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Lyme-like illness


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I consider myself an intellegent person. Never went to med school, no biology degree, but always felt I could hold my own in a conversation. However, since my son has PANDAS, sometimes I feel I can't hold an intellegent conversation with a 3 year old!!! So often all of the medical stuff just needs to be broken down for me.

So I am very interested in the Lyme Disease concept. My son's first major episode was 2 weeks following a hunting trip. We have had him tested, and although I have not seen the results for myself, my pediatrician describes it as this: the test has maybe 10 sections to it. You have to have perhaps 5 positive to have it considered it a positive result. My son has 3 sections positive.

So to me there must be something there. The doctor disagrees and insists that it is a negative test.

All of the information you all have posted here is well over my head. Aside from the fact my brain is fried since we've been in a major PANDAS episode since September (including violence, school problems, social problems and more) So I'm a little tired.

Can you tell me specifically what I should be looking for when I request his test results?

Also can you tell me if any of these things are related to Lyme: migraines, lack of social skills, anger management issues and basic ODD symptoms.

 

Yes, yes, yes!! Those are lyme symptoms. There is this crazy controversy over lyme that is keeping people sick. As doctors argue over how many bands you need to have, lyme patients get sicker and sicker. If your son has even one lyme-specific band and those symptoms he almost definitely has lyme and needs to be treated asap. The key is getting treatment as early as possible. You need to see an ilads trained lyme specialist. Go to ilads.org and email them for the name of a doctor and ask your doctor to get your son on antibiotics in the meantime.

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Interesting stuff... again, in my girlfriend the bite is very obvious and they still missed diagnoses for 10 years. I think she was tested for Lyme originally but it was a false negative. Finally, sent to the right lab and got proper diagnoses.

Happens all the time. Doctors do not want to diagnose lyme because medical boards give lyme specialists a hard time. Its really scary. I have a relative who was hosptialized with depression for ten days and they never paid attention to her knuckle pain, nightsweats, leg cramps, sensitivity to light, sensitivity to sound, brain fog, etc. Nope they just treated the symptom with psychotropic meds and guess what? She got worse and worse. I told her to ask her doctor to run a Western blot and her doctor refused b/c her screening test for lyme was negative. Told her that her problems were "emotional." She told me she felt like she was 110 years old. Finally we brought her to our doctor and had her tested and she has a serious case of lyme. Now she has an even longer road to recovery because of the ignorance of her doctors. She lives in the NE where lyme rates are through the roof.

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Ok.... So if I find out I do have lyme... if I do I would know that it was at least from over 15 years ago as that is when my joint issues started... I am understanding that if I get treatment it will help me from getting sicker but will it do anything about the past issues?

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Ok.... So if I find out I do have lyme... if I do I would know that it was at least from over 15 years ago as that is when my joint issues started... I am understanding that if I get treatment it will help me from getting sicker but will it do anything about the past issues?

Yes it should but you need to go to an ilads-trained doctor who will know the latest tricks to killing lyme and co-infections. In general infectious disease doctors are not up on lyme and in fact many of them do not even believe in chronic lyme disease. It could take you a long time to get well but your symptoms should go away unless some permanent damage has been done. All my joint pain went away but I was on antibiotics for over a year. Never felt better. Lyme specialists treat until the symptoms go away for over two months.

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I consider myself an intellegent person. Never went to med school, no biology degree, but always felt I could hold my own in a conversation. However, since my son has PANDAS, sometimes I feel I can't hold an intellegent conversation with a 3 year old!!! So often all of the medical stuff just needs to be broken down for me.

So I am very interested in the Lyme Disease concept. My son's first major episode was 2 weeks following a hunting trip. We have had him tested, and although I have not seen the results for myself, my pediatrician describes it as this: the test has maybe 10 sections to it. You have to have perhaps 5 positive to have it considered it a positive result. My son has 3 sections positive.

So to me there must be something there. The doctor disagrees and insists that it is a negative test.

All of the information you all have posted here is well over my head. Aside from the fact my brain is fried since we've been in a major PANDAS episode since September (including violence, school problems, social problems and more) So I'm a little tired.

Can you tell me specifically what I should be looking for when I request his test results?

