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What Igenex tests? Will antibiotics affect results?


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Honestly, right now, not much.

 

Lots of things are better, but tics are really high. On several abx (including rifampin) and b vitamins, epsom salt baths, and oat bran tablets (instead of cholestyramine, which I am scared of because I took it when a young adult with the very bad side effect of depression for me). No one recommended the oat bran, just thought of it myself -- hope it's an okay thing!

 

 

Ifran - and I'm sure he'll thank all of you! ;)

 

What supplements are you using these days? thx

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Honestly, right now, not much.

 

Lots of things are better, but tics are really high. On several abx (including rifampin) and b vitamins, epsom salt baths, and oat bran tablets (instead of cholestyramine, which I am scared of because I took it when a young adult with the very bad side effect of depression for me). No one recommended the oat bran, just thought of it myself -- hope it's an okay thing!

 

 

Ifran - and I'm sure he'll thank all of you! ;)

 

What supplements are you using these days? thx

interesting about the oat bran - keep's the stools moving??

 

Hang in there!

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Have been waiting for pandas doc to send orders for Igenex testing for over a month. Now, it turns out, I will be filling out the form and sending to them, so doctor can check test boxes and sign, then send back.

 

DD7 was tested in November, and was "negative" on the basic lyme panel. But there were IND's on lyme specific bands, and some ='s too. Was told to leave it alone, it's negative.

 

DD is still not well. STILL ticcing all the time, with periods of horrible ticcing, still some ocd, etc. I'm not sold on lyme, but before proceeding further with anything else immune-modulating, I want to try to rule it out. We have not yet tested for co-infections, and that bothers me.

 

So can anyone tell me which tests would be best to run (assuming I haven't robbed any banks lately)? Definitely want to rule out Bartonella, etc. Is it 5090 (Complete co-infection panel) or 5095 (NEW complete co-infection panel)?

 

Also, she was on low doze zithromax for 8 months, then switched to Keflex for strep infection a little over a month ago...still on Keflex. Is it a problem to test for these while on anbibiotics?

 

Is there any point in doing the 188,189 (IgG & IgM Western Blot) again? Her Igenex CD 57 was really high. Her IFA was equivocal (?)

 

Thanks.

I notice you keep using the words "rule out" for Lyme and Bartonella and there is no test at this time that will do that. (It would be awesome if there was.) A negative test does not mean no lyme or Bartonella. Further testing might just bring up more questions than answers. If you think Lyme might be an issue than I think you would get more for your money to go to a LLMD rather than order more tests at this time. Let the LLMD look at what in your child’s history could possibly be attributed to Lyme. They would also know what tests would be the best to run. Then let your Mom instinct take over as to whether it makes sense.

 

We get a full write up from the LLMD after each of Aidan's appointments After the first appointment the write up included all of the findings in Aidan's history supporting the Lyme diagnosis - his IGenex results were just one of many things listed there.

 

Also, Aidan was neg. for Bartonella but LLMD thought he had it. Probably mostly based on behavioral symptoms. They also thought a red spot in the crease under Aidan’s eye was from Bartonella. It has been there for years but it just went away about a week ago – I think due to Bartonella treatment – weeks of it.

 

Since we believe Aidan was congenital Lyme I decided to have me, dh and siblings tested (local doctor ordered). Dh and I came back IGG and IGM positive by Igenex criteria (more positive than Aidan), other son was IGM positive (band 31 AND 41) and sister had IND on ** bands. When I told Aidan's LLMD the response (in the write up we got after visit) was:

 

"even with IGenx testing, it is necessary to review these results with clinical presentation. Western Blot screening evaluates for immunological response to various proteins or simply potential for exposure. Certainly, many patient's with Lyme do not have positive tests and the diagnosis is made on evaluating history, subjective and objective findings. Supportive serologies are often utilized to support the diagnosis as opposed to confirming the diagnosis."

 

When I read your posts on the PANDAS board I can totally relate. You seem to feel frustrated with your PANDAS doctor and I think that it is less about the doctor's abilities and more about your gut feeling about your child's fit with the doctor and treatment plan, especially since your child does not fit the PANDAS mold exactly – that there might be something more. We have “ Been there done that” even though many parts of Aidan’s history supported PANDAS diagnosis. (Also with other doctors in Aidan’s long medical history) It seems to me that you are having some gut feelings that the PANDAs-only path may not be the one for your child. There are LLMDs that are aware of PANDAS and will look at that too. Ours checks Aidan’s strep titers every month. Our LLMD was the first that I felt looked at the entire history and did not treat us with a cookie cutter approach.

