Pandas/Lyme Update

[momofgirls]

Yes Peggy that is my point. I just did not word it as well. Kids can have zero strep titers and still make anti neuronal antibodies producing a high cam k. So the auto antibodies are actually a secondary response to the infection. The bacterial antibodies to lyme or strep are not attacking the brain themselves. I could however be off on some of this techy stuff maybe Buster could chime in to explain those anti-neuronal titers better.

I just want people to understand that I think a child could have an elevated cam k without having raised titers to lyme or strep or whatever.

 

So no strep titers no pandas?

 

 

Thanks Momofgirls. The antibodies are from the bacterial infection. 'auto-antibodies' suggest that the antibodies that were supposed to target the bacterial infection, but went awry and erroneously attack a part of the body, in the case of pandas, the brain? so if no antibodies, then no auto-antibodies, i would think.

 

If by strep titers, you mean ASO and AntiDnase, those are actually antibodies to strep exotoxins- they are not the antibodies that are causing basal ganglia malfunction.

[sf_mom]

1) Does this mean your son (or any of your kids) does not have pandas?

 

Our LLMD believes that my son had a hyper immune response in June 2009 (milder responses in June 2008 and November 2007) and his particular trigger was strep. Many individuals with Lyme Disease can be symptomless carrier for years and then they all of a sudden have a trigger: pregnancy, stress, vaccinations, viruses, additional bacteria's, etc. Some become symptomatic slowly and some explode with symptoms. My only symptom prior to pregnancy was night waking for about two years at almost exactly 3:03 nightly. I would then fall back asleep around 5:00/5:30. Apparently, night waking between 3 and 3:30 a.m. is common with Lyme Disease. After each pregnancy, additional symptoms developed.

 

As to the second half of your question.... I have no idea. Hopefully, in time they'll (Dr.'s and researchers) have a better understanding.

Edited September 30, 2010 by SF Mom

[sf_mom]

 

3) How did the dr. discover leaky gut or is it assumed based on symptoms? Meaning is there some sort of test for this? How did he discover a parasite?

 

 

We did stool testing that looked a lot of different issues: Good bacteria, Bad Bacteria's, Yeast, Fungus, Parasites, Inflammation, Enzymes, Absorption, etc. Because he was positive for a parasite and other various results came in very low they determined the mucus lining wall deteriorated... don't forget extended belly with blood in stool (obvious signs). Apparently, Leaky Gut Syndrome is very common in Lyme patients. Here is what our Dr. says in the book Insights to Lyme Treatment.

 

Many of my patients are gluten and casein-sensitive and have lots of food allergies, so eliminating these allergens from their diets is important. In order to heal their guts and decrease 'Leaky Gut Syndrome' I may give them substances such as Xymogen's IgG-2000 GF which are bovine source immunoglobulins that that calm the gut down. I may use this in conjunction with a product called Intestimax, which is a combination of marshmallow, butyrate, and glutamine that supports the integrity of the intestinal lining. Or I might give them Ketotifen which reduces inflammation and promotes healing of the intestine. After this, I will start treating their yeast problems.

 

Our son is taking the IgG Powder/Ketotifen. He was also high for yeast... yeast tends to attached easily to the intestinal wall when the mucus lining has deteriorated. We are currently combating yeast with Epicor (pre-biotic) and Oil of Oregeno. Our Dr. may add more to combat yeast in the future.

 

-Wendy

Edited September 30, 2010 by SF Mom

[justinekno]

Oh my goodness. I never knew this. Where did you find that info? I wake up at 3:00am EVERY night!

 

 

Apparently, night waking between 3 and 3:30 a.m. is common with Lyme Disease.

[smartyjones]

Oh my goodness. I never knew this. Where did you find that info? I wake up at 3:00am EVERY night!

 

Apparently, night waking between 3 and 3:30 a.m. is common with Lyme Disease.

 

 

have you heard of the reason behind this? i've heard it often but never heard the reason. is certain bacteria active after some time of rest? so odd!

[sf_mom]

Our LLMD, MP told me this yesterday... One of the most common symptoms. When I told her I had night waking she wanted know 'what time'. She just smiled when I mentioned 3:03 a.m. and later explained how common it was. Also Alcohol intolerance is another very common symptom. Even with one glass of wine I feel very sluggish the next day.

