21 Comments

1. 

   Cathryn on November 2, 2012 at 9:51 am

   The homeopathic remedy Staphysagria has helped me immensely with my Lyme rage. I used to feel like I was on the verge of exploding all the time (and sometimes I did explode) and when I took Staphysagria I felt like a deflated balloon the next day and then found a happy medium over the next couple of days. Now I only have to take it once in a while when those feelings resurface, but it’s made a huge difference.

2. 

   Barb on November 27, 2012 at 1:28 pm

   Have you had her blood checked for strep too? (ASO and antiDNASEB tests) The hallucinations and rage sound like symptoms that my daughter had from strep that they found in her blood. (PANDAS) The throat cultures would come back negative. The strep was hiding in her tonsils.

3. 

   epiphany on January 31, 2013 at 9:06 pm

   Dear Cathryn and Barb-
   I read here infrequently, but have followed for a few years.
   I am so sorry that you are dealing w/this rage- in a child it is o v. difficult to step back and not be hurt and even damaged by the attacks.
   In my experience, they become very personal, and it can hurt, sting, affect family dynamics in v. destructive ways. I hope so much that your daughter is better.
   I want to thank you Barb, for posting about the homeopathi, I will be trying it.
   Meanwhile, a question re:PANDAS. How to interpret the test results in the absence of a doctor who is educated about PANDAS?
   I have long suspected that our son has this, along with the plethora of tick born things, esp. bart. But the strep titer results confound me???Any ideas? Thanks in advance for any/all responses.

4. 

   Elisabeth on February 1, 2013 at 9:32 am

   In response to the “epiphany” question about PANDAS and strep titres, I can provide a few general observations as a physician who treats many children with this disorder. First, you may wish to review Dr. Susan Swedo’s paper “PANDAS to PANS,” which basically reframes the diagnosis as being relevant to all sorts of infectious origins, including strep, viral, Lyme and other TBDs, etc. Drawing from my clinical experience, it has been my observation that when children have Lyme and related issues, these tend to trump strep in terms of severity of symptoms. In other words, the child who really only has an issue with strep is the one who will be far more likely to respond quickly to treatment for that (often via a pediatrician who is savvy to this diagnosis). The kids with Lyme/TBDs will be more likely to struggle with multiple infections and dysregulated immunity, perhaps more chronic symptoms, and different infections can present with slightly different “flavors” neuropsychiatrically. Bartonella is reputed to be implicated with severe rages, but I think Lyme itself can as well. And yes, the rages have a profound effect on family functioning and parent/child/sibling relationships.
   So in sum, think of PANDAS as really a model for the neuropsych symptoms and autoimmunity that come with either infection itself or the Herxing response to treatment. Consider broad treatment that might cover multiple organisms at once. Ask your treating clinician about things that will help control neuroinflammation in general, this will take the edge of all symptoms to get your child more comfortable during the treatment process. Don’t worry as much about strep titers because they are hard to catch exactly when most elevated, and low titers can mislead a provider to thinking it isn’t a problem (but if they are high, certainly target this in treatment).
   I think Steven’s model is really a very appropriate one to treat this disorder — reduce inflammation, provide symptom relief, repair immune function in a gradual manner, and when things are stable, gently but consistently reduce the infectious load.
   Also, don’t overlook other tools in terms of meditation tapes, personal biofeedback devices, helping all the members of the family find the best language to talk about the rages and feel safer when they occur.
   Just my two cents, hope this helps.

5. 

   RM on March 1, 2014 at 9:59 pm

   I have two boys with PANDAS and one has lyme, and his PANDAS is quite severe. Before proper treatment, he had almost the same symptoms, minus the hallucinations, but many PANDAS kids hallucinate.
   Ibuprofen will greatly reduce and even eliminate many of these psych symptoms. If she doesn’t have liver issues, I would consider giving her Ibuprofen for several days round the clock, and see if you notice a reduction in symptoms. My PANDAS kid with lyme can function on a more normal level after taking Ibuprofen. high dose probiotics can help protect the liver. We now only give Ibuprofen when he’s in crisis mode.
   Some other infections to check for are: strep, mycoplasma pneumonaie, All herpes viruses (epscially HHV6 and EBV), West Nile Virus, coxsackie, hand foot and mouth disease, and the other tick borne infections. My lyme kiddo had 2 viruses and strep and mycoplasma. There are also Cox 2 inhibitor supplement formulas that work like Ibuprofen, but they take awhile to be effective. My son takes Cox 2 flex by Thera mend. Those would help calm the inflammatory process in the brain and body and can be taken regularly.
   I would also consider an immune modulator.We use low dose naltrexone, but with PANDAS it only works about 65%, though works much better on all other autoimmune diseases (I was confirmed this was the case by an integrative LLMD who uses LDN on most of his patients and noticed it was less effective on his PANDAS patients, and I use it for my Hashimotos and have had complete success myself on it.) However, it still helps quite a bit.
   Cannabis oil would probably be the most effective choice, as it is a potent immune modulator, kills lyme and most other infections, and is neuroprotective. I’ve seen posts from several parents of PANDAS kids reporting their kids had complete remission on cannabis oil. Worth a shot if you are able to try it! There’s no THC,so your child has no chance of getting “high” like with traditional medical marijuana.

6. 

   RM on March 1, 2014 at 10:03 pm

   Also,Dr. Sunjya Schweig who works with Hill Park Medical in Petaluma, CA, deals with these tough neurolyme cases. A friend of mine has a daughter with severe neurolyme and PANDAS, many infections, and he is successfully treating her, and also knows how to use immune modulators like LDN. He recovered his son and wife from lyme disease and is an integreative MD.

7. 

   Dan on August 12, 2014 at 12:43 pm

   Hi What type of hallucinations did your son have?