 

But, another option might be be to go ahead and do the steroids once and see what happens. I know Dr. K uses the steroids as a tool to try to see if IVIG was likely to work. We tried that (before thinking about Lyme) and for us it did not show an improvement. Just another option.

 

You are a great Mom and you will figure this out for your child – whichever direction it will lead.

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I appreciate your reply, Aidan's mom...I really do. I think if I could find a local lyme doctor who is level-headed like yours, I would go. I do truly feel that MANY, MANY LYme doctors will look at symptoms, and say "It's likely Lyme" CLINICALLY, when the symptoms can be "clinical" for a number of things. I have yet to hear anyone who jumped ship say that their kid is in remission of symptoms. All will say "Lyme treatment is LONG"---so while these people feel they are on the right path, accepting years of strong antibiotic treatment, I think part of it is just that they are doing SOMETHING and feel good about that. But show me a pandas-kid-turned-Lyme who is in remission. I am sure I will enrage a few people here by saying that, and may some day even eat my words. But the bottom line is that the Lyme symptoms list has become so large, that I don't know if I totally, in my gut, buy it. I don't even know if I buy the Igenex labs results, honestly. Some of the bands are known to cross-react with other viruses/bacteria, and I think there is some merit in knowing that.

 

As for the frustration with my pandas doctor, to be completely honest, I actually DO think some of it is the ability. The ability to systematically rule out things, make a treatment plan, not contradict statements and any given appointment, follow up, follow through, respond to attempts to contact (especially when directly TOLD to contact).....I'm ready for the comments from parents about commenting on doctors in the way I am right now...BUT!!!!!I come to the boards for real-life data, and this INCLUDES good AND BAD about any and all doctors I may consider taking my daughter to. I want to hear it all. This forum is for the parents, NOT the doctors. It is OUR chance to get behind-the-scenes information. It's for OUR benefit, NOT the doctors! They can certainly start their own forum and talk about all of us crazy parents (although that might be a HIPPA violation). So I am giving my personal, real-life experience here. I know some have fit in the neat little pandas package, for whom our doctor treats aggressively, while others have gotten quite the run-around, like us. Unfortunately, we don't have savings, we don't have credit cards, we don't have 2 salaries, we don't have money to travel around the country and try different docs. We have 4 kids, one salary, and have exhausted every drop of money we have on this, and are now being hounded by collection agencies for bills as small as $54 to Labcorp. So this is all we have right now. There is NO EXCUSE for a doctor to be totally unresponsive ........fortunately, for us, it has not been "emergencies" but more of calling to see where the orders are for testing....after a week, two weeks, 5 weeks. Or e-mailing about a critical "next move" that we were started on, and not knowing what/how to do it. For a number of people, kids have been in absolute crisis, and there has been no response. And that is unacceptable. So those of you who are pi$$ed off at me for saying all of this, it's a disservice to ONLY elevate some of these doctors to GOD-status, ultimate-healer on this forum. That is NOT helpful.

 

I am going to sign off now.....I hope anyone who might be offended by what I have written will forgive me some day. I am not only speaking out of frustration, but out of real-life experience and truth, and that's what I WANT TO HEAR WHEN I COME HERE!!!

 

Have been waiting for pandas doc to send orders for Igenex testing for over a month. Now, it turns out, I will be filling out the form and sending to them, so doctor can check test boxes and sign, then send back.

 

DD7 was tested in November, and was "negative" on the basic lyme panel. But there were IND's on lyme specific bands, and some ='s too. Was told to leave it alone, it's negative.

 

DD is still not well. STILL ticcing all the time, with periods of horrible ticcing, still some ocd, etc. I'm not sold on lyme, but before proceeding further with anything else immune-modulating, I want to try to rule it out. We have not yet tested for co-infections, and that bothers me.

 

So can anyone tell me which tests would be best to run (assuming I haven't robbed any banks lately)? Definitely want to rule out Bartonella, etc. Is it 5090 (Complete co-infection panel) or 5095 (NEW complete co-infection panel)?

 

Also, she was on low doze zithromax for 8 months, then switched to Keflex for strep infection a little over a month ago...still on Keflex. Is it a problem to test for these while on anbibiotics?

 

Is there any point in doing the 188,189 (IgG & IgM Western Blot) again? Her Igenex CD 57 was really high. Her IFA was equivocal (?)

 

Thanks.

