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Joan Pandas Mom

? on lyme result too

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My son had the Igenx test done in Late July (7 weeks after his 1st IVIG). Another very knowledgeable and helpful mom on this site told me she would interpret the results as a positive. The LLD we saw twice did not rule it out, but didn't give a definite lyme diax. Any thoughts?

 

IGG Results

 

**23-25 kDA -

**31 KDa IND

**34 kDa IND

**39 kDa -

**41 kDa ++

58 kDa +

**83-93 kDa

 

IGM Results

 

**23-35 (all have kDa) -

**31 -

**34 -

**39 -

**41 -

**83-93 -

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Lyme or not... I think trying a Lyme like protocol to see if there is improvement would be well worth it.

 

Many of the children that have failed with PEX/IVIG or just pursuing Lyme treatment are seeing rapid improvement within the first 6 months of multiple antibiotics (after initial herxing). If you do go this route, I would also continue to test, test, test. Oftentimes a co-infection or Lyme results will turn positive as the die-off is stimulated and 'you'll' gain confidence one way or the other. You could also do provocation and look for Lyme DNA in the urine.

 

More than a handful of children after several months of Lyme protocol start showing a Bartonella rash and turn positive with lab results (not sure if the rash is from die-off or not). I can not remember if you checked for co-infections or not.

 

Wishing you all the best. Wendy

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Quite a few big name LLMD (Klinghardt, J, C)suggest a provocation with a lyme protocol and retesting if they suspect Lyme. Dr Klinghardt infact specifically explains the immunosuppressant nature of the Lyme spirochete and suggests a couple months of ABX therapy before testing for the first time even since Lyme is first and foremost a clincial diagnosis. A good LLMD would never rely on only bloodwork. He also explains how the spirochete is able to evade the immune response since it moves like a corkscrew atleast a 1000 times faster than our whiteblood cells. As a result our immune system maynot get a good "bite" for a mapping of the bacterium. Combine this property with the cyst form of this microbe and you have many bands that come up IND or indeterminate where the test found some scraps of evidence but not enough for the band to light up.The most infected patients will many times turn up with false negatives and indeterminates. Thats why Dr K has a multipronged approach to a Lyme diagnosis- clincial exam, ART and finally bloodwork. Many big name and even some little name LLMDs are following the same format.

SF mom, and Pacific mama to the best of my recollection, have wonderfully informative posts in the past on these issues.

Please do evaluate your situation thoroughly before you proceed and Im sure you will.

Jodie

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Quite a few big name LLMD (Klinghardt, J, C)suggest a provocation with a lyme protocol and retesting if they suspect Lyme. Dr Klinghardt infact specifically explains the immunosuppressant nature of the Lyme spirochete and suggests a couple months of ABX therapy before testing for the first time even since Lyme is first and foremost a clincial diagnosis. A good LLMD would never rely on only bloodwork. He also explains how the spirochete is able to evade the immune response since it moves like a corkscrew atleast a 1000 times faster than our whiteblood cells. As a result our immune system maynot get a good "bite" for a mapping of the bacterium. Combine this property with the cyst form of this microbe and you have many bands that come up IND or indeterminate where the test found some scraps of evidence but not enough for the band to light up.The most infected patients will many times turn up with false negatives and indeterminates. Thats why Dr K has a multipronged approach to a Lyme diagnosis- clincial exam, ART and finally bloodwork. Many big name and even some little name LLMDs are following the same format.

SF mom, and Pacific mama to the best of my recollection, have wonderfully informative posts in the past on these issues.

Please do evaluate your situation thoroughly before you proceed and Im sure you will.

Jodie

I think you explained it well. My llmd says he treats the patient not the test result. He is focused on symptoms and the patient's response to treatment, not antibody testing because it is not definitive. Of course it helps with insurance coverage for a picc line to have a positive test according to him.

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Thanks for these guys. The LLD, ND we did see thought we should try a different abx approach, maybe bicilin shots with another abx. You think it is worth a try? My son was on augmentin and biaxin when we saw the LLD in July. He had been on a abx for 7 months prior to that apt. and still is (14 months now) different abxs. What is ART? The LLD we saw wanted to refer my son to Dr. J, but my son is 16 and Dr. J CAN NOT take anyone over 14 or 15. I might see LLD in CT too. The LLD we did see said he has never seen Lyme effect only the brain, but he never says never. Since then, my son has lost 14 lbs too.

