follow up appt tomorrow--and we're doing well!

[kmom]

My two PANDAS kids (dx'd PANDAS May '10 but never made huge strides till we investigated/treated for Lyme/Bartonella) and I started Lyme treatment just before Thanksgiving. I've been apprehensive to post any strides b/c I feel like I am always waiting for the other shoe to drop. But...we've turned a corner! How long will it last? Not sure but sure was nice to have a good Christmas/New Years. I was so ready for things to spiral backwards after returning from our holiday trip to Florida--kids were on a high to see grandparents and family but was afraid returning home and back to school could set them back. But I have to say this past week has been the the best my DD9 has been since last April! Everything was just back to normal and easy. She even noticed. She woke up this AM and said, "Mom, have you noticed I haven't had a meltdown in a while!" I was hoping she'd notice. This week was finally like the all the other weeks of her life pre PANDAS/Lyme/MycoP/Bartonella. My DS6 is also doing much better. He still has some frustration/aggitation/anxiety but overall it's a new world. They still have the popping and cracking joints here and there but the pain and neuropathy has surpassed. My pain/arthritis symptoms are still noticable but much better. Much of the brain fog has lifted...still feel "dumb" and forgetful sometimes but not as bad as it was! We head out to our follow up appt. w/ LLMD tomorrow. I am prepared for him to switch up meds and know we all could go backwards but knowing we reached a level of peace for a few weeks was really refreshing!

 

Oh and in meantime our local dr. tested my DH and he came back with the following results:

 

IgG 41 +

IgM 23 +

Vit. D is 16.9...we're all low but he's the lowest!

CD 57= 160

IgG Chlamidia pneumonia +

IgG Epstein Barr Virus +

IgG HSV 1 +

 

I used to always say he had narcolepsy b/c he'd fall asleep at parties! Not kidding. Maybe that was the Epstein Barr??? He had a tick on him 16 years ago. He has symptoms that correlate w/ Lyme so we're bringing his results w/ us to the LLMD tomorrow for review.

 

I realize we could have a long road ahead of us but I feel like we are FINALLY on the right track. I type this as I hear the host of Nightline talking about the number of preschoolers on anti-psychotic drugs for rage, bi-polar, etc. and can't help but wonder if any of these kids have Lyme b/c their behavior is quite familiar...

[KeithandElizabeth]

What wonderful news!!! I am so happy for you and your whole family.

 

We, as families, are so often are on this forum looking for help and then not everyone comes back to post the positive updates. So thank you so much for sharing!

 

Elizabeth

[Suzan]

That is great news! I needed to hear some good stories so I thank you! I hope you continue on this great path and that your DH gets some help too.

 

Susan

[kmom]

I was so sleepy writing that, I forgot the most important part...THANK YOU so far to all who have led me in this direction. If it weren't for you who walked this road before me, we'd be at rock bottom still and it's a lonely, scary place.

[philamom]

kmom-wonderful, wonderful, to hear! good luck with your follow-up appt!

[PacificMama]

K-Mom... awesome news! Keep us posted.

And I agree about hearing about the epidemic of young kids on psych meds. It's heartbraking, and I definitely think there is an infectious componenet to much of it.

 

Mary

[sf_mom]

K - Mom: EEEEEEEEEEEEEEeeeeeeeeeeeeeh, A big internet shout of joy. Congratulations, also on the long hard battle on behalf of both of your children. Those blips when antibiotics are rotated will become less and less noticeable. We just changed up protocol and added a third antibiotic for our older DS.... his response was a total of 48 hours with only 'I'm not feeling well symptoms' and is trending better than ever now.

 

Please continue to update. Its always nice to hear great news!!!!!!!!!

Edited January 7, 2011 by SF Mom

[JuliaFaith]

So glad for your progress! Thank you for sharing.

 

After 2 mos. on lyme treatment my ds13 commented this morning that we had a good week of schooling (no opposition like before) but did not connect it to his treatment. He is doing an on-line school but I am supposed to be his 'coach.' Has been very difficult at times but after reading your post am hopeful that he is actually feeling better and that this could possibly continue.

 

Best wishes on continued recovery!

[LNN]

KMom - so very happy for your whole family!!!!

 

Because I owe Elizabeth a thanks for giving me that extra lift when I was at my lowest just before our lyme/bartonella dx, I'll post our own positive update (but will bury it in this post lest I jinx things).

 

We started lyme treatment in October and saw very positive results almost immediately. But I was worried about strep season and how the winter would treat us. So far, all the pills he's taking seem to have protected him from everything but the mildest of colds. At every follow-up visit, the LLMD would ask us to rate symptoms and one spot asked "what percent are you at (how close to 100%). I told him I can't answer, because DS got sick in kindergarten and is now in 3rd grade, so I have no idea what 100% looks like, and just when I think we might be there, he makes another leap and I realize it might still get even better.

