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Lyme Chime


JAG10

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Is it possible for those who are sharing their background knowledge about lyme disease presentation to be more discerning perhaps by utilizing a rating scale system? Something like:

 

5-Very Likely

4-Likely

3-Just as Likely as Unlikely

2-Unlikely, but possible

1-Very Unlikely, but possible

0-No association whatsoever

 

Can we try this? Let's look at some symptoms or markers and see if this moves the discussion forward. Right now, it feels like those that are sharing their Lyme knowledge are lumping together 1-5, and if it is not a 0, then we hear "lyme chime."

 

If I were going to do this for PANDAS for example, I might say:

 

Separation Anxiety-5

Elevated CAM K-5

Handwriting deterioration-4

Significant history of positive strep rapids/cultures-4

Eating Disorder-3

ASO/DNAseB titer rise-3

Insomnia-2

Trichotillomania-2

Livedo Reticulitis-1

Suicide attempts-1

Tumors-0

Dwarfism-0

 

Please don't cyber-shoot me! It just seems like, perhaps, a frame of reference and perspective might help the conversation. BTW, my dd10 was one of like 2 or 3 kids I've heard of on this board that had livedo reticulitis and it went away with IVIG, so I would say based on what I've read posted that LR is very unlikely, but possible and related to autoimmune dysfunction.

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Pardon my brain fog if you are being clear and I'm just not getting it, but I don't quite understand. When you give separation anxiety a 5, you mean its "very likely" a symptom of Lyme in children?

 

I watched Dr. Corson's talk at the ILAD's conference today and from what she said, I think she would give the following ratings for likelihood that they CAN be caused by Lyme/coinfections:

 

Separation Anxiety-5

Elevated CAM K- didn't discuss

Handwriting deterioration-5

Significant history of positive strep rapids/cultures-4

Eating Disorder-5

ASO/DNAseB titer rise- didn't discuss

Insomnia-5

Trichotillomania-didn't discuss, but OCD would get a 5

Livedo Reticulitis-5

Suicide attempts-5

Tumors-didn't discuss

Dwarfism-didn't discuss

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I'm in a little bit of a hurry and not sure if you are interested in the Lyme perspective.

 

This is what I know about our situation.

 

Both our twins suffer from Livedo Reticularis (entire body inclusive of cheeks)... which is indicative of Lupus. As you may have heard from conference today Lyme often mimics Lupus. In our case its Congenital Lyme (confirmed via DNA testing) and the LR starting to fade from their cheeks with antibiotic treatment. We anticipate resolution without IVIG.

 

-Wendy

Edited by SF Mom
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Let me try again. I just picked some random symptoms and markers for PANDAS and rated them according to the scale based on commonality in children with PANDAS, not lyme. My hope was to get this type of reference done by those knowledgeable about Lyme to apply the same type of ratings.

 

So, examples of a 5 would mean over 90% of the children diagnosed with PANDAS exhibit separation anxiety. Are you say that high a percentage of children diagnosed with Lyme exhibit all those symptoms?

 

What I'm getting at is that perhaps the questions should not be interpreted as "Can this EVER be a symptom of Lyme?" because we all have gathered the answer will always be YES. Perhaps the question should be posed in terms of likelihood of commonality symptom clusters.

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I really like your line of thinking.

 

I know some of the PANDAS studies list the many symptoms and what percentage of kids in the study had them...so I wonder if some of the knowledgeable Lyme parents could post links to Lyme studies that have similar listings...perhaps that can give more insight into what you are asking.

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Dr. Ann Corson had a fabulous speech today at the ILADS conference in New Jersey. She said that children with lyme will sometimes only have neuro/psychological symptoms. Dr. Corson said that movement disorders, handwriting, vocal and motor TICS, OCD, sleep issues, depression, suicidal thoughts, etc.... are all symptoms of neuro/psychological lyme.

 

Both of my children have strep, mycoplasma and lyme issues and they have such different symptoms. My daughter only had TICs when she had strep and my son had tics off and on with all the microbes. They both had separation anxiety with all microbes.

 

I am not sure if we can always differentiate between which microbes cause which symptoms. I keep trying to find correlations myself .....