I notice you keep using the words "rule out" for Lyme and Bartonella and there is no test at this time that will do that. (It would be awesome if there was.) A negative test does not mean no lyme or Bartonella. Further testing might just bring up more questions than answers. If you think Lyme might be an issue than I think you would get more for your money to go to a LLMD rather than order more tests at this time. Let the LLMD look at what in your child’s history could possibly be attributed to Lyme. They would also know what tests would be the best to run. Then let your Mom instinct take over as to whether it makes sense.

 

We get a full write up from the LLMD after each of Aidan's appointments After the first appointment the write up included all of the findings in Aidan's history supporting the Lyme diagnosis - his IGenex results were just one of many things listed there.

 

Also, Aidan was neg. for Bartonella but LLMD thought he had it. Probably mostly based on behavioral symptoms. They also thought a red spot in the crease under Aidan’s eye was from Bartonella. It has been there for years but it just went away about a week ago – I think due to Bartonella treatment – weeks of it.

 

Since we believe Aidan was congenital Lyme I decided to have me, dh and siblings tested (local doctor ordered). Dh and I came back IGG and IGM positive by Igenex criteria (more positive than Aidan), other son was IGM positive (band 31 AND 41) and sister had IND on ** bands. When I told Aidan's LLMD the response (in the write up we got after visit) was:

 

"even with IGenx testing, it is necessary to review these results with clinical presentation. Western Blot screening evaluates for immunological response to various proteins or simply potential for exposure. Certainly, many patient's with Lyme do not have positive tests and the diagnosis is made on evaluating history, subjective and objective findings. Supportive serologies are often utilized to support the diagnosis as opposed to confirming the diagnosis."

 

When I read your posts on the PANDAS board I can totally relate. You seem to feel frustrated with your PANDAS doctor and I think that it is less about the doctor's abilities and more about your gut feeling about your child's fit with the doctor and treatment plan, especially since your child does not fit the PANDAS mold exactly – that there might be something more. We have “ Been there done that” even though many parts of Aidan’s history supported PANDAS diagnosis. (Also with other doctors in Aidan’s long medical history) It seems to me that you are having some gut feelings that the PANDAs-only path may not be the one for your child. There are LLMDs that are aware of PANDAS and will look at that too. Ours checks Aidan’s strep titers every month. Our LLMD was the first that I felt looked at the entire history and did not treat us with a cookie cutter approach.

 

But, another option might be be to go ahead and do the steroids once and see what happens. I know Dr. K uses the steroids as a tool to try to see if IVIG was likely to work. We tried that (before thinking about Lyme) and for us it did not show an improvement. Just another option.

 

You are a great Mom and you will figure this out for your child – whichever direction it will lead.

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I appreciate your reply, Aidan's mom...I really do. I think if I could find a local lyme doctor who is level-headed like yours, I would go. I do truly feel that MANY, MANY LYme doctors will look at symptoms, and say "It's likely Lyme" CLINICALLY, when the symptoms can be "clinical" for a number of things. I have yet to hear anyone who jumped ship say that their kid is in remission of symptoms. All will say "Lyme treatment is LONG"---so while these people feel they are on the right path, accepting years of strong antibiotic treatment, I think part of it is just that they are doing SOMETHING and feel good about that. But show me a pandas-kid-turned-Lyme who is in remission. I am sure I will enrage a few people here by saying that, and may some day even eat my words. But the bottom line is that the Lyme symptoms list has become so large, that I don't know if I totally, in my gut, buy it. I don't even know if I buy the Igenex labs results, honestly. Some of the bands are known to cross-react with other viruses/bacteria, and I think there is some merit in knowing that.

 

As for the frustration with my pandas doctor, to be completely honest, I actually DO think some of it is the ability. The ability to systematically rule out things, make a treatment plan, not contradict statements and any given appointment, follow up, follow through, respond to attempts to contact (especially when directly TOLD to contact).....I'm ready for the comments from parents about commenting on doctors in the way I am right now...BUT!!!!!I come to the boards for real-life data, and this INCLUDES good AND BAD about any and all doctors I may consider taking my daughter to. I want to hear it all. This forum is for the parents, NOT the doctors. It is OUR chance to get behind-the-scenes information. It's for OUR benefit, NOT the doctors! They can certainly start their own forum and talk about all of us crazy parents (although that might be a HIPPA violation). So I am giving my personal, real-life experience here. I know some have fit in the neat little pandas package, for whom our doctor treats aggressively, while others have gotten quite the run-around, like us. Unfortunately, we don't have savings, we don't have credit cards, we don't have 2 salaries, we don't have money to travel around the country and try different docs. We have 4 kids, one salary, and have exhausted every drop of money we have on this, and are now being hounded by collection agencies for bills as small as $54 to Labcorp. So this is all we have right now. There is NO EXCUSE for a doctor to be totally unresponsive ........fortunately, for us, it has not been "emergencies" but more of calling to see where the orders are for testing....after a week, two weeks, 5 weeks. Or e-mailing about a critical "next move" that we were started on, and not knowing what/how to do it. For a number of people, kids have been in absolute crisis, and there has been no response. And that is unacceptable. So those of you who are pi$$ed off at me for saying all of this, it's a disservice to ONLY elevate some of these doctors to GOD-status, ultimate-healer on this forum. That is NOT helpful.