8. 

   MS on February 25, 2017 at 2:25 pm

   I have a girl with PANDAS, age 15, that takes Augmentin for 3 month. The ADNase-B titer has come down from 400 to 300 but there is still no improvement.
   We would like to try the Ibuprofen. How much have you dispensed and with which probiotics did you protect the liver?

9. 

   MS on February 26, 2017 at 10:15 am

   Hi which dose of Ibuprofen did you use with your sons and with which probiotics did yoi protect the liver?

10. 

    Laura on March 9, 2017 at 7:38 am

    My daughter has PANDAS and has been on Zithromax 250 mg for 60 days with significant decrease in symptoms. She is fighting a cold currently and we are seeing some symptoms creeping back (despite still being on the antibiotics). We live in NYC does anyone have a recommendation for a specialist who could help us supplement to support her gut and immune system in general while on the antibiotics? She is taking a probiotic, fish oil and vitamin D but I’d like to provide more support.

11. 

    patricia lange on March 9, 2017 at 8:21 pm

    Would love to know about this integrative MD ? Tried naturopath for 3 months -no improvement on My Lyme/babesia. WAs told by another Lyme Literate person i would need to go on heavy antibioitcs and a pik. Lyme has progressed to the point where my short term memory is zilch. About 3 years ago noticed stiff neck , numbness of fingers and tinglings and then things went to many strange places. So now i am a mess without any true direction. ( but Isn’t that what Lyme is all about no real path or direction….. Any thoughts-thanks-patty

12. 

    Jule on May 17, 2017 at 11:50 am

    You also might want to check IgG ELISA Food Panel
    Blood test for food intolerance.
    I am now focused on eating food below .180 and I
    Am a sweet person not an angry person.
    I now rotate my food so I am less likely to have problems with it.
    Try organic rice for three day and see if the small person has
    Less problems. Unless the small person has a problem with rice.
    I ended up in less optimal places because of food intolerances.
    You are a great parent to be not giving up and trying to figure out what
    Helps.

13. 

    Bradley on May 18, 2017 at 1:55 am

    I would say diet is HUGE for rage issues. I have not struggled with rage since eliminating sugars, and most starches 6 years ago. I dont use any sweeteners except stevia on rare occassion. I will consume organic brown rice, buckwheat, amaranth, and quinoa only. I eat low glycemic high fiber fruits. A good rule is to stick with sour fruits (lemon, lime, green apple, blackberry, pineapple, blueberry). Experiment and see what works best for you, but years worth of experience has taught me that a diet rich in clean protein and heavy in organic vegetables (especially greens) is the way to go.

    Enhancing liver function and detox will also help rage. Lemon water, dandelion tea, whole organic milk thistle seed, chanca piedra, and lots of natural spring water.

14. 

    Bradley on May 18, 2017 at 2:01 am

    Probiotics will also help with rage. Make your own probios, buy capsules, or purchase probio rich foods. Beware that most processed dairy (or even dairy in general) can exaserbate symptoms in many.

    Real raw saurkraut, rejuvelac, and probio capsules are my favorite sources.

15. 

    Serge on May 31, 2017 at 4:34 am

    This thread is old but cannot resist commenting.

    I see DHA for junior in the list.
    This is IMO an absolute no no.
    I tried that kind of product with my daugther (no Lyme) when she was young and she reacting badly, became depressed and had a bad mood. The reaction is similar with myself.
    Never take take more DHA than EPA. The EPA:DHA ratio must be 1.5 minimum.
    DHA products are crap. Use normal complete fish oil or krill.

16. 

    KappaG on June 5, 2017 at 4:47 am

    I am with you 110%. If I eat any sugar at all, I have serious rage, anger, irritability issues. But, as long as I steer clear I’m fine. I remain calm and feeling happy. But the minute I eat sugar (in any form) I become a different person.

17. 

    Pretty on July 24, 2017 at 8:01 am

    It’s worth a shot, my friend had a pic and took Vic c abx, gluthoine, it slowed down the progression, when the iv stuff was stopped she start to decline fast . So neuro Lyme was help by this. But it didn’t totally eliminate the disease. So it came back after a year on abc . New study on stevia by nutramedix elimination the bacteria in vitro though. Its worth a shot to try everything while u can that makes a little sense.

18. 

    sheila on January 1, 2018 at 3:20 pm

    my son has PANS and lyme.had his tonsils out in mid October, seemed for the first few days to be doing great and has now really gone back to severe rage, hallucinations , ocd, paranoid…he has been on zithro for a few months but I am thinking now it is heavy metals and his gut is so bad.He wont take any PBx I know he depleted but cannot reason- ugh
    He refuses to see anyone now, he had been seeing a LLMD for the last two yrs.
    This is so hard he is 24 so I dont have much control.
    Any suggestions from anyone?

19. 

    Katherine on March 28, 2018 at 5:55 pm

    PANDAS can be caused by other infections as well – my son was negative for strep but positive for Mycoplasma antibodies. The Cunningham panel is a great test for PANS / PANDAS. The treatment that took away the rages and OCD in my 9yr old son was helminths therapy (TSO). We are now treating for Lyme naturally.

20. 

    Holly on May 12, 2021 at 7:52 pm

    Would you get headaches with your rage? Where do you purchase this remedy?

21. 

    Elizabeth Irwin on June 18, 2021 at 4:15 pm

    Make sure you very carefully listen! try not to “fix”…but find out if any recreational drugs may also be toxifying liver.
    His esteem may lower if he is self punishing about rage.
    He needs trusted second opinions, it sounds like.
    Not sure about Lyme Protocol but can check S.B. About
    Liver cooling foods
    Cucumber
    Watermelon
    Drinks

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