 

Elizabeth

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I just read the link posted by pixiesmommy on the Lyme board:

 

http://www.lymememorial.org/Transmission.htm

 

Many of the infections (including myco-p) listed are reported to be transmitted not only by ticks, but by mosquitoes, fleas, mites, ect. Well, if that's the case how many typical children, if tested to the extent many here are having their children tested, would come up positive for Lyme or the laundry list of co-infections??? Isn't it safe to say our kids get more mosquito bites than tick bites? OMG, what about the whole bedbug phenomena?!?!

 

Then this brings us back to the chicken/egg debate...do all children (and adults) have evidence of these infections if you look hard enough, just like all/most children have had a strep infection? But, there is something wrong with the immune system of our children that results in the neuro-psych dysfunction. Maybe the infections are VERY common, but their body's reaction, processing of, storing of is not??

 

My dd10's myco-p IgG DOUBLED when comparing a month before IVIG to 9 weeks after IVIG indicating a high measurement in the population at large adding to her system but no negative change in symptoms.

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Dr. Ann Corson had a fabulous speech today at the ILADS conference in New Jersey. She said that children with lyme will sometimes only have neuro/psychological symptoms. Dr. Corson said that movement disorders, handwriting, vocal and motor TICS, OCD, sleep issues, depression, suicidal thoughts, etc.... are all symptoms of neuro/psychological lyme.

 

Both of my children have strep, mycoplasma and lyme issues and they have such different symptoms. My daughter only had TICs when she had strep and my son had tics off and on with all the microbes. They both had separation anxiety with all microbes.

 

I am not sure if we can always differentiate between which microbes cause which symptoms. I keep trying to find correlations myself .....

 

Elizabeth

 

I think you can have only one thing as a presentation to an illness, ie just rages, just tics, just anorexia

i think each person has a specific or specific group of presentations to desease, that they are prone to exhibit.

now if you stay ill long enough, others presentations might emerge as the body gets tired and the invading germ is winning

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Dr. Ann Corson had a fabulous speech today at the ILADS conference in New Jersey. She said that children with lyme will sometimes only have neuro/psychological symptoms. Dr. Corson said that movement disorders, handwriting, vocal and motor TICS, OCD, sleep issues, depression, suicidal thoughts, etc.... are all symptoms of neuro/psychological lyme.

 

Both of my children have strep, mycoplasma and lyme issues and they have such different symptoms. My daughter only had TICs when she had strep and my son had tics off and on with all the microbes. They both had separation anxiety with all microbes.

 

I am not sure if we can always differentiate between which microbes cause which symptoms. I keep trying to find correlations myself .....

 

Elizabeth

 

I think you can have only one thing as a presentation to an illness, ie just rages, just tics, just anorexia

i think each person has a specific or specific group of presentations to desease, that they are prone to exhibit.

now if you stay ill long enough, others presentations might emerge as the body gets tired and the invading germ is winning

 

I think that everyone has their "main" symptoms but I don't think it's right to say that you can have only one thing as an initial presentation of an illness. Lots of overnight onset P.A.N.D.A.S. kids wake up with multiple presentations at once. Sorry if I misunderstood what you were trying to say. :/

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Can we examine this more? I know it isn't scientific per se but I'm trying really hard to understand.

 

So this long list of infections, Lyme just being one of them (but the "lyme" name is the one that is being generalized) have what in common? They get into your system from some insect (NOT just ticks) "biting" (really they are stinging or piercing you) and that is what is separating those infections from strep? Can you get strep from an insect bite??? You can get strep and staph through the skin, so I would imagine you can, just not sure you can get it from an insect. But myco-p and strep are different because those bacteria can spread through human secretion? And the others on the "lyme infections" list...not by secretions, but can be passed congenitally?

 

HOW IS THIS NOT ALL PITAND???? If we examined extensively 1000 random children, how many would pop positive for 4 or more infections on the list?? Any studies on the list of infections (I don't want to call it Lyme bcs that is deceiving, that's just ONE of them) in the pediatric population tested and retested to the extent we are hearing of here? If evidence of several of these infections having made their presence known in childrens' systems is "common", then wouldn't the difference in our children be the t-cell/b-cell dysfunction? What about Dr. Trifiletti's theory about the toll-like receptors becoming overloaded as each infection "piles on" to a child's system?