 

I am going to sign off now.....I hope anyone who might be offended by what I have written will forgive me some day. I am not only speaking out of frustration, but out of real-life experience and truth, and that's what I WANT TO HEAR WHEN I COME HERE!!!

 

Have been waiting for pandas doc to send orders for Igenex testing for over a month. Now, it turns out, I will be filling out the form and sending to them, so doctor can check test boxes and sign, then send back.

 

DD7 was tested in November, and was "negative" on the basic lyme panel. But there were IND's on lyme specific bands, and some ='s too. Was told to leave it alone, it's negative.

 

DD is still not well. STILL ticcing all the time, with periods of horrible ticcing, still some ocd, etc. I'm not sold on lyme, but before proceeding further with anything else immune-modulating, I want to try to rule it out. We have not yet tested for co-infections, and that bothers me.

 

So can anyone tell me which tests would be best to run (assuming I haven't robbed any banks lately)? Definitely want to rule out Bartonella, etc. Is it 5090 (Complete co-infection panel) or 5095 (NEW complete co-infection panel)?

 

Also, she was on low doze zithromax for 8 months, then switched to Keflex for strep infection a little over a month ago...still on Keflex. Is it a problem to test for these while on anbibiotics?

 

Is there any point in doing the 188,189 (IgG & IgM Western Blot) again? Her Igenex CD 57 was really high. Her IFA was equivocal (?)

 

Thanks.

I notice you keep using the words "rule out" for Lyme and Bartonella and there is no test at this time that will do that. (It would be awesome if there was.) A negative test does not mean no lyme or Bartonella. Further testing might just bring up more questions than answers. If you think Lyme might be an issue than I think you would get more for your money to go to a LLMD rather than order more tests at this time. Let the LLMD look at what in your child’s history could possibly be attributed to Lyme. They would also know what tests would be the best to run. Then let your Mom instinct take over as to whether it makes sense.

 

We get a full write up from the LLMD after each of Aidan's appointments After the first appointment the write up included all of the findings in Aidan's history supporting the Lyme diagnosis - his IGenex results were just one of many things listed there.

 

Also, Aidan was neg. for Bartonella but LLMD thought he had it. Probably mostly based on behavioral symptoms. They also thought a red spot in the crease under Aidan’s eye was from Bartonella. It has been there for years but it just went away about a week ago – I think due to Bartonella treatment – weeks of it.

 

Since we believe Aidan was congenital Lyme I decided to have me, dh and siblings tested (local doctor ordered). Dh and I came back IGG and IGM positive by Igenex criteria (more positive than Aidan), other son was IGM positive (band 31 AND 41) and sister had IND on ** bands. When I told Aidan's LLMD the response (in the write up we got after visit) was:

 

"even with IGenx testing, it is necessary to review these results with clinical presentation. Western Blot screening evaluates for immunological response to various proteins or simply potential for exposure. Certainly, many patient's with Lyme do not have positive tests and the diagnosis is made on evaluating history, subjective and objective findings. Supportive serologies are often utilized to support the diagnosis as opposed to confirming the diagnosis."

 

When I read your posts on the PANDAS board I can totally relate. You seem to feel frustrated with your PANDAS doctor and I think that it is less about the doctor's abilities and more about your gut feeling about your child's fit with the doctor and treatment plan, especially since your child does not fit the PANDAS mold exactly – that there might be something more. We have “ Been there done that” even though many parts of Aidan’s history supported PANDAS diagnosis. (Also with other doctors in Aidan’s long medical history) It seems to me that you are having some gut feelings that the PANDAs-only path may not be the one for your child. There are LLMDs that are aware of PANDAS and will look at that too. Ours checks Aidan’s strep titers every month. Our LLMD was the first that I felt looked at the entire history and did not treat us with a cookie cutter approach.

 

But, another option might be be to go ahead and do the steroids once and see what happens. I know Dr. K uses the steroids as a tool to try to see if IVIG was likely to work. We tried that (before thinking about Lyme) and for us it did not show an improvement. Just another option.

