Jump to content
ACN Latitudes Forums

Lyme


Recommended Posts

What about checking this forums over and over again throughout the day? What is that a symptom of?

 

I am making myself crazy. I am getting off this computer and going to fold the mounds of laundry piling up on my kitchen table.

 

 

:P I got that too! Atleast today....some days I do really well! What is that?? (OCD)

 

Strep can be multi-systemic.....certain strains/infections can affect the upper respiratory system, skin (infections and rashes), heart, lungs, blood, muscle and fat tissue, kidneys, liver and joints. So, even SOME of the physical manifestions of PANDAS and Lyme are hard to distinguish. I think

most LLMD's have Lyme on the brain and are going to see Lyme in a child with symptoms most of the time.......it is what they do.

 

Also, strep is on the rise....a stronger, new strain....yikes!

 

"Is group A strep infection an emerging infectious disease?

 

Yes. Health problems associated with strep A bacteria are not new, but reports of fatal infection with invasive strep A bacteria have been increasingly recognized in the United States since 1987. Researchers do not know why the new strain of strep A is on the increase or why it targets certain otherwise healthy people."

 

Okay, Philly.....going to tackle that pile of laundry I have, too! Amongest some other things!

Signing off for the day....(hopefully....I'll do my best!)

Link to comment
Share on other sites

  • Replies 80
  • Created
  • Last Reply

Top Posters In This Topic

Cheri,

 

I guess I just don't see a good discussion/debate as arguing......as many others do. I don't see agruments in these threads....good debates, discussions, yes! Sometimes, yes, it does go overboard. I have always loved a good, honest, debate! :P

Link to comment
Share on other sites

debate is good! P.Mom :) and having different opinions is good too, as everyone learns from it. As long as it is done with open mindedness and respect, not trying to tell others that their opinion is invalid because one disagrees with it. That sometimes happens here, and makes some members intimidated to post their views, and brings in reports to us.

 

so yup, every now and then we may step in to a discussion to steer it back on topic,

and for that very reason....to OPEN the debate so that all voices can be heard!

Link to comment
Share on other sites

It is so exhausting to think that after years of fighting for pandas treatment, that we have been going down the wrong path. I am interested in investigating whether my dd has any lyme type diseases, I know about the igenex test, but I am still looking for info about ivig and testing. My dd receives ivig every 21 days for an immune def and autoimmune disease, (nonspecific) if I test can the ivig create a false positive or false negative? If false negative, I will still go ahead and test, obviously with false positive it will be misleading and I could be treating an illness that is not there. One thing is for sure about treating for lymes is if high dose abx helps pandas, this is one way to secure treatment. Please don't take that the wrong way, all I am trying to say is, if it helps, it helps and that's what matters becuz we are not docs and from what I gather even our docs do not understand pandas or lymes or nonspecific autoimmune disease or SC or whatever it maybe.

Link to comment
Share on other sites

Such a great discussion!

 

I remember not knowing what Lyme was when reading about it on the forum & wondering why these ticks seemed to love P.A.N.D.A.S. kids so much. I think the reason that they're both seen together so often (as opposed to the getting struck by lightning ten times theory, as someone has proposed) is that for the most part, but certainly not always, P.A.N.D.A.S. kids have crap immune systems. I know I do. This is all just speculation & I'm a baby as far as Lyme goes (only been looking into it for about three months), so forgive me if I'm off base, but the way I look at it is that if anyone in the class has strep/the flu/whatever else, guess who's getting it?? ME, & every other P.A.N.D.A.S. kid. I don't believe it's possible that everyone who's ever been bitten by a tick carrying B. Burgdorferi ended up with Lyme Disease. I DO think it's possible that every P.A.N.D.A.S. kid who finds themselves in the same situation could, simply because the vast majority of us are immunocompromised or just plain old immunolaz. Except for when it comes the antineuronal ones working overtime, of course. Short & sweet, we are more prone to developing infection than the general population.

