Lyme too!

[Vinny123]

Lyme disease is diagnosed clinically based on symptoms, objective physical findings (such as erythema migrans, facial palsy, or arthritis), a history of possible exposure to infected ticks, as well as serological blood tests. When making a diagnosis of Lyme disease, health care providers should consider other diseases that may cause similar illness

[ajcire]

I have to ask.. if it's all just symptoms being treated and no real way to know if it's lyme or coinfections for those with negative tests, how do you REALLY know that is what you are treating? Isn't it possible you are treating some other infection or if you truly believe it's pandas for your child isn't it possible that the antibiotics are really just working for that?

 

Has anyone gone to Dr. Jones and been told it was NOT lyme?

[MichaelTampa]

In some real sense, you don't ever know. Antibiotics can indeed kill a lot of things, so you know you took these drugs and got that result. The rest is educated guesswork, perhaps. The good news is, it is a lot more important to find a doctor that will respond to symptoms with an effective treatment plan, than it is, say, to be absolutely sure what the name of the bug was that caused the problem.

 

But, for those really wanting to know, this is where I would have to put a plug in for the non-MD's out there, and energy testing of muscle testing or whatever you want to call it. There are NAET practitioners, acupuncturists, and other "alternative" practitioners that have vials infused with the energy of various bacteria and viruses. Energy testing cane demonstrate which ones you react to, and that can, in some cases, provide more specific diagnostic evidence regarding what particular bugs might be the problem.

 

I also thought the fact that I tested very strongly for andrographis and japanese knotweed (aka "resveratrol"), as if they were very beneficial for me, as more "evidence" that I had lyme, as these herbs have the reputation of being very good in helping treatment of lyme. Of course, they could have gotten this reputation from people who only thought they had lyme but really had something else, so, again, it is really just known that they helped people that had symptoms of lyme and thought they had lyme.

[lyme_mom]

I have to ask.. if it's all just symptoms being treated and no real way to know if it's lyme or coinfections for those with negative tests, how do you REALLY know that is what you are treating? Isn't it possible you are treating some other infection or if you truly believe it's pandas for your child isn't it possible that the antibiotics are really just working for that?

 

Has anyone gone to Dr. Jones and been told it was NOT lyme?

 

Yes. Dr. Jones will tell you when you are done and what symptoms do not have anything to do with Lyme. He takes pride in knowing the difference and he does not diagnose everyone with Lyme. He usually sees people when they have exhausted all other options so the likelihood of Lyme is much higher.

[lyme_mom]

In some real sense, you don't ever know. Antibiotics can indeed kill a lot of things, so you know you took these drugs and got that result. The rest is educated guesswork, perhaps. The good news is, it is a lot more important to find a doctor that will respond to symptoms with an effective treatment plan, than it is, say, to be absolutely sure what the name of the bug was that caused the problem.

 

But, for those really wanting to know, this is where I would have to put a plug in for the non-MD's out there, and energy testing of muscle testing or whatever you want to call it. There are NAET practitioners, acupuncturists, and other "alternative" practitioners that have vials infused with the energy of various bacteria and viruses. Energy testing cane demonstrate which ones you react to, and that can, in some cases, provide more specific diagnostic evidence regarding what particular bugs might be the problem.

 

I also thought the fact that I tested very strongly for andrographis and japanese knotweed (aka "resveratrol"), as if they were very beneficial for me, as more "evidence" that I had lyme, as these herbs have the reputation of being very good in helping treatment of lyme. Of course, they could have gotten this reputation from people who only thought they had lyme but really had something else, so, again, it is really just known that they helped people that had symptoms of lyme and thought they had lyme.

I agree with Michael. Muscle Testing or energetic testing is very reliable and can be another way to guide the practitioner as to what the most significant infection or other problem is. It can also help desensitize a patient to an antibiotic that is stressing them (we did this numerous times throughout the lyme treatment). It may look like voodoo (in fact we call it that jokingly sometimes) but it really works. Its based on the principle of a lie detector test. There are measurable responses to stimuli that a person has if you are tuned into them. That is what energetic testing is all about.

 

We did energetic testing numerous times and got the same results from different energetic tests by different practitioners. Most illnesses are clinically diagnosed. Look at ADD. Its based on symptoms and they dole out meds rather freely for that yet they almost never try to determine what the CAUSE of the ADD is. If you treat for lyme and the patient gets well it is possible that there was some other as yet undiscovered microbe or strain of lyme that was treated but I would think anyone who gets well would simply be glad they are well. I am just a lyme patient but after two years of dealing with Lyme I can tell you that the signs are pretty obvious even to me so a lyme specialist who has many years of experience treating lyme really knows what it looks like. A physical exam is always included and there are tell-tale physical signs in addition to the symptoms. Another point is that a lyme doctor will not continue to treat a patient for lyme who shows no clinical response to the treatment. They would start treatment and then retest for lyme after a month or two or longer, giving the immune system a chance to mount a defense. For adults with Lyme the labcorp cd57 test is a quick way to check on the status of the infection. A low score is indicative of an active lyme infection. This test does not work for kids apparently.