Also can you tell me if any of these things are related to Lyme: migraines, lack of social skills, anger management issues and basic ODD symptoms.

 

BubbasMom,

As was mentioned, a lyme doc would absolutely have begun treatment based on what you've described. The short answer to the issue of a positive test is that the CDC says that for reporting purposes, there must be 5 bands positive. However, this is only for reporting purposes. They also advise that lyme is a clinical diagnosis, and treatment should given accordingly.

 

Anyway, the bright spot for you is that you are very near one of the best lyme docs in the country -- Dr. Charles Christ who Dr. T mentioned in his opening post. He is in Columbia, MO -- here is the link to his web site:

http://www.drcharlescrist.com/

 

Call ASAP to make an appointment, and explain your situation.

 

Keep us posted... good luck.

Mary

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It's all very interesting. I actually had Lyme 15 years ago and the only way I knew I had it was because my dr noticed the bulls eye rash at my routine annual check up. Very bizaar.

 

I did ask my son's dr to order bloodwork for lyme and he agreed. We live in New England so it makes sense to do but I'm wondering with all this talk about different labs if we are going to get any good results. We will be doing the following panel: West blot (CDC Criteria), IgG, IgM and C6LPE. Would this be a good "first step" for Lyme testing? B

 

For those of you who live in endemic areas, this should absolutely be your first consideration! New England is thick, thick, thick with infected ticks. The whole upper/mid east coast is endemic. The upper Midwest. Northern California is very endemic, along with the pacific northwest. But it is found in every state. Go to the lyme boards… see how many people there are posting from Iowa, Florida, Texas… Google your state’s name plus lyme and see what comes up. This is the most common insect-transmitted disease with nearly 200,000 new cases each year – so it’s not exactly an impossibility. I’ll say it again: LAB TESTS ARE NOT ABLE TO RELIABLY DIAGNOSE.

 

 

For those who are curious, maybe you could get your doc to order up tests to be sent to one of the better labs, like Igenex, that test for all the lyme bands with much better accuracy. Maybe Dr. T will write you’re a script to have these tests run?

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It's all very interesting. I actually had Lyme 15 years ago and the only way I knew I had it was because my dr noticed the bulls eye rash at my routine annual check up. Very bizaar.

 

I did ask my son's dr to order bloodwork for lyme and he agreed. We live in New England so it makes sense to do but I'm wondering with all this talk about different labs if we are going to get any good results. We will be doing the following panel: West blot (CDC Criteria), IgG, IgM and C6LPE. Would this be a good "first step" for Lyme testing? B

 

For those of you who live in endemic areas, this should absolutely be your first consideration! New England is thick, thick, thick with infected ticks. The whole upper/mid east coast is endemic. The upper Midwest. Northern California is very endemic, along with the pacific northwest. But it is found in every state. Go to the lyme boards… see how many people there are posting from Iowa, Florida, Texas… Google your state’s name plus lyme and see what comes up. This is the most common insect-transmitted disease with nearly 200,000 new cases each year – so it’s not exactly an impossibility. I’ll say it again: LAB TESTS ARE NOT ABLE TO RELIABLY DIAGNOSE.

 

 

For those who are curious, maybe you could get your doc to order up tests to be sent to one of the better labs, like Igenex, that test for all the lyme bands with much better accuracy. Maybe Dr. T will write you’re a script to have these tests run?

 

I don't know what the c6lpe is but the best of the worst tests for lyme is the Labcorp Western blot but it is not reliable. Given your situation I would wonder if you ever got rid of lyme and whether your child could have been born with it having gotten it invitro. You should get the Igenex test for your child and get the CD57 test for yourself. The cd57 test will tell you how high your cd57 killer cells are and a score under 100 indicates an active lyme infection. The CDC criteria is designed for reporting cases of lyme and it is very stringent. Even the CDC says that lyme is a clinical diagnosis yet doctors foolishly rely on these antibody tests as patients get sicker. Many believe that the actual number of persons sick with lyme in this country is ten times the CDC number so that tells you something about their criteria. Do you have any symptoms that could be lyme?