Edited September 30, 2010 by SF Mom

[sf_mom]

Apparently, it works on the adrenal glands. You will also have peaks of sluggishness or fatigue during the day... mine are in the afternoon around 2 p.m. to 3 p.m. for others its the morning.

[norcalmom]

you're leaving? ..but I understand. I will probably be leaving or taking a break soon too. At a certain point, it just isn't heathy for us to imerse ourselves like this everyday. I'm sort of in the mode trying to give back to the forum, since it gave me so much. And you certainly have done your time in that mode. Thank you for all the advice you given and awareness you have raised.

 

I will PM you my email...in case you want to have coffee (or a coktail) sometime!

[Fixit]

This will probably be my last update to the PANDAS forum.... BUT, I thought I critical, once again, to share our story in hopes it will help some parents desperately looking to get their children help and proper diagnoses.

 

Many of you know our story and for those that don't I'll provide a brief history. Our DS1 (approximately 50 pounds throughout treatment) was diagnosed with PANDAs in the summer 2009 after a sudden on-set following strep related illness (CaM Kinase 124 - 11 days post steroid burst). He was treated by Dr. K with hdIVIG in Sept 2009, Nov 2009 and Jan 2010. Our son was responsive to both the 5 days steroid burst and the 3 hdIVIG. The only adjustments made to Dr. K's protocol is that we found our son to be more responsive to the higher dose Azithromycin 500 m.g. throughout his treatment (we discovered this after 4 times of upping and lower dosage). After our son's 3 hdIVIG treatment we maintained the higher dose Azithromycin for 4 months. Our son's recovery was similar to everyone's 'rocky' with improvement over time. 5 months post his last hdIVIG we added 600 m.g of Omnicef and lowered the Azithromycin to 250 m.g. At that time we saw a rapid resolution to remaining mild symptoms that caused us pause. We also noticed that post hdIVIG treatment our son was improving in 3 to 4 week cycles. He would have a flair of symptoms and then see a rapid improvement with a baseline adjustment upwards, maintain again for another couple weeks and start the process all over again. By the end of the 6 month post his last IVIG treatment he was having many back to back full remission days with improvement in areas we did not realize were related to PANDAS. He had one remaining symptom in June that caused us major distress of blood in his stool and we needed to investigate further.

 

Do to our unique situation of elevated ASO and anti-DNAse-b titers in my husband, my symptoms and all our children's elevated CaM Kinase we choose to see one of the top LLMDs in the country written about in Insights to Lyme Treatment http://lymebytes.blogspot.com

 

We are now just getting more of our family test results back and as many of you know it was discovered I am positive for Lyme Disease. It is also understood by many Dr.'s that when a child gets LD in-utero they often do not makes antibodies for the bacteria because it is not recognized as foreign. Also children with weaken immune systems, may not make enough antibodies to show positive results on antibody testing. We tested two of our children for Lyme Disease via Igenex prior to our LLMD appointment and both were positive for IgM, IgG Band 41 ONLY. However, in light of the blood in the stool in DS1 we kept our appointment. Our LLMD, was not phased at all by the essentially negative Igenex results and proceed with provocation DNA testing. Those DNA results have come back Positive for BB. Apparently, Lyme likes to hide out in the bladder and can often cause urinary issues but it is also why it is easy to pick up the DNA in the urine.

 

They are also suspecting Babesia and Bartonella for our children, as well as myself. I have one common symptoms for Babesia that is maroon/red colored freckles on my stomach (had no idea). My children all suffering from drenching night sweats with the introduction of Alinia also indicating Babesia. I am in the process of being tested for Babesia and apparently the use of antibiotics can produce false negatives so they are using blood that was provided by me prior to antibiotic use and will know those results at our next appointment.

