Spoke with Immunologist

[melanie]

She said no (in so many words)feels that some lyme drs are making a fortune off of this and since danny doesnt have classic PANDAS he has pandas like syndrome.She also said testing for all of the things I asked for wouldnt make sence be

cause hes recieveing IVIG.

 

I have included her answers to my email I do trust her and he is getting bettter.

 

 

She responds with the following

 

 

I do not think that he is vulnerable to infection. It is more likely that he is sensitive to infection induced immune activation. If zithromax is more effective, he is most likely to have activation of innate immune responses mediated by NF-kB pathway, since zithromax is a hibitior of NF-kB signaling pathways. You may just continue zithromax and d/c Omnicef. I wanted to see which way will be effective. Omnicef is an inhibitor of GABA mediated signaling and worked for certain neurodegenefative conditions (probably including Lyme disease). If Gamunex works better, this is most likely associated with the fact how the brand retain intact IgG molecule as we discussed at his last clinic visit. If this is true, Optigam will be most effective, although the infusion volume will be twice as much as Gamunex.

 

I do not think that a higher dose of IVIG will also make much difference either. You seems to have forgotten that he does not have classical PANDAS. In his case, symtoms will return in 3-4 weeks later. Even for classical PANDAS, it is not clarified that high dose of IVIG is truly curative, although Lyme doctors seem to make a lot of money by promoting such an idea.

 

Interesting about the Optigam?

 

Melanie

[JAG10]

I do not think that a higher dose of IVIG will also make much difference either. You seems to have forgotten that he does not have classical PANDAS. In his case, symtoms will return in 3-4 weeks later. Even for classical PANDAS, it is not clarified that high dose of IVIG is truly curative, although Lyme doctors seem to make a lot of money by promoting such an idea.

Melanie,

I don't understand. How are these lyme doctors she speaks of making a lot of money by promoting a higher dose? Wouldn't they only make more money by promoting more frequent treatments rather than promoting a higher dose less often?

[melanie]

I do not think that a higher dose of IVIG will also make much difference either. You seems to have forgotten that he does not have classical PANDAS. In his case, symtoms will return in 3-4 weeks later. Even for classical PANDAS, it is not clarified that high dose of IVIG is truly curative, although Lyme doctors seem to make a lot of money by promoting such an idea.

Melanie,

I don't understand. How are these lyme doctors she speaks of making a lot of money by promoting a higher dose? Wouldn't they only make more money by promoting more frequent treatments rather than promoting a higher dose less often?

 

 

I assume tha there is mds out there who dont take insurance Most people have to pay Out of pocket for the IVIG and its about 15,000.I dont know but thats a good question

 

Melanie

[lyme_mom]

I do not think that a higher dose of IVIG will also make much difference either. You seems to have forgotten that he does not have classical PANDAS. In his case, symtoms will return in 3-4 weeks later. Even for classical PANDAS, it is not clarified that high dose of IVIG is truly curative, although Lyme doctors seem to make a lot of money by promoting such an idea.

Melanie,

I don't understand. How are these lyme doctors she speaks of making a lot of money by promoting a higher dose? Wouldn't they only make more money by promoting more frequent treatments rather than promoting a higher dose less often?

There are many doctors who believe that Lyme doctors are quacks because they do not understand Lyme Disease and why it is necessary to treat patients for so long with antibiotics. We have used three different lyme specialists over the past two years and they are some of the best doctors we have ever used. I have been extremely impressed by these doctors-how smart they are and how committed to their patients they are. We chose these doctors because they know how to get lyme patients well and that is all we care about. These lyme doctors put themselves at risk by treating lyme disease and they are not in it for the money. Look at Dr. Jones of New Haven and Dr. Jansek of North Carolina, both of whom have been put through the ringer by their respective medical boards. Their determination to treat those who are sick with lyme is really admirable and has cost them a fortune. Like anything else I am sure there are bad lyme doctors out there but we haven't met them yet.

[EAMom]

Yeah...I don't get how a lyme doctor is making more money with high dose IVIG (vs. monthly low dose)....especially since a lyme doc wouldn't necessarily have an interest in an infusion center. It's not like these docs get "kick-backs" if they refer a patient for IVIG.

[lyme_mom]

Yeah...I don't get how a lyme doctor is making more money with high dose IVIG (vs. monthly low dose)....especially since a lyme doc wouldn't necessarily have an interest in an infusion center. It's not like these docs get "kick-backs" if they refer a patient for IVIG.

This is very confusing to me b/c the lyme doctors I know are treating PANDAS with antibiotics, not IVIG. In fact, one lyme literate doctor told me that doing IVIG on a child with lyme is like throwing a glass of water into an ocean (if the tick-borne illness is not under control first). The lyme doctors believe that you need to use antibiotics to treat the various infections that can cause PANDAS symptoms: strep, lyme, bartonella, babesia, mycoplasma, etc.

[Fixit]

Hi Melanie,,

 

It is good to find someone you trust. It is hard to go it alone. It is good to work with someone you like enough, as they are taking care of your child.

I do hope that there is always an open mind...i think doc k and t have said they are always learning....and there is always that first person who doens't fit the mold and opens new doors..maybe its your child or mine...boy would i like to fit the mold though.....and with this condtion JIMHO i don't think there is a mold, maybe more so than with any other condition.

It is good to have a different opionion too as it may make us look at things in different ways.

It is AWESOME your kid is getting better!!