[Fixit]

I agree with Michael. Muscle Testing or energetic testing is very reliable and can be another way to guide the practitioner as to what the most significant infection or other problem is. It can also help desensitize a patient to an antibiotic that is stressing them (we did this numerous times throughout the lyme treatment). It may look like voodoo (in fact we call it that jokingly sometimes) but it really works. Its based on the principle of a lie detector test. There are measurable responses to stimuli that a person has if you are tuned into them. That is what energetic testing is all about.

 

 

Well if it is said that a pan/pit kid reacts by just being exposed to strep/illness wouldn't that be the same thing...

 

also, long story...i saw it on 20/20 or some show 4-6 years ago...

woman has dog since it was a puppy..dog is about 4-7...she goes to do dishes as usual...dog starts to bite her calf...

after about a week or so of this...she puts dog in other area to do dishes...on occasion forgets, and dog bites at calf...

about 10 months later, maybe more....she has cancer right where the dog was biting.....they use dogs for finding cancer and for epiliptic patients...they smell it coming on...

it all seems the same to me

 

 

We did energetic testing numerous times and got the same results from different energetic tests by different practitioners. Most illnesses are clinically diagnosed. Look at ADD. Its based on symptoms and they dole out meds rather freely for that yet they almost never try to determine what the CAUSE of the ADD is. If you treat for lyme and the patient gets well it is possible that there was some other as yet undiscovered microbe or strain of lyme that was treated but I would think anyone who gets well would simply be glad they are well. I am just a lyme patient but after two years of dealing with Lyme I can tell you that the signs are pretty obvious even to me so a lyme specialist who has many years of experience treating lyme really knows what it looks like. A physical exam is always included and there are tell-tale physical signs in addition to the symptoms. Another point is that a lyme doctor will not continue to treat a patient for lyme who shows no clinical response to the treatment. They would start treatment and then retest for lyme after a month or two or longer, giving the immune system a chance to mount a defense. For adults with Lyme the labcorp cd57 test is a quick way to check on the status of the infection. A low score is indicative of an active lyme infection. This test does not work for kids apparently.

 

lyme mom...the bold sentence seems concerning to me....what is a person to do in that case????...especially if in some cases i've heard it takes years to resolve, when you do know what is going on

Edited August 25, 2010 by Fixit

[P_Mom]

Lyme Mom,

 

I am interested in the "tell-tale physical signs (of Lyme) in addition to symptoms." Could you elaborate on that and let us know what the signs are that are present in addition to symptoms?.

 

Thanks!!

[lyme_mom]

I agree with Michael. Muscle Testing or energetic testing is very reliable and can be another way to guide the practitioner as to what the most significant infection or other problem is. It can also help desensitize a patient to an antibiotic that is stressing them (we did this numerous times throughout the lyme treatment). It may look like voodoo (in fact we call it that jokingly sometimes) but it really works. Its based on the principle of a lie detector test. There are measurable responses to stimuli that a person has if you are tuned into them. That is what energetic testing is all about.

 

 

Well if it is said that a pan/pit kid reacts by just being exposed to strep/illness wouldn't that be the same thing...

 

also, long story...i saw it on 20/20 or some show 4-6 years ago...

woman has dog since it was a puppy..dog is about 4-7...she goes to do dishes as usual...dog starts to bite her calf...

after about a week or so of this...she puts dog in other area to do dishes...on occasion forgets, and dog bites at calf...

about 10 months later, maybe more....she has cancer right where the dog was biting.....they use dogs for finding cancer and for epiliptic patients...they smell it coming on...

it all seems the same to me

 

 

We did energetic testing numerous times and got the same results from different energetic tests by different practitioners. Most illnesses are clinically diagnosed. Look at ADD. Its based on symptoms and they dole out meds rather freely for that yet they almost never try to determine what the CAUSE of the ADD is. If you treat for lyme and the patient gets well it is possible that there was some other as yet undiscovered microbe or strain of lyme that was treated but I would think anyone who gets well would simply be glad they are well. I am just a lyme patient but after two years of dealing with Lyme I can tell you that the signs are pretty obvious even to me so a lyme specialist who has many years of experience treating lyme really knows what it looks like. A physical exam is always included and there are tell-tale physical signs in addition to the symptoms. Another point is that a lyme doctor will not continue to treat a patient for lyme who shows no clinical response to the treatment. They would start treatment and then retest for lyme after a month or two or longer, giving the immune system a chance to mount a defense. For adults with Lyme the labcorp cd57 test is a quick way to check on the status of the infection. A low score is indicative of an active lyme infection. This test does not work for kids apparently.