 

Not only that, but I think that we're more prone to generating an autoimmune trigger as well, since it seems that multiple autoimmune dysfunctions are the rule & not the exception.

 

The one psychiatric distinction that I can think of is just that I hear of more frequent & more intense cognitive fog/impairment in Lyme than in P.A.N.D.A.S., which isn't even really a distinction, haha. I think that disorders with mechanisms as broad & uninhibited as "bacteria inhabiting the nervous system" (Neuroborreliosis) & "antibodies attacking the brain" (P.A.N.D.A.S.) are bound to end up with the same "catch-all" symptoms. As has been said before, the physical symptoms are the main differentiator, as the only physical I symptom I really hear P.A.N.D.A.S. kids dealing with are the gastrointestinal issues every now & then.

 

When the doctor in August asked if I had been bitten by a tick my response was "Well, yeah. About a year... OH MY GOD." as a little lightbulb popped above my head. *ding* At that point I honestly didn't even know that Lyme was transmitted by ticks. He ran the test simply to rule it out & very confused when it came back positive. Only more confused when the second test came back "negative" (his words when it really came back non-reactive). Also positive for MycoP IGG, never tested for IGM. All I knew at the time was that I finally had a possible explanation for the physical pain, I had some weird tests, & in all of my experience I had never once had a doctor hang up & wash his hands of me like that. The more I read the more I realized what a hotbed of contention I had stumbled upon, especially in Texas where there is not a single LLMD because The Texas Medical Board is more than a little triggerhappy with revoking licenses for treating third-stage Lyme. I wouldn't dream of going so far as to say that I have Lyme for now, but I will say that it would make too much sense to dismiss the idea. Appointment with a doctor on Monday just to ask if this is something worth pursuing in my case, or if it's time to go down another road.

Link to comment
Share on other sites

We saw Dr. B yesterday and he has no doubt that DD has both PANDAS AND LYME DISEASE. She shows positive with multiple Lyme-specific bands. He thinks the Lyme is fairly recent -- probably in the past year or so. I'm guessing she got it from one of the horses she rides who was treated for LD over the summer. He says she does not have Myco P. The high IgG levels show a past infection but her IgM is normal, which would show current infection. Aside from the heightened anxiety, intrusive thoughts, scrupulocity, and intermittent knee pain, which only got worse this past year with more aggressive PANDAS treatment, the symptoms that were clearly new were brain fog, getting tired easily, floppy body, and hair loss.

 

I agree with EmersonAilidh, because of their compromised immune systems, our kids are so susceptible to LD and other co-infections.

Link to comment
Share on other sites

For anyone interested, here is the link to today's ILADS confernece streaming video link.

*there are some sessions regarding neuropsych dysfunction, and other neuro or pediatric sessions that people may find helpful.

http://ilads.org/lym...tml#page=page-1

 

Just a reminder... this conference is for medical professionals to share and learn more about tick borne diseases -- research, testing, treatment.

 

Here is today's televised schedule. There will be more this weekend. This is not the complete presentation... just what they are broadcasting live. You would be able to purchase a dvd afterward of the complete conference.

Also as a reminder, this year they are doing a dedicated track to neuropsych/brain dysfunction and tbd's.

 

Introduction to the Lyme & Associated Diseases Society Annual Conference5:00 AM - 5:30 AM [8:00 AM - 8:30 AM eastern] Welcome: Introduction to "The Decade of the Microbe" by Robert C. Bransfield, MD,

Welcome: Is Chronic Lyme Really MCIDS? Future directions in education with ILADS

by Richard I. Horowitz, MD,

Welcome: Lyme Parity by 2012 by David C. Martz, MD

 

Brief History of Lyme disease by Joseph J. Burrascano, Jr. MD5:30 AM - 6:30 AM [8:30 AM - 9:30 AM eastern]This session will discuss a brief history of Lyme disease, clinical presentations of Lyme disease, clinical syndromes impacting the heart, dermatology, CNS, joints, eyes. Corresponding appropriate studies on persistence will be discussed along with transmission. There will be discussion of the thirty eight question questionnaire in clinical practice, issue with diet, vitamins and probiotics

 

Treatment Options by Steven Harris, MD6:15 AM - 7:15 AM [9:15 AM - 10:15 AM eastern]This session will discuss a variety of treatment options including rotation of antibiotics, including IM, IV, PO with names and side effects, medication for symptom relief when antibiotics do not work. Dr. Harris will discuss the role of alternative therapies and endocrine abnormalities seen with Lyme.