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Would the lyme's tests still be accurate after a child being on daily Zithromax for over a year? Any info on that would be greatly appreciated!

 

We live in Virginia on a farm and I pull ticks off my children almost on a daily basis from around May to October. I have even found them imbedded in 3 of my 4 children when they were less than a year old. My neighbor who keeps his horses on our farm was diagnosed with Lyme's 2 years ago, so I know it is here.

 

TIA for any info!

 

Colleen

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Would the lyme's tests still be accurate after a child being on daily Zithromax for over a year? Any info on that would be greatly appreciated!

 

We live in Virginia on a farm and I pull ticks off my children almost on a daily basis from around May to October. I have even found them imbedded in 3 of my 4 children when they were less than a year old. My neighbor who keeps his horses on our farm was diagnosed with Lyme's 2 years ago, so I know it is here.

 

TIA for any info!

 

Colleen

 

Yikes... you definitely have a tick problem! Your kids are surely a candidate for lyme.

 

As to test results, it would be difficult to say how it would turn out at this point. The most important thing is to get to a lyme doctor who can help you sort through it all. Lymemom has a doctor in the DC area she can refer you to. Why don't you PM her and she can tell you more.

 

Good luck.

Mary

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I just posted this to Dr. T in another thread... but thought I'd post it here too.

 

For those of you within commuting distance to NYC, Columbia University has a Lyme and Tick Borne Diseases Research Center.

http://www.columbia-lyme.org/index.html

 

They have current research projects open, and if you qualify you can be eligible for free testing and treatment. Please check out this link:

http://www.columbia-lyme.org/research/cr_research.html

 

For information on how to inquire:

http://www.columbia-lyme.org/patients/part...e_research.html

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Wow, I didn't know you could transfer Lyme to an unborn child. That definitely gives me something to think about. Yes, I probably have many of the symptoms listed. I never thought about it still being Lyme. Is the cd57 a IGeneX test also? To order the IGeneX Lyme test, do I just download a form off of their website and have our dr do the draw? Do you know how long the test takes and whether 6 weeks on an antibiotic will affect the results? Also, how do I find a Lyme dr?

 

Thank you.

 

I don't know what the c6lpe is but the best of the worst tests for lyme is the Labcorp Western blot but it is not reliable. Given your situation I would wonder if you ever got rid of lyme and whether your child could have been born with it having gotten it invitro. You should get the Igenex test for your child and get the test for yourself. The cd57 test will tell you how high your cd57 killer cells are and a score under 100 indicates an active lyme infection. The CDC criteria is designed for reporting cases of lyme and it is very stringent. Even the CDC says that lyme is a clinical diagnosis yet doctors foolishly rely on these antibody tests as patients get sicker. Many believe that the actual number of persons sick with lyme in this country is ten times the CDC number so that tells you something about their criteria. Do you have any symptoms that could be lyme?

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Dr. T.

I find this all very interesting. My son has recently been dx with PANDAS by his pediatrician and Dr. K. this is his first episode caught within the first 30 days so I am hopeful early detection has helped our prognosis. He is 95 % better on day 14 of Antibiotics. That said We went to the" on call" pediatrician as my older non pandas son now has strep. I preceded to tell him about my middle son with PANDAS and he told me he does not believe in PANDAS , as strep has been around "forever" and we never saw this before. I just started to cry and tell him I know this is real !! why is my son better on antibiotics. He told me to read the book every patient tells a story.( I guess it talks about controversial disease he stated ) This Doctor also said he doesn't believe in late stage lyme. OMG I think to myself, are you kidding me. I tell him my mother and sister both have late stage lyme. My niece either has lyme related behavior issues or PANDAS she is in the middle of trying to get diagnosed. He states" something's wrong with your family" Ok tell me what it is besides "bad genes" He says I don't know but you need to bring your son to an infectious disease doctor in the bay area. With this statement of "something's wrong with your family." I started to think about the genetic component involved. Why do so many people get over lyme fine and others do not. My sister had a months of doxy when first bit but is still so sick, she has been sick 3 years now. My mom has been sick with lyme for years 15 + or so. Why does simple strep affect our pandas kids so badly. I know they say there is a genetic predisposition for PANDAS, what about for chronic lyme ( could that bacteria be causing an autoimmune response in some people? i.e. my family!! Is there any genetic testing studies out there that my family could do? I don't believe it is just coincidence that 4 members of my immediate family have either chronic lyme or PANDAS!!! There has to be a connection. Just wish I knew :( Lisa

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Oh my gosh.