 

You are a great Mom and you will figure this out for your child – whichever direction it will lead.

No offense taken by me. I can relate to all of your concerns and I think they are valid. Want to write more but no time right now.

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I don't think there's anything wrong with respectfully sharing a negative experience with a doctor, so long as that doctor's name isn't used. This is not a private forum. I frequently google a topic and get ACN responses as my first few "hits". So I don't think it's ok to name a name. But to share a generalized experience where someone can then follow up privately would be a valid post. I feel that the key is to do so in a respectful manner rather than a bashing. "My doctor does a poor job of returning calls" is different than "my doctor shows no respect or concern". Not saying you've said any of this - only sharing my personal opinion of where to draw the line.

 

I'm not upset by your personal feelings toward lyme. We all need to follow what hits home and not spend energy on things that don't seem to hold answers for us. But I've always been struck by your inherent distrust of lyme doctors yet your embrace of a Pandas diagnosis despite a lack of clinical symptoms such as strep or elevated titers or satisfactory response to treatments you've tried so far. I have no idea if your kids have Pandas, lyme or something entirely different. It only strikes me that you apply a far higher standard to lyme than you seem to for Pandas or Tourettes. I struggle to understand why.

 

I don't have any answers for you. I think in general, the members on the lyme forum have come here from the Pandas forum because Pandas answers didn't work for us. For the most part, we have lyme labs that suggest lyme might be part of the problem. Not everyone uses long term abx. There are many approaches in the lyme world. Some of us have found that other factors may also be at play, such as mold, zinc deficiencies, detox problems, viruses, metals...it's hardly a one-size, one label fits all forum. Will you find anyone on here who has complete remission? Probably not. Do you find those people on the Pandas forum? The people I know who've been lucky enough to get their kids stable don't post on forums anymore. I'm not going to try to convince you of any diagnosis or treatment. I don't get a finders fee for recruiting someone to "the cause". I can only offer my own experiences to anyone who finds them helpful. My kids didn't get well using Pandas protocols - and we tried them all. They are better with what we're doing now. Their behaviors show it, their lab work shows it, their school performance shows it. Are we done? Hardly. Do I know we're on "the" right path? I think we're heading in the right direction. But realize we may need to alter course here and there.

 

As Aiden's mom said, there's no lab "rule out". You learn as much as you can and you try what makes the most sense. No one can give you any guarantees or single path to good health. I do hope you find something that brings you relief. No mom should have to go through the wringer you're going through.

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My inherent distrust of Lyme doctors comes from seeing MANY people, even local people....good friends...go through SERIOUS, MAJOR, RISKY treatment protocols for Lyme, all the while NEVER having one single spot of a positive on ANY test of ANY sort. AND to boot, they are NOT getting better. They will say they feel worse, and blame it on a "herx" but if you look up the definition of a herx....they do not fit the criteria of a "herx." I think some "herx's" are actually the crappy way you feel from the drug cocktails you are on.

 

There was a letter written by an ILADS doctor...I will post it if I can find it, but it pretty much sums up what my fears/thoughts are. I think if I walk in a LLMD's office, we WILL be treated with a Lyme protocol. I want more than that. I want a clear-minded doctor who can see things through clear lenses. The list of Lyme symptoms is so long and all-inclusive, and that there's no way you can leave there without fitting a lyme clinical diagnosis. I can make every symptom I've ever had fit me in the lyme clinical diagnosis, but I don't believe for a minute I have Lyme. I have Raynaud's since childhood. Runs in the family. I have rosacea. Runs in the family, etc....but if I went in with those symptoms, plus some others similar, I would be told i have lyme.

 

So I don't believe that just an LLMD is going to clearly look at this. YOu have gotten very lucky to find one who seems to do so more than many others I've heard of.

 

I know I sound angry and probably even attacking here, I am just trying to explain why I am having such a hard time trusting doctors.

 

Just another tidbit about me, and possibly why I am a bit skeptical of doctors......I had a small lump in my neck. For two years, every time I saw a doctor, I asked about it, they looked, told me it was everything from a swollen lymph node to an acne cyst. When I was pregnant with my first child, the lump got HUGE. Like a golf ball poking out the side of my neck. I went to an ENT and he said "Well, this needs to come out as soon as the doctor gives you the all-clear after the baby is born. 99% likely it's benign." Next day, water breaks 6 weeks early, deliver preemie. 3 weeks later, needle biopsy. Cancer. Surgery on dd's due date. Had a good portion of the right side of my neck removed (radical parotidectomy). Luckily, they saved my facial nerve, around which the cancer grew. So, maybe that gives some background on why I am so skeptic of just doing anything a doctor says, or ignores.