 

Basic Psychiatric Lyme by Robert C. Bransfield, MD7:30 AM - 8:30 AM [10:30 AM - 11:30 AM eastern]This session will discuss psychiatric manifestations of Lyme. This includes pathophysiology, differential diagnosis and treatment. Also Dr. Bransfield will address practical suggestions for practitioners regarding psychiatric drugs for depression, anxiety, sleep, memory and wakefulness among others

 

Neuro I by Kenneth Liegner, MD8:15 AM - 8:45 AM [11:15 AM - 11:45 AM eastern]General considerations in assessment of persons with possible Lyme borreliosis (and other borrelioses) and other transmissible co-infections which may involve the nervous system.

 

Neuro II by David Martz, MD8:40 AM - 9:40 AM [11:40 AM - 12:40 PM eastern]This session will discuss specific syndromes like ALS, MS, Parkinsons Disease, Dementia, Peripheral Neuropathy, and potential treatment regimens

 

Co-Infections by Richard I. Horowitz, MD10:30 AM - 11:30 AM [1:30 PM - 2:30 PM eastern]Chronic Lyme Disease: Issues with lab testing, treatment protocols, and differential diagnosis will be discussed in the chronic resistant patient.

 

Rheumatology by Andrea Gaito, MD11:15 AM - 12:15 PM [2:15 PM - 3:15 PM eastern] This session will discuss rheumatology issues in the Lyme patient with an emphasis on ordering tests, interpretation, treatment, and issue of autoimmunity

 

Pediatric Lyme by Ann F. Corson, MD12:30 PM - 1:30 PM [3:30PM - 4:30 PM eastern]This session will discuss how clinical syndromes differ in children. It will offer common antibiotic regimens in children

 

Treatment Trials by Elizabeth Maloney, MD1:15 PM - 2:15 PM [4:15 PM - 5:15 PM eastern]This program will review early and late Lyme treatment trials.

 

0

Link to comment
Share on other sites

 

I agree with EmersonAilidh, because of their compromised immune systems, our kids are so susceptible to LD and other co-infections.

 

and conversely, I believe that if you were born with LD as I suspect my dd's were, you will be susceptible to get PANDAS for the same reason.

 

Susan

Link to comment
Share on other sites

Yes, definitely agree.

 

 

I agree with EmersonAilidh, because of their compromised immune systems, our kids are so susceptible to LD and other co-infections.

 

and conversely, I believe that if you were born with LD as I suspect my dd's were, you will be susceptible to get PANDAS for the same reason.

 

Susan

Link to comment
Share on other sites

You can always following Lyme antibody testing with PCR/provocation DNA/IgG or IgM 30-31kDA confirmation test if you concerned about false positives of antibody testing post hdIVIG.

 

In our situation... because it is Congenital Lyme our children do not make antibodies. Our confirmatory testing was DNA testing via shedding die off into urine which is considered to be 98% accurate.

 

-Wendy

Link to comment
Share on other sites

Still looking for feedback on how ivig distorts lyme test results, false positive or false negative? Anyone ????? This is important, its like taking the IGG tests after your child has taken steriods it may show a child is immunodeficient when they are not.

 

I was told to wait 4 weeks after an IVIG to get the Igenex test. My daughter showed positive to band 41 and IND to bands 31 and 34. Waiting to see the LLMD next month to hear how that all plays out.

 

Susan

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...