PANDAS and Lyme

[texascatholic]

For all of you moms who are testing positive to Lymes and Co-infections, have you had any symptoms?

[sf_mom]

My symptoms were the following over the last 10 years in order of appearance: Night waking (3 to 4 a.m.), migrating knee pain that was infrequent and mostly while sleeping (starting putting pillow between knees at night), migrating hip pain mostly at night, afternoon fatigue, headaches, body aches off the charts when I'd get a cold, dizzy spells/vertigo (last summer, only 3 or 4 times), urinary urgency and frequency (felt like I was getting a bladder infection), foot cramps, leg cramps while sleeping, mood switching not indicative of my personality, strange hair loss. I did have a physical in 2009 when I applied for a life insurance policy and I was spilling excess white and red blood cells into my urine.... I now understand this can be related to chronic infection.

 

I did go to different Dr.'s throughout the years for the independent issues: Night waking/headaches/mood switching - I thought were hormonal and stress, dizzy spells were attributed to inner ear infection, urinary issues attributed to bladder infections, leg/foot cramps to vitamin deficiency. etc. The are all mild and very 'age appropriate' symptoms that I rationalized. The most annoying symptoms were the night waking and afternoon fatigue.

 

I did meet another mother at our Dr.'s office who has two son's being treated for Lyme Disease, she too was positive and claimed to have absolutely no symptoms. They are not treating her with antibiotics because its felt her immune system is currently handling the bacteria.

 

Hope that helps. Wendy

Edited November 6, 2010 by SF Mom

[lyme_mom]

Judy:

 

As you probably know, it is often hard to get a positive on the co-infections and I would therefore consider treating the weak positive. Most of the co-infections have a 50% false negative rate. Babesia is one of the only co-infections that is not helped by antibiotics and an anti-malaria drug is used. Both of my kids have babesia and they are both on Mepron for the babesia. I have to say that this has caused the most herxing compared to all of the antibiotics and I would therefore consider treating it this summer while your son is not in school. I really think that these co-infections or the remaining lyme is what is holding your son back from dealing with the strep while he is on 2 antibiotics.

 

I would also consider a high dose probiotic since your son is on the antibiotics and he has already had C. Dif. Custom Probiotics has a great value (you can google their name and get to their web site) and both of my children are on 400 billion units a day and they have had zero gut issues with the antibiotics.

 

I know how difficult and overwhelming this all is for your whole family. I am always torn between researching PANDAS or lyme and how best to treat. There does not seem to be one doctor who is completely versatile in both. Our lyme doctor does believe that when we rid our children of the lyme and its co-infections, then they will have a much easier time handling the strep and any other bacteria or virus.

 

Elizabeth

 

 

 

Elizabeth,

Thank you so much for sharing all of your knowledge!!!!!! My son is on a good probiotic, but I still fear the C-difficile again.

I was really begininning to wonder if he was antibotic resistant to these infections, but you have shed light on my fears.

Dr. Jones did say it would take a minimum of 18 months to treat his lyme completely and it has only been 9. (even today he has been complaining all day of a "pumping headache" which is one of his physical symptoms from the lyme)

I feel very torn myself---Lyme or PANDAS???

 

Hugs

Judy

Doctor Jones told us it would take at least two years to treat my son and he went off his antibiotics after two years and three months so he was right. There are ups and downs in the lyme treatment, at least that is what we experienced. About six months ago my son was really struggling and that is when DR Jones added tindamax. Now he seems to be done with his treatment so I believe it must have helped him. Nine months is not that long for a bad case of lyme and if Dr Jones said it would take 18 months I would believe that. I am wondering if Dr Jones wanted you to continue the tindamax? I agree with the other poster that a reaction like that probably means he still has lyme to kill. Dr Jones put my son on tindamax for five or six weekends. Perhaps he can put your son on weekend tindamax instead of several weeks straight if he wants him to continue with a cyst buster. I hated to see how bad tindamax made my son feel so I can only imagine what a week straight would do. By the second day my son said he felt like he was dying. One time he could not even walk on the second day of tindamax. Apparently the anti yeast medication diflucan is also used to treat lyme b/c it busts cysts.

I love Dr Jones and he is a genius. We also have another wonderful llmd that we have used for the past year and a half and he is an integrative physician. I am glad we have had them both during our children's lyme treatment and they both offer some unique insights. Nobody knows what lyme and the coinfections look like as well as Dr. Jones. I doubt there are too many people who can do the exam that he does and tell you so much about your child. Integrative doctors who are llmds also do some things that can be uniquely helpful and critical to the patient getting healthy again. If you really hit a wall with his treatment that might be something to consider doing for a second opinion. My llmd does not think that ivig works for pandas by the way. Each doctor has their own perspective on this obviously. My local llmd uses bicillin shots plus the lyme treatment for pandas patients. Heavy metals can be a problem with lyme not only b/c it is toxic but also b/c lyme can hide behind mercury in the body. An integrative lyme doctor tests for this. Imagine a huge wheel with a ton of different spokes in addition to antibiotics and each spoke is another tool for helping the patient (heavy metal detox, nutritional supplementation, treating latent bacterial, viral and fungal infections, testing for allergies, mold, etc., energy medicine, emf reduction, etc.) The more you know about all these spokes the more likely you can find the spokes of the wheel that may be holding your child back. Dr. Corson's presentation and the article that was posted by her really covers everything that I have learned about treating lyme with western and complementary approaches. If you read that maybe there will be something that gets your attention that you have not explored like testing for high emf levels in your son's bedroom. We did this 18 months into our son's treatment and discovered that he slept in an extremely high emf area so we cut off the power to his room. Or mold could be a factor...so much to learn. Hang in there.

[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.