Lyme Disease

[Megs_Mom]

I was surfing the net tonight trying to find some answer for my BIL, who I would swear was a childhood PANDAS patient (although VERY little is discussed about this time in our family....) He is hard to talk to, but I thought I'd send him a couple of articles and was looking for adult studies of OCD. Anyway, he had Lyme some time ago (a while, as in 5-9 years) and his life pretty much broke down in the last 2 years. Could be unrelated, but I found this, which I thought was very interesting:

 

http://www.holtorfmed.com/topics/leptinwei...atric-disorders

 

In relation to symptoms they list:

 

Patients with late-stage Lyme disease may present with a variety of neurological and psychiatric problems, ranging from mild to severe. These include:

 

Cognitive losses

Memory impairment or loss (“brain fog”)

Dyslexia and word-finding problems

Visual/spatial processing impairment (trouble finding things, getting lost)

Slowed processing of information

Psychosis

Seizures

Violent behavior, irritability

Rage attacks / impulse dyscontrol

Anxiety

Depression

Panic attacks

Rapid mood swings that may mimic bipolarity (mania/depression)

Obsessive compulsive disorder (OCD)

Sleep Disorders

Attention deficit/hyperactivity disorder

(ADD/ADHD)-like syndrome

Autism-like syndrome

At any time, patients infected with Borrelia may also exhibit cognitive symptoms such as memory and concentration impairments and word-finding difficulties, ADD/ADHD-like symptoms, learning disabilities, OCD, crying spells, rages, depression, bipolar disorder, panic and anxiety disorders and psychoses - all may be caused or exacerbated by Lyme disease. Disorders of the nervous system have been found in 15–40% of late-stage (tertiary) Lyme patients (Caliendo et al, Psychosomatics 1995;36:69-74). When Lyme disease affects the brain, it is often referred to as Lyme neuroborreliosis or Lyme encephalopathy. Unfortunately, only a small percentage of these patients will be properly diagnosed as having Lyme disease and most continue to have relatively unsuccessful treatment with psychiatric medications.

 

It also discusses that most Lyme tests in regular labs produce a high level of false NEGATIVES.

 

Because blood tests at the top three general medical laboratories in the nation fail to detect a majority or large percent of Lyme antibodies, ILADS recommends use of laboratories that specialize in Lyme and other tick-borne illnesses. Blood tests should not be used to rule out Lyme disease when there is a strong clinical presentation because of the high incidence of false negative results.

 

I don't know if this will help anyone here, but it seems so close in presentation, that I could see how PANDAS and Lyme might be hard to differentiate. Maybe for some kids where you are seeing a real extreme, this would be worth checking out. Although I am wondering - does it matter? I think you shouldn't use steroids if you have Lyme, but I think the same anti-biotics are used. Maybe for a different period of time? Also, I found a couple of articles about IVIG for Lyme - interestingly one said "IVIG is a process that would boost a deficient immune system to help it accept antibiotics better.." Which I just found fascinating, in light of some here that say they get IVIG but their docs won't give the antibiotics (which seems crazy to me....). Does anyone have any studies about IVIG allowing the body to better use antibiotics? There was no source on that article, but if true, seems like it could help with doctors.

 

Again, I am just astonished at how many physical illnesses seem to cause mental illness. The whole symptom treatment now seems nutterly. I don't think I had a single pyschiatrist or psychologist said to check out Lyme or Strep. Really does seem that ruling out should be the first order of business. I feel like I have fallen through the looking glass.

[brooke]

THat is fascinating! Thank you for that information. One of my friends has a daughter who was "unofficially" diagnosed with PANDAS last spring, but has now been diagnosed with Lyme.

 

I assume your child he was treated for Lyme? I think to thoroughly diagnose Lyme, you have to have the "Western Blot (sp?)", which most tests do not do?

 

My mouth is agape because of both the list of symptoms and the fact that IVIG helps the body receive the antibiotics. It seems that IVIG helped for us, but the addition, some months later, of antibiotics has made a big difference!

Thanks for sharing.

[smartyjones]

i have a friends who's 3 children and herself are lyme positive. the oldest boy has symptoms - the other's didn't but she had them tested when he started having trouble.

 

there is an organization - i think it's LIA - lyme in autism. there is a theory that some autism have roots in the mother have undiagnosed lyme during pregnancy.

 

it's truly baffling that we don't generally rule out physical causes when something is wrong mentally!

[Megs_Mom]

THat is fascinating! Thank you for that information. One of my friends has a daughter who was "unofficially" diagnosed with PANDAS last spring, but has now been diagnosed with Lyme.

 

I assume your child he was treated for Lyme? I think to thoroughly diagnose Lyme, you have to have the "Western Blot (sp?)", which most tests do not do?

 

My mouth is agape because of both the list of symptoms and the fact that IVIG helps the body receive the antibiotics. It seems that IVIG helped for us, but the addition, some months later, of antibiotics has made a big difference!

Thanks for sharing.

 

No actually, I really do feel confident that Meg has PANDAS, given the relationship to strep exposure & ear infections - combined with all her other symptoms & the prednisone test. But we started with Lupus & she was tested for Lyme a year ago (not the right tests, I am sure) due to her high ANA levels. But she does not have joint pain or any of the other signs, and I really think all of her inflamation is due to PANDAS. But, I am now obsessed with reading about "causes" of mental disorders. It's amazing information. And I just want to keep learning so that should our course take an unusual turn, I'll be ready. I am readying our family for IVIG, in case that may become necessary, as I know I'll meet resistance, and want to be sure I am well educated.

 

And that is the first time that I've found a comprehensive list of Lyme symptoms.

[Buster]

interestingly one said "IVIG is a process that would boost a deficient immune system to help it accept antibiotics better.." Which I just found fascinating, in light of some here that say they get IVIG but their docs won't give the antibiotics (which seems crazy to me....). Does anyone have any studies about IVIG allowing the body to better use antibiotics? There was no source on that article, but if true, seems like it could help with doctors.

 

I found several, but here's one that is freely available : http://jac.oxfordjournals.org/cgi/reprint/58/1/117

 

Think of it this way, suppose your immune system creates these antibodies but they don't really work so good against the real strep. Well now you get someone else's antibodies and it correctly marks the antigen with the flag saying "kill this". The antibiotics keep the antigen from replicating too fast and now your macrophages can find the marked antigens and engulf and destroy them.

 

So without the IVIG the immune system just couldn't seem to mark the bad stuff (wrong antibodies). Now with IVIG, the borrowed antibodies mark the "bad stuff" for elimination and the host immune system can wipe it out. Antibiotics are more effective because you finally have clearance.

 

Anyway, that's what I think is going on...

 

Buster

[matis_mom]

it's truly baffling that we don't generally rule out physical causes when something is wrong mentally!

I am so grateful that we decided to check out the physical aspect before we took any other steps. The friend who recommended our doctor was taking her severely ill daughter to a psychologist who after a few sessions said, "I really don't think I can help you any further, I recommend you get a thorough medical check up" Wow! God bless him for his honesty! It turned out her child had Lymes and Babesia, and as of last week it seems there may be some strep involved as well. She is not all the way recovered, but she is a lot better To think before that hey spent months going to psychiatrists, trying different drugs, etc, and no one bothered to check for physical causes!