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My wellness doctor uses kinesology and has tested that the kids don't need the Deseret Biological Lyme series any longer and I may only need 1 more month. He wants to do some lyme testing to see where we are in all that.

 

Igenex recommends the 6050 panel which is almost $500 I think. This includes the IgG and IgM but also some other testing. Igenex said that if your body is still producing antibiodies then you could get a positive test IgG or IgM without active infection. Does that sound like I'm interpreting this right? I don't want to spend $1500 that I don't have on tests that won't help to know if the lyme is gone or not.

 

My kids are doing very well, but they are not 100%. I have no idea how to know what is from lyme and what is from something else.

 

dd9 may have some genetic abnormalities that she will just have to live with that are doing very well with treatment or may not be genetic and will get better with treatment. I am very happy with her progress.

 

dd10 has had a huge setback from the recent strep so maybe her lyme is gone and she's dealing with PITANDS now. But she is slowly improving while not on abx which has never happened before. She still has a lot of anxiety and OCD but still much improvied. No more pain which was one if her primary lyme symptoms.

 

I still get very tired and have this buzzing in my head and shoulder blade. I attribute this completely to lyme but my doc says not necessarily. My joint pain is controlled by my diet so I'm not sure what that means either. I drop things all the time and I'm still feeling overwhelmed. But overall, I am feeling a lot better. I just had hoped to feel fantastic by the time I was done with lyme treatment, a cure all.

 

How much is damage caused by lyme but now needs to heal on it's own. Have I said all this before? I feel like I"m repeating myself, LOL.

 

We are still taking cats claw. I'm taking grapefruit seed extract and no longer react to it. I'm starting dd10 on GSE tomorrow to see if she has any reaction. By now I'm rambling. Do you have any thoughts for me? I don't want to take abx any more. But I don't want to stop treatment too quickly.

 

Frankly, I have no idea what to do next.

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Would you be willing to talk about gse briefly? I never really read about anyone else using this. My son takes this now at 250mg. It took us a year to get to this every day. A lower dose months ago would knock him off his feet. We are using for cyst form and bartonella. Kathy

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Would you be willing to talk about gse briefly? I never really read about anyone else using this. My son takes this now at 250mg. It took us a year to get to this every day. A lower dose months ago would knock him off his feet. We are using for cyst form and bartonella. Kathy

 

I have been trying it for cyst busting on myself. I only take it one day a week however. I herxed initially but now I don't notice anything. But I have not been taking it very long and it may be due to the lyme cycles. I have not tried it on my dd's yet. I don't have a doctor telling me how much to take so I'm just winging it based on what I learn here and there. I don't think we have bartonella at this point but I'm still unsure since we have never been officially tested.

 

Susan

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Oh I forgot, dd10 still shows heavy metals being a problem. Mine are clearning up. He wants her to beef up detox efforts which we have gotten slack on. I'm reading up on Klinghardt's protocol to see if I want to add something else in for this.

 

Susan

Edited by Suzan
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I use the CD57 test for myself. I have had many periods of feeling pretty good, only to relapse. Every time the CD57 predicted it as having too low a level. Every time I have relapsed.

 

Another test I think is important is the nagalase test. If the levels are too high, I would suggest that would also predict a relapse. Dr. K. feels below 0.80 is good and the people who sell GcMAF feel below 0.62 is necessary. With nagalase levels too high, the body won't be making macrophages like it should. While it's possible you've killed all the lyme and bartonella and babesia and FL1953 without adequate macrophages, seems like that might be hard to do.

 

Other measures are pulse (higher than 60, ask yourself why, and if infection is the reason) and body temperature a couple hours after waking (lower than normal, ask yourself why, and if infection is the reason).

 

Some things that have really brought back out the lyme wars in my body when I was doing well were BioPure lyme homeopathic nosodes, which tell the body to really fight the lyme, and heavy treatment of parasites during a full moon. In both cases I felt much worse until I treated lyme aggresively with substances. The problem with looking for antibodies like that $1,500 sounds like it will be doing, is lyme will trick your body not to bother fighting it, so you won't measure any. I don't think that would be a good test to judge. It would probably be more reliable if you did the lyme homeopathic nosodes completed just before the test, but still, who knows how reliable? Another "test" might simply be to treat parasites heavily on a full moon with lots of herbs and potentially antihelminthics, then take the lyme nosodes. If you're feeling well after all that, I think that would really say something as well.

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You might want to look into doing the lyme culture by Advanced Labs http://www.advanced-lab.com/spirochete.php It would set you back about the same amount of money but you'd have proof positive, with a photo of spirochetes instead of the doubts that come from looking for antibodies. Since you guys are off abx, this might be the way to go. Philamom has done the test. PM her if she doesn't chime in...

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Hi Susan. I hate all these unreliable tests. I did run the culture from advanced lab, so let me know if you have any questions. But you still have the issue of co-infections. The advanced lab test is for borrelia only. And it's not cheap - 595. But no denying a positive. In the beginning of our lyme treatment we ran the entire panel from Igenex. My daughter was only positive for the borrelia, none of the other TBI's. We than checked for bartonella through Specialty (division of quest) and it was positive.