 

I've shared this a gazillion times; one of my dd10's WORST OCD symptoms was getting "bug bites" and scratching them until they were an open wound and then picking at the open wound over and over and over.....until several of them became ulcerated...the silver lining being that this scarring, dramatic, self-injurious behavior is what finally got us on the right PANDAS/PITAND track. (Of note, Dr. Elia's exact words were "I suspect there is a bug or "infection" involved here-she was right, just not very willing to DO much about it!!) DD has had 1 tested "lyme" negative tick bite (the tick itself was sent to IGENEX in 06-who knows if they tested it for the whole list!) BUT she's had HUNDREDS of insect bites. The most dramatic and undeniable improvement from her IVIG in May is that this has been the first summer/fall in 5 years where the whole bug bite issue has been non-existent!!!

 

Maybe the name change will be good and bring this all together if it is all the same mechanism of system dysfunction rather than what flavors of infection has your child scooped-up.

Edited by JAG10
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These are all very good questions. But probably none of us “lyme parents” here can do justice in giving you information (on making some sort of differential diagnosis between lyme/other and pandas). However, there are excellent doctors who can, and do, provide this information. And a multitude of published information.

 

At the risk of saying this again, as so many others have done, but yesterday’s ILADS presentations (that streamed video live) were made by doctors teaching other doctors in the audience how to do a clinical evaluation of a suspected lyme (or other pathogen) patient, and how they perform the differential diagnosis for these diseases using history, lab work and physical exam. They went into excruciating detail about symptoms, lab work, subtle signs and big signs. They are the best of the best, and they are not pulling diagnoses out of thin air. They provided a monumental amount of information about these infections. And key to the treatment is specific and tailored combination of abx, based uniquely on each patient's situation.

 

But the big takeaway is this: nearly every single doctor talked of the multi-infectious patient. They said over and over things like “cascade of illness”, “domino effect of disease”. They were nearly all preaching that rarely do these infectious patients exist with only one bacterial or viral infection. Many of them talked about strep and Pandas. They talked about the mycoplasmas! All of them – the myco p’s, the myco fermentens. They talked of opportunistic viruses taking hold like the herpes viruses and Chlamydia, ebv. There are fungal infections. Yeast. Allergies. Lots of talk about autoimmunity!!! Infectious triggered autism came up several times.

Nobody talked about lyme in a bubble.

 

Let’s forget the labels for a moment. Chronic infectious disease – bacterial or viral – is going to give a UNIQUE DISEASE EXPERIENCE to every single person. You need a doctor who is going to approach you with this understanding. It truly is an onion to be peeled away. Some people’s onion only has a layer or two. And some people’s onion has many, many more.

 

Dr. Corson has been used as an example here because, in my opinion, she gave as a**-kicking presentation on these infectious diseases in children – with lots of compassion and understanding. And for all you Pennsylvania people (where she practices), she had lots of specific information about the presentation of these infections in PA (and bordering states). Which as most of you know, is ranked right up there at the top of the list for cdc reporting of tick borne diseases. She took CHOP to task several times (although not by name!). She did talk about strep and pandas.

 

For anyone who did not watch these presentations, I would strongly urge you to. NOT because I’m telling anyone they have lyme! But because these doctors go into such amazing detail about evaluating for many, many diseases that might play a role in your child’s illness. If your child is not making the progress you think he/she should with your current treatments, please consider that more infections/viruses may be involved.

 

Here is a link to order, the two I would most recommend would be Dr. Corson and Dr. Horowitz (as his was quite comprehensive on many bacterial and viral infections, and was especially of interest to anyone on the east coast as he gave lots of detail).

http://www.tfaforms.com/180790

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But the big takeaway is this: nearly every single doctor talked of the multi-infectious patient. They said over and over things like "cascade of illness", "domino effect of disease". They were nearly all preaching that rarely do these infectious patients exist with only one bacterial or viral infection. Many of them talked about strep and Pandas. They talked about the mycoplasmas! All of them – the myco p's, the myco fermentens. They talked of opportunistic viruses taking hold like the herpes viruses and Chlamydia, ebv. There are fungal infections. Yeast. Allergies. Lots of talk about autoimmunity!!! Infectious triggered autism came up several times.

Nobody talked about lyme in a bubble.

 

Let's forget the labels for a moment. Chronic infectious disease – bacterial or viral – is going to give a UNIQUE DISEASE EXPERIENCE to every single person. You need a doctor who is going to approach you with this understanding. It truly is an onion to be peeled away. Some people's onion only has a layer or two. And some people's onion has many, many more.

 

 

 

 

just felt this was worth highlighting!

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