 

Today, I picked up DS at school and he told me his teacher wanted to speak to me. I gave him the hairy eyeball and he said "No, it's good". She showed me a writing sample he did today that blew her away, it was so dramatically better than what he could do in Sept. It was right on target for his grade level. She said he's had an awesome week. He was also Top Reader for the month of December, meaning he read the most minutes outside of school (1,315 - which is almost 22 hrs). In August, he couldn't read one sentence without losing his place, unable to decode words, zero fluency, zero comprehension, subsequent meltdown. It's like watching him wake up after a three year coma.

 

Like everyone else, you say these things to give encouragement (and yes, to brag) but then you wait for the other shoe to drop. We also know there's a cyst busting period ahead of us, so I'm not taking this for granted. It could slip for awhile again (and my daughter is having her own issues - ugh). But to see the look in his teacher's eye - to know that she now sees what I've been telling her, that she believes - the two of us got teary eyed (much to my son's embarassment).

 

It's like the scene in Polar Express where the Conductor tells the boy that some things we see are not real and some of the realest things cannot be seen. We know our kids are in there. It's incredible when our faith in them finally pays off and the rest of the world can finally see it too.

 

Kmom - didn't mean to hijack your post. But thanks for giving me an excuse to join in. I hope everything went well today!

[sf_mom]

Geez, LLM Congratulations!!!!

 

AND, I too logged onto the forum this morning thinking I owe my entire families good health to Elizabeth's persistence in testing for LD. Initially, she was persistent with another good friend who's daughter wasn't seeing full remission of symptoms post many hdIVIGs who ended up being positive. Now, doing well. Then she chased down my girlfriend here in SF when her son also wasn't doing well post 3 hdIVIG and he ended up positive. Again, doing similarly well. It took me six months to test..... and now all THREE OF MY KIDS are doing well. I truly believe my daughter was saved from an ASD diagnoses. I will be forever grateful for that persistence.

 

I will also say... I stopped trying to give percentages because I too no longer know what 100% means for my children. I always thought it meant no OCD and no TICs. We are beyond that point and having a new awaking for all our children.

 

-Wendy

Edited January 7, 2011 by SF Mom

[PacificMama]

Love hearing all the positive updates today! (Congratulations LLM... wonderful news for you too!)

 

Mary

[justinekno]

That is wonderful news that you heard today! I am so happy for you and your family.

 

KMom - so very happy for your whole family!!!!

 

Because I owe Elizabeth a thanks for giving me that extra lift when I was at my lowest just before our lyme/bartonella dx, I'll post our own positive update (but will bury it in this post lest I jinx things).

 

We started lyme treatment in October and saw very positive results almost immediately. But I was worried about strep season and how the winter would treat us. So far, all the pills he's taking seem to have protected him from everything but the mildest of colds. At every follow-up visit, the LLMD would ask us to rate symptoms and one spot asked "what percent are you at (how close to 100%). I told him I can't answer, because DS got sick in kindergarten and is now in 3rd grade, so I have no idea what 100% looks like, and just when I think we might be there, he makes another leap and I realize it might still get even better.

 

Today, I picked up DS at school and he told me his teacher wanted to speak to me. I gave him the hairy eyeball and he said "No, it's good". She showed me a writing sample he did today that blew her away, it was so dramatically better than what he could do in Sept. It was right on target for his grade level. She said he's had an awesome week. He was also Top Reader for the month of December, meaning he read the most minutes outside of school (1,315 - which is almost 22 hrs). In August, he couldn't read one sentence without losing his place, unable to decode words, zero fluency, zero comprehension, subsequent meltdown. It's like watching him wake up after a three year coma.

 

Like everyone else, you say these things to give encouragement (and yes, to brag) but then you wait for the other shoe to drop. We also know there's a cyst busting period ahead of us, so I'm not taking this for granted. It could slip for awhile again (and my daughter is having her own issues - ugh). But to see the look in his teacher's eye - to know that she now sees what I've been telling her, that she believes - the two of us got teary eyed (much to my son's embarassment).

 

It's like the scene in Polar Express where the Conductor tells the boy that some things we see are not real and some of the realest things cannot be seen. We know our kids are in there. It's incredible when our faith in them finally pays off and the rest of the world can finally see it too.

 

Kmom - didn't mean to hijack your post. But thanks for giving me an excuse to join in. I hope everything went well today!

[philamom]

LLM- love the Polar Express Analogy. Great to hear your son's accomplishments!!

 

Kmom- how did your appointment go?

[kmom]

Thanks everyone for the kind words and for celebrating w/ me. I know how good it makes me feel when I read you and/or your children are progressing. It fills me w/ the hope I need to get through this ugly disease. I was so reluctant to post all week b/c I was afraid to ruin our good streak!