 

i guess that leads me to...what is meant by he is pandas like or he doesn't have classic pandas?

Again, to me, its all pits and pands with a rainbow of colors in the spectrum or maybe just a shade of one.

 

 

 

She said no (in so many words)feels that some lyme drs are making a fortune off of this and since danny doesnt have classic PANDAS he has pandas like syndrome.She also said testing for all of the things I asked for wouldnt make sence be

cause hes recieveing IVIG.

 

I have included her answers to my email I do trust her and he is getting bettter.

 

 

She responds with the following

 

 

I do not think that he is vulnerable to infection. It is more likely that he is sensitive to infection induced immune activation. If zithromax is more effective, he is most likely to have activation of innate immune responses mediated by NF-kB pathway, since zithromax is a hibitior of NF-kB signaling pathways. You may just continue zithromax and d/c Omnicef. I wanted to see which way will be effective. Omnicef is an inhibitor of GABA mediated signaling and worked for certain neurodegenefative conditions (probably including Lyme disease). If Gamunex works better, this is most likely associated with the fact how the brand retain intact IgG molecule as we discussed at his last clinic visit. If this is true, Optigam will be most effective, although the infusion volume will be twice as much as Gamunex.

 

I do not think that a higher dose of IVIG will also make much difference either. You seems to have forgotten that he does not have classical PANDAS. In his case, symtoms will return in 3-4 weeks later. Even for classical PANDAS, it is not clarified that high dose of IVIG is truly curative, although Lyme doctors seem to make a lot of money by promoting such an idea.

 

Interesting about the Optigam?

 

Melanie

[melanie]

Hi Melanie,,

 

It is good to find someone you trust. It is hard to go it alone. It is good to work with someone you like enough, as they are taking care of your child.

I do hope that there is always an open mind...i think doc k and t have said they are always learning....and there is always that first person who doens't fit the mold and opens new doors..maybe its your child or mine...boy would i like to fit the mold though.....and with this condtion JIMHO i don't think there is a mold, maybe more so than with any other condition.

It is good to have a different opionion too as it may make us look at things in different ways.

It is AWESOME your kid is getting better!!

 

i guess that leads me to...what is meant by he is pandas like or he doesn't have classic pandas?

Again, to me, its all pits and pands with a rainbow of colors in the spectrum or maybe just a shade of one.

 

 

 

She said no (in so many words)feels that some lyme drs are making a fortune off of this and since danny doesnt have classic PANDAS he has pandas like syndrome.She also said testing for all of the things I asked for wouldnt make sence be

cause hes recieveing IVIG.

 

I have included her answers to my email I do trust her and he is getting bettter.

 

 

She responds with the following

 

 

I do not think that he is vulnerable to infection. It is more likely that he is sensitive to infection induced immune activation. If zithromax is more effective, he is most likely to have activation of innate immune responses mediated by NF-kB pathway, since zithromax is a hibitior of NF-kB signaling pathways. You may just continue zithromax and d/c Omnicef. I wanted to see which way will be effective. Omnicef is an inhibitor of GABA mediated signaling and worked for certain neurodegenefative conditions (probably including Lyme disease). If Gamunex works better, this is most likely associated with the fact how the brand retain intact IgG molecule as we discussed at his last clinic visit. If this is true, Optigam will be most effective, although the infusion volume will be twice as much as Gamunex.

 

I do not think that a higher dose of IVIG will also make much difference either. You seems to have forgotten that he does not have classical PANDAS. In his case, symtoms will return in 3-4 weeks later. Even for classical PANDAS, it is not clarified that high dose of IVIG is truly curative, although Lyme doctors seem to make a lot of money by promoting such an idea.

 

Interesting about the Optigam?

 

Melanie

 

I do think shes a bit old school I do trust her and I really dont have anyone else.I havent heard back from Dr T in a while and I have left 3 messages for Dr B ,he hasnt returned my calls.

 

Its hard to know the right thing to do ,like many of you its impossible unless your a doctor or a scientist.Hes getting better,maybe shes right and Im wrong.I do know that she is treating him with the IVIG and antibiotics so thats good.Im thinking of going to see the infectious disease doctor and picking his brain

 

Melanie

[bronxmom2]

My advice is to call Dr. B's office and make an appointment, don't wait for a call-back.

[melanie]

My advice is to call Dr. B's office and make an appointment, don't wait for a call-back.

 

 

Does he do phone consult?

[faith]

melanie,

why would your immuno doc mention Lyme docs? Did she (or you) maybe mean "PANDAS" docs?......

 

melanie, if it is clear that your child is not a clear PANDAS case, than I think you need to stick with what your current doctor is telling you. until you are convinced your child is not getting better, I wouldn't start fooling around with other doctors right now. just my opinion.

 

Faith

[sf_mom]

Faith,

 

Some patients with Lyme are also treated with IVIG. I know my friend who went undiagnosed for 10 years with Lyme is being treated with IVIG/antibiotics.

 

-Wendy

 

melanie,

why would your immuno doc mention Lyme docs? Did she (or you) maybe mean "PANDAS" docs?......

 

melanie, if it is clear that your child is not a clear PANDAS case, than I think you need to stick with what your current doctor is telling you. until you are convinced your child is not getting better, I wouldn't start fooling around with other doctors right now. just my opinion.

 

Faith

[dut]

Hi - yep, he does do phone consults, we've just done one this last week....