PANDAS they think my daughter has PANDAL = Lyme

[kmb123]

My seven year old daughter just tested reactive for B. burgdorferi with two bands, 41, 58 on the western blot on 6/4/13. Our Pediatric infectious disease Doctor Sharon Nachman prescribed 21 days of Doxycycline Monohydrate and a referral to the best pediatric neurologist in our area Dr. Marsha Bergtram.

We believe that my daughter contracted b. burgdorferi by a tick bite the end of January 2013. The tick was sent away for pathology and came back negative for b. burgdorferi, so I thought she was in the clear (false negative or she was bit by another tick that we never saw). The beginning of March she presented with a few days of fevers, (they would last 24 hours, resolve them come back a week or so later), complaining of growing pains (body ache), headaches, her right jaw hurt, sores in her mouth, a loss in her hearing (put the TV up so loud), but more dramatically a cognitive change since the end of March. She has been reading since she was 2 years old and has always been a talented gifted student.

List of what we have noticed:

• Memory loss, she frequently is forgetting what we did, "I did not eat dinner, what did I eat for dinner."

• Problems pronouncing words that she knew how to say correctly or making basic counting mistakes.
• She did not know what road we were on and it was the end of our own street.
• She has been making poor judgment climbing things acting more like a 4 year old, needing to be reminded that it is not safe to walk on the ledge of the fence in the back yard or climb on the outside of the stairway railing.
• She is forgetting the names of her new toys, so she writes notes to herself of their names and how they like to play.
• She is playing differently, she only wants to play with these new toy's that she writes notes about.
• She is "relying on Brynn in the morning," (her words) her 5 year old younger sister to help her when I am sleeping.
• She became dizzy, walking funny then hit her head on the bus.
• She has had some behavioral changes since the day after Easter
• Crying a lot for no reason is a new behavior.
• Waking a lot in the night for bad dreams and wanting to sleep in out bed is a new behavior
• Playing by herself on the playard at school instead of with her friends that like her.
• Has been anxious and worried (new behavior) that she will loose me.
• Loosing her school work, getting upset and it turns out to be in her backpack.

The Swedish research on lymphocytic meningoradiculitis, Bannsworth Syndrome (referenced by Dr. Nachman) recommendations for treatment with Doxycycline Monohydrate is not indicated for children ≥8 years of age, but she is allergic to Amoxicillian so they went forward with treatment. The research shows that in adults Doxycycline Monohydrate can be an effective treatment for the b. burgdorferi and also against other co-infection tick pathogen human illnesses, such as Bartonella Bacilliformis, b. henselae, b. quintana, ehrlichiosis, but for pediatric neurological presentations with b. burgdorferi in cases >9 years of age a third generation cephalosporins, IV ceftriaxone was more effective then Doxycycline. However Doxycycline is not an effective treatment of b. microti, b. ducani, Babesia or Babesia FISH. Their treatment is usually with Levofloxacin or Atovaquone combined with azithromycin.

US National Library of Medicine National Institutes of Health

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1032595/pdf/jnnpsyc00559-0001.pdf

http://www.ncbi.nlm.nih.gov/pubmed/3070690

http://www.ncbi.nlm.nih.gov/pubmed/1606475

http://www.ncbi.nlm.nih.gov/pubmed/7847012

http://www.ncbi.nlm.nih.gov/pubmed/2782858

http://www.ncbi.nlm.nih.gov/pubmed/3056201

http://www.ncbi.nlm.nih.gov/pubmed/16012005

We had three good doctors appointments here in NY this week.

• Pediatrician Jill Creighton, Stony Brook hospital
• The head of the pediatric infectious disease department at Stony Brook, Dr. Sharon Nachman,
• Dr. Marcia Bergtram, pediatric neurologist, Hyde Park, NYC several hospitals.

The infectious disease doctor confirmed the Lyme exposer and the neurologist believes that my daughter has the equivalent of P.A.N.D.A.S But instead S for strep, she most likely is being affected as P.A.N.D.A.L for L. Lyme.

[Hopeny]

Hi I am sorry you are going through this. Please feel free to search my post on the Western Blot, bands 58 and 41 are not considered significant by most Lyme Literate medical doctors but due to outdated testing guidelines (you can read about this in Pamela Weintraub's book Cure Unknown) the test your daughter had showed positive. Since you had the test I am guessing at Stonybrook, if they have a result that shows all bands you may want to have a look through the results and see what other bands showed positive. The tests are extremely controversial and flawed.

You may find that hospital affiliated doctors do not believe that anything longer than 21 days of treatment is required. Many of us, including research on monkeys that proved that Bb persisted after the "standard" treatment, have found that duration of antibiotics is not sufficient. My daughter had many similar symptoms that you are describing, was given 28 days of antibiotics, then went into a severe debilitating decline a few days after finishing the antibiotics that ended up in her needing a cane to walk and becoming suicidal. Major NY hospital affiliated doctors recommended painkillers and psychiatric medicines. Research I found recommended other options such as antibiotics which I much preferred to medicating my daughter with drugs not studied/approved for use in children. I would recommend considering additional testing for Lyme co-infections and if you do not see improvement possibly considering seeking second opinions from an ILADS doctor. Please note that your current doctors would disagree however as a parent we have the right to seek second opinions on health concerns for our children. You may want to take a look at the ILADS.ORG website. I highly recommend the book Cure Unknown, which was written by a medical journalist and contains many study references. I am not a doctor, these are just my experiences not medical advice.I wish you the best for your daughter. Curious though, where was she exposed to a tick in January? That is really quite worrisome.