 

I don't think there's anything wrong with respectfully sharing a negative experience with a doctor, so long as that doctor's name isn't used. This is not a private forum. I frequently google a topic and get ACN responses as my first few "hits". So I don't think it's ok to name a name. But to share a generalized experience where someone can then follow up privately would be a valid post. I feel that the key is to do so in a respectful manner rather than a bashing. "My doctor does a poor job of returning calls" is different than "my doctor shows no respect or concern". Not saying you've said any of this - only sharing my personal opinion of where to draw the line.

 

I'm not upset by your personal feelings toward lyme. We all need to follow what hits home and not spend energy on things that don't seem to hold answers for us. But I've always been struck by your inherent distrust of lyme doctors yet your embrace of a Pandas diagnosis despite a lack of clinical symptoms such as strep or elevated titers or satisfactory response to treatments you've tried so far. I have no idea if your kids have Pandas, lyme or something entirely different. It only strikes me that you apply a far higher standard to lyme than you seem to for Pandas or Tourettes. I struggle to understand why.

 

I don't have any answers for you. I think in general, the members on the lyme forum have come here from the Pandas forum because Pandas answers didn't work for us. For the most part, we have lyme labs that suggest lyme might be part of the problem. Not everyone uses long term abx. There are many approaches in the lyme world. Some of us have found that other factors may also be at play, such as mold, zinc deficiencies, detox problems, viruses, metals...it's hardly a one-size, one label fits all forum. Will you find anyone on here who has complete remission? Probably not. Do you find those people on the Pandas forum? The people I know who've been lucky enough to get their kids stable don't post on forums anymore. I'm not going to try to convince you of any diagnosis or treatment. I don't get a finders fee for recruiting someone to "the cause". I can only offer my own experiences to anyone who finds them helpful. My kids didn't get well using Pandas protocols - and we tried them all. They are better with what we're doing now. Their behaviors show it, their lab work shows it, their school performance shows it. Are we done? Hardly. Do I know we're on "the" right path? I think we're heading in the right direction. But realize we may need to alter course here and there.

 

As Aiden's mom said, there's no lab "rule out". You learn as much as you can and you try what makes the most sense. No one can give you any guarantees or single path to good health. I do hope you find something that brings you relief. No mom should have to go through the wringer you're going through.

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I share your skepticism of doctors. Seen too much, learned too much. It's ironic you suggest I've found an open-minded LLMD, because I think I have, but my DH has been feeling badly for several months and got the brush off from our PCP. So he agreed to see someone with a more integrative approach, but didn't want to see my kids' LLMD because he "didn't want to automatically get diagnosed with lyme".

 

Now, the LLMD has complained to me about how some patients come to him begging to be dx'd when he doesn't feel they have lyme. So I had to chuckle. I suspect DH is reacting because I've half-kiddingly told him his fatigue must be lyme (and we pulled a deer tick off him last summer before we were lyme literate and we didn't fight for a month of doxy). So he's going to a different integrative MD who will test using Igenex but will also look at other factors and causes. This doctor is not an LLMD and if Igenex comes back suggestive, I will push for DH to them see my kids' LLMD. So I understand your concern. But I think the key for any next step is to find a doctor you can have confidence in, regardless of their specialty. A rheumatologist has one pair of glasses, an infectious disease doctor has another. To some degree, you self-select any diagnosis based on your specialist.

 

Here's an excerpt from an interview you might want to read. This woman has a practice in the DC area and is highly regarded in lyme circles.

"Lyme disease symptoms are vast and varied. How do you diagnose Lyme, when all the symptoms can manifest so differently from patient to patient?

 

Right. Well, I always tell my patients that the diagnosis is like putting together the pieces of a puzzle. There are a number of different things that all have to fit together, there isn't just one thing that can happen and make you diagnose the disease. It has to be a combination of factors. If the history is right, in other words there was some potential for exposure, and the lab tests, of course, play some part in this, although they are so often inaccurate. And, if the symptoms fit, the typical symptoms. And, there are a few things on exam that I notice, but these are not diagnostic of Lyme, they just add to the case for Lyme.

 

Then, the two immune markers are also very important that we're using right now, in helping to decide whether it's a true Lyme case. Both the CD-57 natural killer cell count, and the C4A complement protein count are measured. And a high C4A and a low CD-57 make us even more suspicious of a Lyme case.