 

Anyway, I am posting our story to help others understand how important it is to investigate throughly Strep, Mycoplasma,Viruses, Molds, Allergens, Lyme Disease potentially contributing to the hyper immune response prior to PANDAS diagnoses to ensure the proper issue/infection is being addressed. At the time we pursued PANDAS diagnoses we had no idea these other infections were a part of the problem. Again, our son was responsive to PANDAS treatment and we will never know if those hdIVIG would have eventually failed. When we recently added Alinia (cyst buster, anti-parasitic, anti-viral, antibiotic) to the Azithromycin we witnessed the largest herxing response to date in all our children. We revisited blips of OCD and flair's of TICs that we have not witnessed since sudden on-set. Our one son is just over 9 weeks into Lyme treatment and he is heading back towards full remission of symptoms. In addition, to discovering Lyme Disease, they found a parasite in intestinal track that he was unable to resolve,, we have found he suffers from 'leaky gut syndrome' due to the breakdown in mucus lining wall of the intestinal track resulting from the parasite and now has a severe reaction to dairy and eggs. We are repairing intestinal wall with a histamine reducer and IgG powder combo. It is all helping and are hopeful that his reaction to dairy and eggs is temporary.

 

My twins are improving with treatment as well. Our DS2 ocd and rages disappeared over the last six months with the use of azithromycin. Both of our twins have Lupus like symptoms with severely compromised immune systems. We are starting to notice the Liveado Reticularis fade. We are very hopeful their immune systems will rebound without more aggressive treatments other than combo antibiotics.

 

Anyway... there are many more details, too much to even mention. Wishing you all the best in the recovery of your children.

 

I understand not wanting to come here.....But....

Please come back occassionally to update us on your family's healing.

[sf_mom]

Just wanted to say that I'm not leaving entirely....

 

I'll be more appropriately over at the Lyme Forum updating as our entire family under goes treatment. Hopefully, posting a little less then I have in the past.... in an effort, to get back to a pre-pandas/lyme life. I am starting multiple antibiotics this morning (anxious) and will hopefully share some of our experience as I begin the herxing, medications, supplements, detox (some of which might be helpful to PANDAS kids). I am very grateful that we are in good hands and our Dr. is only 3 miles from our house.

 

I've attached a list of what I am currently taking for supplements/antibiotics. They are currently testing me for viruses, thyroid function and babesia. They believe I do have some nerve damage (who knew) due to my twitching and has impacted my adrenal system. I've never noticed my twitched but my husband does. I feel fortunate 'today' that we discovered LYME DISEASE because it could have been so much worse if it hadn't been appropriately identified. Although I may be regretting my words as things get worse in a few weeks.

 

Morning:

 

- 1 Trillion probiotics (Good Gut Bacteria)

- Chlorella - 10 chewables (Detox)

- ATP Fuel - 5 pills (Adernal System/Fatigue)

- BSP 201 - 2 pills (not sure)

- Magnesium - 600 m.g. (Liquid Calcium/Magnesium - Whole Foods/Leg Pains and Leg Cramps)

- B-12 25,000 m.g. chewables (Nerve Damage/Mood)

 

Mid Morning/Lunch Time:

 

- Adrenal Essence (Adernal System/Fatigue)

- 500 m.g. Azithromycin/150 m.g. Doryx

 

Dinner:

 

- Chlorella - 10 chewables (Detox)

- ATP Fuel - 5 pills (Adernal System/Fatigue)

- BSP 201 - 2 pills (not sure)

- Magnesium - 600 m.g. (Liquid Calcium/Magnesium - Whole Foods/Leg Pains and Leg cramps)

- B-12 25,000 m.g. chewables (Nerve Damage/Mood)

- 200 m.g. Doxycycline

 

Bedtime:

 

- I Cup Bentonite Clay (Detox)

 

Norcal Mom: I suspect you may be down in my area in the near future.... Coffee anytime.

Edited October 2, 2010 by SF Mom

[P_Mom]

Just a piece of advice SFMOm....MAKE SURE you eat when you take the Doxy and stay out of the sun! I am sure they told you that, but, it is no joke. I am like a kid and have to find out for myself....so, took Doxy on an empty stomach and went out in the sun....two VERY BIG mistakes!!!

[sf_mom]

Thanks, They did mention the sun issue as I am very fair skinned/freckles/do not tan easily.... But they didn't mention to take the Doxy with food and will need to move to lunch time.

 

As you can imagine: nothing but a pill dispenser with not enough time in day.

[P_Mom]

Oh my gosh........what happened?????

Edited October 1, 2010 by P.Mom

[P_Mom]

.

Edited October 1, 2010 by P.Mom

[P_Mom]

Same post popped up about 10 times!

Edited October 1, 2010 by P.Mom