 

Our appt went well. I really like out Dr.(thanks again Tpotter!!!)--just so logical and has info to back up what he does/thinks. I always feel better after talking to him. And he's so willing to answer questions with definite answers. During my PANDAS journey, our specialists, albeit good ones, were never focused too much on boosting the kids' immune system w/ good things like essential vitamins. The immunologist was wishy washy. I'd ask how much fish oil, amts of DHA/EPA, how much vit. C, etc. I got the standard, "Oh just get fish oil @ GNC. A multi vit. should be good enough for vit. c." Yeah right! This dr. b/c he's a reg. MD and nutritionist actually goes over the amts of each vitamin, hits upon "contaminant free" fish oil, etc. He even test my urine for Vit. C to see how much I had and needed. His philosophy is use oral abx if not allergic and GI tolerates well (pushes probiotics to help and I agree) and boosting immune system by targeting those minerals and vitamins you're deficient in and from there, body with the help of abx will kill those nasty Lyme/co-inf. buggers. Oh, he also believes in removing heavy metals/toxins. We did hair test on kid a month ago but I highlight my hair so I couldn't do the hair test. Had to get the injection of DMPS and then collect urine for 12 hrs...that was a funny scene...driving home the 2.5 hrs., stopping at Chipotle for dinner and bringing in my urine collection container. Thank goodness I had a tote bag. We all had a good laugh at least. I thought, if kids tell their friends, they'll think we're so bizarre! It's bad enough we're the "Chronic Lyme family" but their mom totes her urine around into restaurants?!

Will they ever get prom dates?! LOL!

 

Dr. kept DD9 and DS6 on Augmentin, Azith, Rifampin, Diflucan, Low Dose Naltrexone, Tagamet (Histamine blocker b/c we've had allergic reactions w/ DD--scary one @ bowling alley a month ago from the chemicals used to wax the lanes) and vit/supplements. He added the 1x/month bicillin shot. Actually he Rx'd that 6 wks ago but long story, never got it till this appt. I wanted to use Emla cream as Cobbiemom suggested but Dr. had shots right there and thought let's just do it. DS was a complete trooper. Didn't shed a tear but turned green w/ pain after it was over. DD was a mess and Dr. offered Emla Rx for next time after he heard her wimpers! The Dr. also added Pectasol (sp?) to reduce metal toxicity...anyone familiar w/ this?

 

As for me, he was really happy to see that the symptom questionnaire he had me fill out after the 1st appt in which I scored a 39 overall for symptoms was now down to an 8 after 6 wks of treatment. It's a handy form. After filling it out (0-3 scale according to severity of symptoms), you add up the score. Then you go back and add up single * symptoms and double ** symptoms and fill in the score. The non starred symptoms refer to Borrelia. * symptoms refer to Bartonella and ** symptoms refer to Babesia. The time I filled out the form, I had a high incidence of Bartonella symptoms, just like the kids. I had a low incidence of Babesia symptoms. It was neat to see how I improved over the 6 wks. You can think, "I feel better!" but seeing it is refreshing. It reminded me how far I had come. I told the Dr. that symptoms I scored a 2 (moderate) felt off the charts bad like a 4 while herxing. He said,"Good. I wanted you to leave here and feel awful. It helped me know was going on & you are on the right drug." He was so happy to see all 3 of us responding so well but warned us that each "peeling of the onion layer" will make us feel worse but each layer the herx usually isn't as bad or long. He added Ceftin & Diflucan to my mix of meds. Also, for some reason, I didnt' hear (major brain fog last appt) him tell me to take Iodine Synergy and digestive enzymes. Anyone take these? Was wonder if/how it helps. Digestive enzymes for gut issues and/or bc I had gallbladder removed a few years back. He told me that next month he'll add Flagyl and in about 3-6 months when we're hopefully at the 11th hr of treatment which means no more herxing and symptoms, he'll treat w/ meds for 2 more months and be done. Oh and that my CD 57 that's a 38 should get up 150-200 mark by the 11th hr of treatment.

 

All in all it was a great appt. Unfortunately, the kids have herxed from the Bicillin shot. I could tell w/in 6 hrs or less w/my DS that he was ramping up w/ ODD type symptoms. It was literally like a light switch turned on the symptoms. My DD started w/ just not feeling right Sat. night. By last night, both had major meltdowns. Guess we're back to regular epsom salt baths. It's so sad to go backwards after being meltdown free for probably 4 wks or more but that was a great stretch we had going and I am very confident we'll get there again. They are both home from school today b/c DS didn't sleep well. Up a bunch of times crying in sleep from nightmares and restless sleep--seems to be from herxing when I look at patterns of this since it's not his normal routine. He also has major shoulder joint pain and is cracking. He's extra aggitated today and told me they are never going to get better and why do they take meds. It's so hard to explain this to adults let alone children. I explained the whole "worse before better" concept and asked him to trust me. Anyone out there dealt w/ herxing from bicillin shot? Does it last a long time? I feel edgy and more arthritic type pain & popping from my meds addition. Trying to keep my chin up but just a Lymie day.

 

PS--LLM, please don't apologize for hijacking the post. U didn't. I love good news. It really fuels me!