Need Help!

[h_lee4]

Hello, I am new to this forum and need some help! I am 19 years old and was diagnosed with PANDAS this past July. I was also diagnosed with Lyme Disease through IGeneX testing a few weeks ago. I had a lot of infections that were causing my PANDAS to flare and it took all summer and into fall to get rid of them. Now that they are gone my PANDAS symptoms have been SO much better, I basically thought my PANDAS was gone although I am still waiting to do an IVIG treatment.

 

I started a Lyme treatment about a week and a half ago, the treatment consists of two antibiotics, doxy and ceftin. The last few nights my PANDAS symptoms have been coming back in full force (extreme rage, strange dialects, OCD, and basically I turn into a whole different person) its awful, as I'm sure most of you know. But I am so scared because I thought my PANDAS was gone. I have made plans to return back to my normal life and go back to school because my doctor said I would be better and ready to return. My doctor said my PANDAS would be under control. Now I am terrified that my PANDAS won't be under control by then, because like I said, I thought it was better and this really surprised me. I am doing an IVIG treatment next week to reboot my immune system and hopefully get rid of my PANDAS. But I am afraid that it will not work and how will I even know if it worked or not? Do I just have to wait and see if I have another PANDAS episode because if so that is a very risky way to live. What if I was back at college and PANDAS just suddenly came back like it did this time? That would absolutely be the worst.

 

Like I said I was/am on antibiotics for my Lyme and they could be what caused the PANDAS symptoms to return. But I don't understand why they would cause the symptoms to return? The die-off from my Lyme already causes a herxheimer reaction, could it be causing PANDAS symptoms to flare as well? Another important thing to note is that my flares were not full-on PANDAS until last night. Last night was full-on scary symptoms and yesterday I started taking Nystatin for all of the yeast in my system. Maybe this contributed to the PANDAS as well?

 

Any help would be much appreciated! I'm just freaked out because I thought my PANDAS was mostly gone and I don't know why it came back or how I can prevent it from returning in the future. I hope my IVIG treatment works, I don't know what I'll do if it doesn't. I need to get this under control so I can comfortably and confidently go back to living my life!

[LNN]

It might help you wrap your head around what's happening by considering that you have PANS, not Pandas. Pandas is an autoimmune response to strep. Pans is the same thing, except in addition to a strep trigger, it can also include Lyme, co-infections (e.g. Bartonella), mycoplasma, and viruses. Both Pans and Pandas come with the OCD, anxiety, tics, sensory, urinary issues, brain fog, temporary loss of academic skills, etc.

 

So you may have resolved the Pandas triggers, but by treating the Lyme, you're now experiencing a Pans type of herx, which is more neurological than physical, but stems from the same toxins and inflammation of a herx. And yes, yeast die-off can contribute to the herxing.

 

There are a couple of options. One is to focus on detox - bentonite clay or charcoal as a binder of toxins (taken away from any antibiotics, supplements or other medications), epsom salt baths if tolerated (some people find them relaxing, others find them irritating). Motirn or tumeric or a hogh quality resveratrol for anti-inflammatory. Alka-selzer gold (must be gold - available on Amazon). Taking yucca root or ornithine can help with the yeast die-off. Yeast die off releases aldehyde, which gets broken down to ammonia - a neuro-toxin. Yucca and ornithine can help lower/eliminate ammonia.

 

Another option, which can be done instead of or in addition to the above (with your doctor's ok), is to either reduce the dose of your antibiotics or pulse it - i.e. take them 3 days on, then 4 days off, or take them 7 days on then 7 days off). This gives your body a chance to rest and clear herx byproducts away between waves of antibiotics.

 

If you're interested in using herbs, you can also consider Dan Shen http://latitudes.org/dan-shen-become-important-treatment-pandaspans/

which can help close the blood-brain barrier and reduce Pans symtpoms. At your age, I'd take the higher end of a dose (e.g. 1/2 to 1 tsp 3-4x/day).

 

Also, be aware that for some with Lyme-triggered Pandas/Pans, IVIG is helpful. For some, it produces a pretty significant herx. You're basically super-charging your immune system and it will attack the Lyme using donor antibodies - antibodies your own body may not have been able to make enough of. So it could cause a lot of inflammation while the flood of new antibodies attack the Lyme infection. Managing inflammation will be key.

 

Will you be able to return to school (I assume you mean in January?) Hard to say. But from my own experiences with two Pans kids, there's no way to get healthy without going through the valley of death. Trying to go back to a normal life won't be possible until you tackle the Lyme. So simply stopping Lyme treatment might buy you a month of two. But your Pans symptoms probably won't resolve until you push through the Lyme treatment. You can do so in a gentle, slow manner to minimize herxes, or you can go for a full onslaught of treatments, but one way or the other, you will probably have neuropsych symptoms until the thorn is out of the lion's paw for good.