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Yes, I am thinking of running the Advanced Lab test on my dd. Honestly, I'm scared to, and it is disappointing about it not determine co-infections, but the photo of the spirochete and 80% accuracy is pretty darn good, compared.

 

I have stopped treating my daughter- no herbs, and she has been off antibiotics April 1st, tried to put her back on for a week in May- awful.

I shared on here we were having extremely unacceptable behavior at home,

and after 3 1/2 years of treating her medically,

decided to try Riperdone- it has helped.

 

I'm afraid to jinx, and this is probably not popular on this type of board, but she has been wonderful since I stopped treating medically- happier and sweeter than we've seen.

Not 100%, but I've never really seen 100%. Is it possible for her to be completely 100%? I don't know.

 

I personally am in the thick of medical treatment with an LLMD- and when I took dd there last month for advice, really, it was left up to me- and my LLMD doesn't really treat children with Lyme, there are so many other variables to it for him.

I won't do more Igenex testing on her, although Igenex was clear positive on me, not on her, but the Lyme only bacteria bands present.

 

So, what to do? Keep leaving things alone, and have it good? Will it stay good?

 

Sorry Susan, which I had advice, I can sure relate.

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I am just wanting to add something to my previous post that I forgot to put ... While treating parasites and/or taking the lyme nosodes might be helpful in determining if lyme is still an issue (bad reaction, decline soon thereafter indicates still an issue), these are powerful treatments and reactions on probably would not make sense for anyone to do unless you felt you had lyme-specific treatments you trusted to work against the if that was the result. Otherwise, you confirm it's still a problem but end up in way worse shape without a remedy, that may not be what you would want. I mention in particular you talk about GSE and cat's claw, and my sense is for most this may help but not be really great against lyme ... I'm not sure what else is in your toolbox or how well they work for ya'all.

 

Now I just noticed you are using the deseret biologicals lyme series. I have never taken those but my pendulum has always thought they were very weak compared to the BioPure. Maybe that is specific just to me, or maybe the BioPure ones are better and stronger and you might consider those. For me they have been so powerful they are great but because they are so strong, I only take them when I have a large supply of GcMAF (my current ammunition these days).

 

Good luck with the tough decision here of what to do next.

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Sorry , hit enter by accident.

 

wanted to say i am still a novice to lymes.

 

but what i do know is that even if you stopped treatment..that i would continue with detox and treating the gut....

i think that there is a lag with the gut...and when you consider all the years :wacko:

just my 2 cents...

and maybe that is the final thing holding dd back?

the gut is a slow healling entity...just remind me of that when i am panicking :D

Edited by Fixit
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Just wanted to add a few thoughts.

 

My ds is being treated for parasites once again with Biltricide (prescription)3/day x2 days every 2 weeks for 2 months along with 'Graviola' and 'Cordychi'. She always seems to start some parasite treatment again when she sees my son biting his nails...not sure about the connection.

 

Also, wondered if any virus test panels have been done. It seems to be a common occurence and may be the piece of the puzzle not yet dealt with. I may have already asked you this... :)

 

My dh did chlorella/salmon oil for at least 6 months before seeing son's doctor and after doing a hair test from Doctors' Data (mostly paid by insurance) he showed no heavy metal issues. One less issue to deal with.

 

Best wishes in healing for you and your family Susan.

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Thank you all, you are fantastic. I love this site and I am very grateful that I have you to bounce these things off of. Your experiences are invaluable.

 

Doing my google research now to learn more and will probably have more questions later!

 

Susan

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Thank you all, you are fantastic. I love this site and I am very grateful that I have you to bounce these things off of. Your experiences are invaluable.

 

Doing my google research now to learn more and will probably have more questions later!

 

Susan

 

Hey suzan...as i was reading my reply i'm not sure i got the complete gist across. Maybe she is done with treatment(again idk,,you are the mom and you will feel that direction more than i would, along with your drs) so, when you do further treatments..if you are actually done, maybe you are just further irritating the gut and that is what needs to be healed. just a theory.

i hope that came across better.

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Hey suzan...as i was reading my reply i'm not sure i got the complete gist across. Maybe she is done with treatment(again idk,,you are the mom and you will feel that direction more than i would, along with your drs) so, when you do further treatments..if you are actually done, maybe you are just further irritating the gut and that is what needs to be healed. just a theory.

i hope that came across better.

 

Thanks!

 

I do wonder if dd9 is done with lyme treatment although she'll have to continue all the other supplement support. I don't feel that dd10 is, unless it's the heavy metals that are causing her current symptoms. I don't feel like I'm done with treatment yet.

 

But that said, I don't think our homeopathic treatment would be causing gut issues but of course I don't really know. Maybe the cats claw could be causing issues, I don't know. We are treating her gut with her other treatments and working on her protein digestion, etc.

 

I am trying to keep an open mind though to be sure I don't overlook anything!

 

Thank you!

 

Susan

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