[pr40]

our dd9 presented with very similar symptoms except that she had strep 2 months prior. we also discovered lyme but not until a year later. she has been on, now, 9 months of abx and she is gradually improving.

as previous post, i would expect that your dd may need a longer course of abx and perhaps a combo of come kind.

PANDAL would be PANS, right?

Has she improved after you started abx?

[kmb123]

I am reaching out because I agree with you about the testing, co infections and the short antibiotic length. I would do anything to keep her from a decline. I am on a two month wait list for a LLD. Could you tell me about your antibiotics use, what was used, for what what period of time and what co-infections you may have had. She seem to be herxing a little, more symptoms and a new hyperactivity and obsessive behavior since we started the Doxycycline. I can not thank you enough, the diagnosis of PANDA +L is PANDAS symptoms, without strep but with Lyme instead. My daughter would be the neurologist's first case, but at least she put it together correctly, because, I think that is exactly what my daughter has.

[SSS]

Hello---

I'm sorry you are dealing with this, I understand how overwhelming it can all be.

I think the best thing a caregiver or patient can do is start to educate themselves about Lyme disease-

2 excellent books are:

 

The Beginners Guide to Lyme Disease

by Nicole McFadzean, N.D (forward by Joseph J. Burrascano M.D)

 

The Lyme Disease Solution

by Kenneth B. Singleton M.D.

 

Also, this board has valuable history- if you use the search function, you may find information about 'herxing' suggestions to help...

[pr40]

both of our kids are on a combo abx, augmentin and zytromax.

dd9 takes 500-125mg Amoxiciclyn (sp?) x 2 and azitromaycin 250mg x 1. she has 62 pounds.

she is taking the combo since December, amox since Sept last year.

we expect she'll be on abx for a while

[Hopeny]

I am not a doctor so this is not medical advice, this is just what we have used. Typically many LLMD's use combo abx, intracellular and extracellular. Bb is thought to morph into 3 forms therefore single abx not thought to be very effective in eradicating. Older DD with chronic Lyme has tested + for Ehrlicia, Anaplasmosis, Rocky Mountain Spotted Fever and Lyme, shows symptoms of Bartonella. Treated with Doxy 60 days, Augmentin/Biaxin combo 60 days, Zithromax/Rifampin combo (months) and supplements. She has also take Amoxicillin, my opinion (again, not a doctor) is that it is not very effective. Younger DD3 with bullseye rash took amoxicillin for 6 weeks, still had symptoms and tested IGM positive, then treated with Cefdinir/Zith for several months. Also took 3 days of Doxy for IGG+ Rocky Mountain Spotted Fever lab result. Not currently exhibiting pronounced symptoms so in wait and see mode. Older DD had concurrent strep, elevated ASO, Myco P. Both DD's have a complement immune deficiency. From my understanding cefdinir/zith is a popular combo treatment thought to be effective. Have you read Burrascano's guidelines? You can find them on ILADS.org, you may find them helpful. Good luck.

 

Curious can you expand on the January tick bite? Where did it happen?

[kmb123]

We live in Southampton New York and we have had two warm winters in a row. It turns out that the blacked legged deer tick does not hibernate, they require -32 degrees with snow on the ground to not be looking for their next meal.

 

http://www.dnr.state.oh.us/Default.aspx?tabid=23808

 

Thank you for any abx and all the info, I need all the help we can get!

 

Sending lot's of healing love to all of you!

[rowingmom]

Glad to see you made it to ACN. DD11 and I were at the cottage all weekend, so I haven't gotten around to answering your e-mail.

From your posts, it looks you have been searching the archives. Lots of good information there, Keep at it .

 

It looks like you have found some help, and it is a really wonderful feeling when you think you have found someone who understands. However as Hopeny mentioned in her first post, the IDSA is usually averse to treating for more than a couple of weeks, and probably wouldn't think much of multiple abx combinations. Please make sure the LLMD you are seeing is recommended by ILADS. They know which tests to run according to presenting symptoms, and the area of the country in which you live. This group, as opposed to the IDSA, feels that longer term treatment is often required to treat these infections.

 

The PANDASL that your specialist mentioned is called PANS. It is essentially a PANDAS reaction to other infectious triggers; these can include lyme, bartonella, mycoplasma (I'm sure I'm missing some) as well as viral infections.

 

Even before tests were run, our LLMD told me that DD11's PANS symptoms were the result of her bartonella infection. We tested for lyme and several co-infections through Igenex. Lyme was IND, bartonella positive, babesia and ehrlichia negative. We treated bartonella/lyme for 1.5 years with biaxin, rifampin and pulsed tindamax and plaquinel, as well as a partial Buhner protocol (Japanese knotweed and cat's claw), A-L and A-Bart (Byron White). She improved, but always a few symptoms remained. It wasn't until we pulsed a combination of minocycline, tindamax, plaquinel, malarone and azithromycin that her improvement became obvious - a decline of symptoms to almost nothing, almost immediately. After 6 months of that the LLMD decided to give her a break from abx to see how she was doing. No sign of relapse yet, and her executive function, emotional lability and shin pain are still improving - makes me hopeful, knock on wood!

 

DD11 didn't test positive for babesia (protozoa), but the fact she improved almost immediately with the addition of malarone makes me think some protozoan infection may have been involved. Not sure if we will ever find out what it was.

[kmb123]

Thank you, you guy's are the best!

[Hopeny]

Thats really alarming on the timing. Just to add that my friend was treated by a doctor in the hamptons for Lyme, he diagnosed her just by symptoms and treated her for with a good length of antibiotic. You may find a local doctor there who can help in the interim as my guess is it is pretty rampant there. The book lab 257 on plum island may be an interesting read for you once you get through this. New cases that are aggressively treated have the best chance for a full cure.