 

I do hope you're taking a good probiotic (at least 30 billion CFUs) taken 2 hrs away from antibiotics, to help your gut health.

 

The good news if that yes, eventually, you can get back to a normal life. It took my son several years to beat Pandas/Pans and Lyme, but he's been off all medications for 3 years and now only gets a slight "off" feeling when he gets a bacterial infection in the winter. A round of antibiotics or a week of herbal antibiotics gets things right again and normalcy returns. So have hope. It may take longer than you wish, but once you get rid of all underlying infections, you can get your life back.

[rowingmom]

LLM is very experienced and will give you important information. Please take the time to search her archives to see what she has accomplished with her children.

 

 

MTHFR deletions were an important factor in DD15's illness. Inability to detoxify will result in metal and toxin (from infections, but also from pesticides in food/water and vaccinations) overload which compromises immune function.

 

In our case, bartonella was responsible for DD's PANS reactions. And very much like you, her symptoms increased with antibiotic treatment that addressed that infection. If you have been diagnosed with lyme, coinfections are almost certain. Our LLMD told me on our first visit that bartonella was responsible for DD's PANS reactions and that once we had treated that infection properly they would resolve; they did.

 

With herx symptoms including raging and OCD, please consider bartonella as a probable cause.

 

Here is DD's complete timeline:

 

 

Born Sept 2001 – born with light / sound / touch sensitivity. Nursed and slept well, appeared healthy, accomplished first year milestones but with low percentile height and weight. All vaccinations received on schedule.

 

2002 - Loss of speech/fine motor ability 2 weeks after 15 month MMR vaccination. Self weaned at that time.

2004 – Diagnosed with ADHD, Sensory Processing Disorder (light, sound, touch), motor delay (with toe-walking), hypotonia, oral apraxia. Private speech therapy recovered speech by 2007 using the PROMPT method.

 

2005 - Private OT to improve fine motor control.

 

2006 – Enters school system with IEP. Kindergarten accommodations include OT, PT, weighted vest, ear muffs.

2008 - MMR / DPT boosters (told by GP that the original regression was a coincidence) and insect bite (bruise-like rash). New symptoms include: motor/vocal tics, emotional lability (including rage), age regressive behaviour, low level OCD, urinary frequency, diminished fine motor ability, insomnia, loss of executive function. Waxed and waned with strep/viral infections.

 

2009 - School IEP re-evaluated to include removal from classroom for tests with EA available to redirect to task, seating behind a screen for in-class work to reduce sensory overload, more time allowed for testing, decreased work and test load, removal to remedial class for lunch with EA available to redirect to eating. Accompanied by EA to the washroom to prevent wandering.

2010 – Diagnosed with ADHD, Tourette’s, Asperger’s, motor delay, probable PANDAS.

Jan 2011 - shin/forearm pain, cyclic IBS, foot (sole) pain, dizziness, palpitations, chest pain, anxiety/panic attacks, pick-like skull pain, pain and stiffness at base of skull, tingling in extremities, chills and hot flashes, extreme fatigue, nightly fever.

June 2011 - Negative Canadian ELISA, Igenex PCR positive Bartonella henselae, Negative Babesia microti. Negative lyme (IND IgM kDa 41; IND IgG kDa 39, 34. kDa 41++). CD57 18. Positive ANA (speckled type), heterozygous A1298C MTHFR.

 

Multiple Abx, methyl B12, methylfolate, P-5-P, herbal homeopathic and supplement treatment by LLMD.

 

2012 – Vaccine exemptions acquired.

 

Jan 2013 - Bartonella IgG titers declined from 160 (Jun 2011) to 80. CD57 16.

 

April 2013 - Weaned from abx treatment at 80% improvement. Continued with Full Buhner bartonella herbal protocol, GF/CF/SF, organic, pastured, Terry Wahls / PerfectHealthDiet . Minimize EMF exposure.

 

Sept 2013 - CD57 45.

 

Oct 2013 - All symptoms (PANS and pain/fatigue) 95% resolved. No flares with viral or other infections. Herxing remains with changes in herbal protocols.

 

Dec 2013 - Clinical babesia diagnosis. Improvement to 98% with addition of Buhner herbal protozoan treatment. ANA titers negative. PANS symptoms resolved. Regular classroom requiring no accommodations. B+/A student.

 

Mar 2014 - Continued improvement in cognitive/executive function with increased dosages of cryptolepis/sida/alchornea (CSA) tincture.

 

Sept 2014 - Continued improvement with the addition of red root. Resolution of EMF sensitivities with low dose cilantro tincture, diatomaceous earth and psyllium husk.

 

Dec 2015 – To present. Symptom improvement to100% with removal of PUFA supplements (Cod Liver Oil, organic hemp oil). B+/A student in Grade 9, active in Celtic Dancing, curling, cycling, church Youth Group. Remains 1 year or so behind peers in ability to socially interact.