 

Each symptom of Lyme disease taken alone is something that probably everybody's had to some degree or another, at some time in their life. It's the severity of the symptoms, and also the quantity of the symptoms that makes one get suspicious. Everybody has had fatigue, everybody's had headaches, everyone's probably had some pains here and there in their life. But when these symptoms become overwhelming and the person becomes incapacitated, then that's something you need to really look into.

 

That must vary according to the individual. Do you see patients who think they have Lyme, but do not?

 

I actually have had a few cases where I really did not think they had Tick Borne Disease. But, I have to say that usually, by the time they come to me, they're pretty well-screened. They've already been through every other avenue, they've had many other conditions screened out. And also they come to me because there's also a great, high degree of suspicion. So yes, most of the patients I see do have Tick Borne Disease.

 

I have though on occasion seen people, and primarily when I was doing a combination of primary care and Lyme disease, I would see people who thought they had it, and I really did not think they had it. But I have to say most of the patients that come to me do have Tick Borne Disease, because there's a self-selection process going on there. "

 

You can read the full interview here http://www.lyme-disease-research-database.com/ginger-savely-transcript.html

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I probably shouldn't post anymore on this, but we are *new* to Lyme, and I just wanted to add: Our LLMD is very cautious- I had my Igenex came back high positive bartonella, we are treating that, but for the Lyme, even though I had many positive Lyme only bands, all the symptoms, I had to go get 8 vials of additonal blood draws, 2 urine tests, one of the blood draws was for the PCR blood test for Lyme.

My point? He is looking at every single piece with actual blood/urine testing, and even some Zyto testing.

For my daughter, when we walked in, I also expected he was automatically going to put her on combo antibiotics.

Not so. Based on all the other testing on her I brought in, plus testing he asked us to do, too, we are treating virus, parasites, MTHR. defective gene pathway first.

 

As far as invasive Lyme treatments, well, I happen to think IVIG with other folks blood, PEX 2 day hospital stay with a picc line (or however it works), and steriods when not certain all infections are clear, are way more scary and invasive to me, rather than trying a few antibiotics (and she is on antibiotics, anyway, for 'pandas') is much less risky, IMO. Plus, we are treating with herbs tinctures, many naturals.

 

My .02 cents.

 

I am sorry you are going through this. And I am sorry about the money involved. We, too, have spent soooo much money already getting to this point, I will be forced to go back to work at some point when my daughter and I are well.

Sending PV's-----

Edited by S & S
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Interesting LLM---I just read that exact excerpt the other day! I believe it was a doctor....Ginger Savely ---maybe she's actually NOT a doctor, that Dr. Jones recommends?? Interesting. Got any feedback on her?

 

I think you are right in that you pick your diagnosis based on the specialist you select....I know this, and think this is why I am so skiddish about making a decision.

 

 

 

I share your skepticism of doctors. Seen too much, learned too much. It's ironic you suggest I've found an open-minded LLMD, because I think I have, but my DH has been feeling badly for several months and got the brush off from our PCP. So he agreed to see someone with a more integrative approach, but didn't want to see my kids' LLMD because he "didn't want to automatically get diagnosed with lyme".

 

Now, the LLMD has complained to me about how some patients come to him begging to be dx'd when he doesn't feel they have lyme. So I had to chuckle. I suspect DH is reacting because I've half-kiddingly told him his fatigue must be lyme (and we pulled a deer tick off him last summer before we were lyme literate and we didn't fight for a month of doxy). So he's going to a different integrative MD who will test using Igenex but will also look at other factors and causes. This doctor is not an LLMD and if Igenex comes back suggestive, I will push for DH to them see my kids' LLMD. So I understand your concern. But I think the key for any next step is to find a doctor you can have confidence in, regardless of their specialty. A rheumatologist has one pair of glasses, an infectious disease doctor has another. To some degree, you self-select any diagnosis based on your specialist.

 

Here's an excerpt from an interview you might want to read. This woman has a practice in the DC area and is highly regarded in lyme circles.

"Lyme disease symptoms are vast and varied. How do you diagnose Lyme, when all the symptoms can manifest so differently from patient to patient?

 

Right. Well, I always tell my patients that the diagnosis is like putting together the pieces of a puzzle. There are a number of different things that all have to fit together, there isn't just one thing that can happen and make you diagnose the disease. It has to be a combination of factors. If the history is right, in other words there was some potential for exposure, and the lab tests, of course, play some part in this, although they are so often inaccurate. And, if the symptoms fit, the typical symptoms. And, there are a few things on exam that I notice, but these are not diagnostic of Lyme, they just add to the case for Lyme.