 

lyme mom...the bold sentence seems concerning to me....what is a person to do in that case????...especially if in some cases i've heard it takes years to resolve, when you do know what is going on

I was responding to the concern that a lyme doctor would just treat without knowing whether or not the person has lyme. Once antibiotics are started a person will either improve or temporarily worsen (herx) and that would be a sign that the treatment is working. If absolutely nothing happens then they might try another antibiotic combination. If nothing happens they would think that lyme is not involved. If the patient reacts, which they usually do in some way, they will continue to treat until all symptoms resolve. I just meant that they are not careless about who they treat :-).

[mama2alex]

Thanks for updating us! I think the continuing discussion of Lyme is important on this forum. We are seeing an LLMD next week. My son tested positive for Bartonella almost a year ago, but we never really adressed it directly. He had IVIG last winter but then regressed this Spring. He just had his 2nd IVIG a few weeks ago, and we are hoping that this in combination with more appropriate antibiotics will heal him.

[lyme_mom]

I agree with Michael. Muscle Testing or energetic testing is very reliable and can be another way to guide the practitioner as to what the most significant infection or other problem is. It can also help desensitize a patient to an antibiotic that is stressing them (we did this numerous times throughout the lyme treatment). It may look like voodoo (in fact we call it that jokingly sometimes) but it really works. Its based on the principle of a lie detector test. There are measurable responses to stimuli that a person has if you are tuned into them. That is what energetic testing is all about.

 

 

Well if it is said that a pan/pit kid reacts by just being exposed to strep/illness wouldn't that be the same thing...

 

also, long story...i saw it on 20/20 or some show 4-6 years ago...

woman has dog since it was a puppy..dog is about 4-7...she goes to do dishes as usual...dog starts to bite her calf...

after about a week or so of this...she puts dog in other area to do dishes...on occasion forgets, and dog bites at calf...

about 10 months later, maybe more....she has cancer right where the dog was biting.....they use dogs for finding cancer and for epiliptic patients...they smell it coming on...

it all seems the same to me

 

 

We did energetic testing numerous times and got the same results from different energetic tests by different practitioners. Most illnesses are clinically diagnosed. Look at ADD. Its based on symptoms and they dole out meds rather freely for that yet they almost never try to determine what the CAUSE of the ADD is. If you treat for lyme and the patient gets well it is possible that there was some other as yet undiscovered microbe or strain of lyme that was treated but I would think anyone who gets well would simply be glad they are well. I am just a lyme patient but after two years of dealing with Lyme I can tell you that the signs are pretty obvious even to me so a lyme specialist who has many years of experience treating lyme really knows what it looks like. A physical exam is always included and there are tell-tale physical signs in addition to the symptoms. Another point is that a lyme doctor will not continue to treat a patient for lyme who shows no clinical response to the treatment. They would start treatment and then retest for lyme after a month or two or longer, giving the immune system a chance to mount a defense. For adults with Lyme the labcorp cd57 test is a quick way to check on the status of the infection. A low score is indicative of an active lyme infection. This test does not work for kids apparently.

 

lyme mom...the bold sentence seems concerning to me....what is a person to do in that case????...especially if in some cases i've heard it takes years to resolve, when you do know what is going on

 

The dog sniffing the cancer is a little different from the muscle testing but it is true that they can do that and really cool. They have mold sniffing dogs too. My sister had someone come test her house for mold and they brought a mold sniffing dog! Animals have a sixth sense. I don't know how to answer the other part of your question... about whether the muscle testing would work with a child with PANDAS because they would react to multiple infections whether they have them or not.

[JTs-Mom]

Yes. I attended a Lyme support group meeting in our area (VA) and there was a lady there with Lyme who took her children to see Dr. Jones because she was concerned about congenital Lyme and thought one of her sons was "just off" (as she put it). They had been tested through IGeneX and had some positive bands, but were overall negative by both CDC and IGeneX criteria. Dr. Jones told her that he did not see evidence of Lyme in either of her children.

 

I have to ask.. if it's all just symptoms being treated and no real way to know if it's lyme or coinfections for those with negative tests, how do you REALLY know that is what you are treating? Isn't it possible you are treating some other infection or if you truly believe it's pandas for your child isn't it possible that the antibiotics are really just working for that?

 

Has anyone gone to Dr. Jones and been told it was NOT lyme?