 

He doesn't believe in PANDAS, he doesn't believe in late stage Lyme's, but what he does believe is that "something is wrong with your family"....Find out when he is on call and try to avoid those days!!

 

You mentioned that your son that does not have PANDAS recently had strep. Did you see any changes whatsoever in him when he had strep?

 

Does anyone have any thoughts on why some families have all their children affected by PANDAS and others only have one or two out of their children with PANDAS??

 

I really believe there has to be a genetic component b/c I was a PANDAS child/adolescent, all 4 of my children have PANDAS, and at least two of my sister's children have it. Does anyone think that there is a genetic component in some families, but not in others?

 

I am SO waiting for any genetic study to subject my entire family to. Dr. Swedo told me last year she wanted to try to do something with genetics, but nothing so far. We are willing to be guinea pigs if it will help figure out this dreaded disorder for our precious children.

 

TIA for any thoughts!

 

Colleen

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Dr. T.

I find this all very interesting. My son has recently been dx with PANDAS by his pediatrician and Dr. K. this is his first episode caught within the first 30 days so I am hopeful early detection has helped our prognosis. He is 95 % better on day 14 of Antibiotics. That said We went to the" on call" pediatrician as my older non pandas son now has strep. I preceded to tell him about my middle son with PANDAS and he told me he does not believe in PANDAS , as strep has been around "forever" and we never saw this before. I just started to cry and tell him I know this is real !! why is my son better on antibiotics. He told me to read the book every patient tells a story.( I guess it talks about controversial disease he stated ) This Doctor also said he doesn't believe in late stage lyme. OMG I think to myself, are you kidding me. I tell him my mother and sister both have late stage lyme. My niece either has lyme related behavior issues or PANDAS she is in the middle of trying to get diagnosed. He states" something's wrong with your family" Ok tell me what it is besides "bad genes" He says I don't know but you need to bring your son to an infectious disease doctor in the bay area. With this statement of "something's wrong with your family." I started to think about the genetic component involved. Why do so many people get over lyme fine and others do not. My sister had a months of doxy when first bit but is still so sick, she has been sick 3 years now. My mom has been sick with lyme for years 15 + or so. Why does simple strep affect our pandas kids so badly. I know they say there is a genetic predisposition for PANDAS, what about for chronic lyme ( could that bacteria be causing an autoimmune response in some people? i.e. my family!! Is there any genetic testing studies out there that my family could do? I don't believe it is just coincidence that 4 members of my immediate family have either chronic lyme or PANDAS!!! There has to be a connection. Just wish I knew :( Lisa

 

When I was a medical student at Johns Hopkins, I had the distinct pleasure and privilege of having this man as my attending in medicine for a month. This was in 1984 or 1985, and it was the last time he formally taught medical students.

 

http://en.wikipedia.org/wiki/Victor_A._McKusick

 

He was a God among mortals, but carried himself like a humble priest. I remember him telling us "we are all eternal students".

 

It's hard to believe that this fellow you encountered who "doesn't believe in this" and "doesn't believe in that" has the nerve to put the same two initials after his name as Dr. McKusick.

 

Sadly , we all get to put MD after out names ... so many patients still are awed by the mystique of those letters. There are doctors and then there are DOCTORS. Ye shall not know them by their white coats. Ye shall know them by their fruits.

 

Sorry for the rant, this stuff peeves me off.

 

Dr. T

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I hope every parent who has ever come in contact with a physician who doesn't "believe" in Pandas, says it is "controversial", or even worse, that you are "crazy" reads Dr T's post above this one (I still can't figure out how to put someone else's posts in quotes- sorry)

 

You renew my faith in medicine and the realization that although we feel alone sometimes, we really are not alone. We have a lot of good guys on our side and we will figure this all out. That I am confident of, just hope it is sooner than later!

 

Thank you.

Colleen

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