 

Then, the two immune markers are also very important that we're using right now, in helping to decide whether it's a true Lyme case. Both the CD-57 natural killer cell count, and the C4A complement protein count are measured. And a high C4A and a low CD-57 make us even more suspicious of a Lyme case.

 

Each symptom of Lyme disease taken alone is something that probably everybody's had to some degree or another, at some time in their life. It's the severity of the symptoms, and also the quantity of the symptoms that makes one get suspicious. Everybody has had fatigue, everybody's had headaches, everyone's probably had some pains here and there in their life. But when these symptoms become overwhelming and the person becomes incapacitated, then that's something you need to really look into.

 

That must vary according to the individual. Do you see patients who think they have Lyme, but do not?

 

I actually have had a few cases where I really did not think they had Tick Borne Disease. But, I have to say that usually, by the time they come to me, they're pretty well-screened. They've already been through every other avenue, they've had many other conditions screened out. And also they come to me because there's also a great, high degree of suspicion. So yes, most of the patients I see do have Tick Borne Disease.

 

I have though on occasion seen people, and primarily when I was doing a combination of primary care and Lyme disease, I would see people who thought they had it, and I really did not think they had it. But I have to say most of the patients that come to me do have Tick Borne Disease, because there's a self-selection process going on there. "

 

You can read the full interview here http://www.lyme-disease-research-database.com/ginger-savely-transcript.html

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eljomom- I just want to add that last summer when we ran our initial Igenex test - it wasn't suggested by any of the 3 PANDAS specialist we saw. I decided to ask our ped to run the Igenex test after reading up on lyme. Also, we didn't get the exact results we expected from our daughter's first two IVIG's. It was positive, so we then made the decision to see an LLMD, who added on one additional antibiotic for the positive lyme result and ran a slew of blood tests (most covered by insurance). It wasn't until the testing came back with additional tick borne co infections that my daughter was placed on another antibiotic to effectively treat them.

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Eljomom,

 

I just want to say that I TOTALLY hear you on what you are saying, and share all of your concerns. After reviewing all of the information available to us, we still felt this (ie lyme treatment) was the best path for us. That does not mean we are stuck on this path forever. We will continue to evaluate information as it becomes available, and we still have those same concerns. Right now I know that whenever we have tried to stop antibiotics my son becomes agitated and violent. So stopping is not an option for us or he will end up in an institution.

 

2 years ago I was completely convinced my child had juvenile bipolar disorder and fought hard to get that diagnosis so we could get help. Then I was 100% sure he had P.A.N.D.A.S., until initial treatments completely backfired. DS has ASOs in the 500s, and CamK 176, and anti-dopamine 1 four times higher than normal. Certainly enough to support a PANDAS diagnosis. But high dose antibiotics brought out more and more lyme symptoms (swollen joints, rashes, stinging sensations, ringing ears, rage). When I started talking lyme to our PANDAS specialist (who is the same one you`re talking about) I got the silent treatment. I hate to say anything negative about any doctor in this arena who is willing to put his or her neck out and help us desperate parents, but my experience sounds like yours. First contact - I was amazed. He really went above and beyond for us. Second contact - had to call repeatedly to get a response. Third contact - in total crisis, DS was raging day and night on the abx he prescribed, and his elbow swelled up like a balloon and turned purple. I had to literally harrass him to finally get a reply. I bombarded him with daily phone calls, emails and even faxed. I cried, literally broke down and cried, on the phone with his secretary. Then I asked about lyme and have not heard ANYTHING back since. Tried many more times to contact and NOTHING! I wish he would have just told me he wasn`t comfortable with lyme disease and I should find someone else. I was left feeling abandoned and betrayed by the only doc who had helped us so far.

 

But doctors aside, something in your gut has you here asking questions about lyme and it is up to you to pursue it or be okay with walking away from it. No one else can make that decision for you. Any decision, right or wrong, doesn`t have to be permanent. You can change course if you know you`re on the wrong one. We have so many times already. There`s no easy answer.

 

My heart truly goes out to you on the financial situation. We are also on 1 small income. I babysit, and raise chickens and lambs to try to fill in the gaps, but it is never enough. Working outside of the home is not an option with a mentally ill child. We drive a beat-up old van that is going to die any day. We drive 12 hours one way to see our LLMD and spend money we don`t have on appointments, meds, sups. It isn`t fair. None of this is. When I read your posts I feel your pain, anger and disappointment, and I wish there was something I could say to help. Please know you are not alone. I`m sending a cyber-hug and prayers to you and your family! (((((((((((((((((((((((hugs))))))))))))))))))))))

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