% of cases.
As mentioned, if these positive blots are found by specialty labs, over 99% of those patients will respond to antibiotics." -- Dr C of MO
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
I may not be doing the right thing but I'm going with my instincts on this one. I've decided to put my own lyme treatment on hold and focus on my son.
I have a relative who sees Dr. C in Pa, and I was able to get in for my son to see her on Sept 8th. She is pretty much out of my price range financially but I will find a way to make it work. I always do! But that means putting things on hold for me.
I want someone with more experience with kids taking a look at my son. The drop in the IQ from 150+ to 104 has me greatly concerned. This is a kid who had all A's and was/is in the gifted program. At this point, I fear he won't make it throughout school if things aren't managed appropriately.
I feel confidant that Dr. C will be able to shed some light on the situation.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
OmegaBrite is available in kids dosages.
I PROMISE it will help him! It downregulates a LOT!
It is absolutely the BEST EPA-DHA-VitE formulation.
The Omega 6-Omega3 are way out of balance.
I have no connection to this product which my own son uses (ADHD/Seizures/Autism/learning disabilities - genetic - brain vascular alterations on MRA.)
OmegaBrite lowered my sis' CRP to its lowest level in years (late stage lyme...misdx'd orig. and given steroids before abx.= disaster).
She does not have neuro lyme or any neuro symptoms possibly because of Prozac...highest doses allowed...maybe protective (?)
Didn't stop the joint destruction though.
Mg (and Ca) are needed to make antibodies - our response. If Mg is deficient (it is) then the testing cannot possibly be accurate.
Ask for PLA2 testing (likely high) and PTH (also likely high) and vitamin D levels (could be dropping).
PROBIOTICS...always! Yougart and any other way you can get them into him.
Talk with his doc about simply applying some VIRGIN coconut oil to his skin after his bath/shower. We DO absorb things thru our skin. It sort of resembles crisco, but melts at body temp. or you can warm it slightly.
It is the caprylic acid in it that maybe key.
In the liver, caprylic acid converts (hopefully...if the liver is functioning fully) to BHB which crosses the blood brain barrier and enters the citric acid cycle in the mitochondria (powerhouses of the cells) where it helps to make ATP. ATP will drive Mg back into the cell.
This is how the "medicinal food" called Axona for Alzheimer's disease works. What I have described above is exactly what the pharm. company claims. It takes time...slowly...a few months before a turn-around begins.
Mg works best with B6. Talk to his doc about using topical MgCl and sublingual B6 (so the liver doesn't have to convert B6 to its active form (PLP/P5P).
His doctor can give you dosage suggestions.
God Bless.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
TY Marnie! I'm off to try and find it right now! I'm gonna call local health food stores and the pharmacy.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Gotta get OmegaBrite via the internet ONLY. Sorry, it is relatively expensive, but IMO worth every cent!
VCO is in many health food stores.
MgCl and sub B6 are avail. over the internet too...Amazon...but talk to his doc first for dosages!
We were typing at the same time. Re-read my post above.
Depending on his age and weight...
MgCl (tiny amt. applied topically - might burn a little for a very short time). This is what to look for:
Trace Minerals Research Liquimins Mega - Mag Liquid Magnesium, Low Sodium, 4-Ounce (Pack of 3)
and sublingual B6 25mg?(dissolves under the tongue fast and does not taste bad):
Absolutely MUST have doc's okay and guidance re: doses/timing of MgCl and sub B6 (these are not expensive).
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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James1979
Unregistered
posted
Marnie - do you think the Trace Minerals Liquid Mag is more effective than Ancient Minerals Mag Oil?
If it works to apply Trace Minerals stuff on a smaller body area, then I'm all for that! I think the mag oil feels gross.
Coincidentally, I just got the 3-pack of the TM liquid mag in the mail yesterday from Amazon. I've been adding it to my water once or twice a day. It tastes pretty yucky.
philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
Oh boo. I guess I'll order the Omega-brite online then. And I'll look into the other things you mentioned. I would never do anything potentially harmful to my little man! Thanks for the warnings about being cautious!
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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posted
I had my first western blot done through quest lab. I had two reactive bands IGG18 and IGM23. I started on doxy by ,y general practitioner. Three weeks later went to a LLMD. My Igenix test had only IND bands.
I continued to treat Lyme anyway in hopes that is what I really had. After four weeks of treatment by my LLMD a bulls eye rash showed up. I have had another bulls eye rash since. I have not been reinfected.
I have since learned that my LLMD didn't mail my blood to ingenix until Monday when it was drawn on Thursday. Which may have made a difference.
Anyway, my point is anyone can clearly have Lyme with IND bands. Best of luck and I hope the doctor you take him to is helpful.
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