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ART is autonomic response testing, which falls in the generic category of "energy testing" (aka "muscle testing"). It is a ways of putting substances near your body and seeing how your body reacts, with muscles becoming strong or weak. It can be used to determine if supplements or drugs are good for you, and also if you have certain infections. It is much more reliable than most blood tests for lyme. It is much more popular in the "alternative" non-MD community, but some MD's are coming along to it lately.

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When you say substance, what does that mean? I find this concept very interesting but know little about it.

 

ART is autonomic response testing, which falls in the generic category of "energy testing" (aka "muscle testing"). It is a ways of putting substances near your body and seeing how your body reacts, with muscles becoming strong or weak. It can be used to determine if supplements or drugs are good for you, and also if you have certain infections. It is much more reliable than most blood tests for lyme. It is much more popular in the "alternative" non-MD community, but some MD's are coming along to it lately.

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When you say substance, what does that mean? I find this concept very interesting but know little about it.

 

ART is autonomic response testing, which falls in the generic category of "energy testing" (aka "muscle testing"). It is a ways of putting substances near your body and seeing how your body reacts, with muscles becoming strong or weak. It can be used to determine if supplements or drugs are good for you, and also if you have certain infections. It is much more reliable than most blood tests for lyme. It is much more popular in the "alternative" non-MD community, but some MD's are coming along to it lately.

You know how a lie detector test works where it measures the stress response of the body while a person is answering questions? The pulse quickens when someone is lying and the lie detector sensors measure this response. Well muscle testing is based on a similar premise-that when you hold a vial of lyme or a vial of dog hair and you react to it by your muscles getting weaker (you can't hold your arm up when the practitioner pushes on it, for example) this means you have a problem with it. At first I thought it was a little crazy but it was very helpful b/c the blood tests are so unreliable and so much of the lyme treatment is guesswork. We did muscle testing with our chiropractor, a naturopath, our biological dentist, a holistic nutritionist. My first experience with muscle testing was when I realized that I was allergic to our new Golden retriever puppy. I remembered that my chiropractor had told me that he was learning how to treat allergies so I called him up. I was not about to take antihistamines for the rest of my life in order to keep the dog so I figured it was worth the try. Not only was the chiro able to test for the dog allergy but he was able to treat it also with a laser. With one treatment I stopped reacting to the dog. He used a red laser light on acupressure points while I was holding the puppy-this calmed my body's response to the dog. WHen the puppy lost his puppy hair and got his adult hair I reacted again and had to return for a treatment that would desensitize me to the adult fur. It worked and we just got a second puppy and I did the same thing with my chiro.

Most recently we have tried the Ondamed machine which does something similar. You attach electrodes to the body and the machine tests for frequencies of bugs and other issues. Every bug has an energetic frequency. If you find a bug (lyme, parasite, etc.) the machine can send a frequency back to the body to annoy it and it either kills it or causes the bug to be expelled. Dr Bock in NY uses the Ondamed machine and I first read about it in Connie Strasheim's book about Lyme Disease. A local doctor has the machine and we just started using it to see if there was any lyme left. This doctor just started using it but said that the response by patients has been very promising so far. I think this is a very powerful machine, much more powerful than anything we have tried thus far. The machine costs about 25 k I am told.

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Thanks for these guys. The LLD, ND we did see thought we should try a different abx approach, maybe bicilin shots with another abx. You think it is worth a try? My son was on augmentin and biaxin when we saw the LLD in July. He had been on a abx for 7 months prior to that apt. and still is (14 months now) different abxs. What is ART? The LLD we saw wanted to refer my son to Dr. J, but my son is 16 and Dr. J CAN NOT take anyone over 14 or 15. I might see LLD in CT too. The LLD we did see said he has never seen Lyme effect only the brain, but he never says never. Since then, my son has lost 14 lbs too.

DS, 11, has been taking Bicillin LA shots for three months now. They do work wonders. Some helpful tips: Asks for numbing cream to apply thirty minutes before the shot, also ask for a scrip for Lidocaine patch to wear before and many hours after the shot. Take .5 ml of Benadryl before the shot to ease the Herx reaction. These shots can really hurt if the proper steps are not taken beforehand, but they are very effective and also they help protect against any possible strep infections as their life in the body is 14 days. My son gets his on Friday afternoon so that he can rest over the weekend!

 

Cobbie

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