We are in trouble, need help

[aidansmom]

Can you guys tell me more about clostridia? Is it the same as C-diff? It sounds as if it can causes violent behavior. What are the main symptoms? (besides the behavior?) My son tends toward constipation - not diarrhea. Could this still be a problem for him?

 

Dawn - I just read your post. I guess I had skipped over it. Praying for you and S&S and families.

[JuliaFaith]

I treat yeast (3 years, before antibx) and it always comes back. I give massive, quality probiotics.

Some say you will always have yeast if there are heavy metals present- she has those present.

Hello S&S: So sorry to hear about your daughter and hope you find some answers quickly!

 

When you mentioned the yeast, it reminded me of a statement made in the methylation article posted recently:

 

"Heavy metals play a big role in NeuroImmune syndromes. There is a synergy between Candida, yeast, virus and heavy metals. People may address Candida only to find that it comes back repeatedly which may be an indicator of an underlying heavy metal issue."

 

http://www.betterhealthguy.com/joomla/blog/265-methylation

 

My son is on his 2nd treatment for yeast, and is also taking Valcyte for viruses, and suppositories for heavy metals, all at the same time. For my son, viruses have been the most difficult to treat. With mostly natureopathic/homeopathic (along with a month of Alinia) he was able to get thru the lyme/babesia stuff pretty well. Of course, his thyroid and other health issues were being treated at the same time, as well as, support for organs/anxiety etc.

 

Did'nt you just start seeing a new doctor? How is that working out? Just keep thinking if you get a really good dr. they can get your daughter on a good combination of things that all work together to heal her and help with all the rest (detox, rages, organs etc.) while the healing is going on. Before our current dr., I took my son to an acupuncturist who practiced Chinese medicine, and she knew way more than all the other doctors put together (including specialists). So hope your finding someone good to work with daughter.

 

Hope you can find some time to yourself to re-boot - this treatment stuff can really take its' toll, especially when you are treating and taking care of 3 children and you are not feeling well too! You are amazing just being able to deal with all of that! Having 'faith' is the first tier of healing (according to this one doctor I spoke with several times) and I believe it is true, but has been difficult at times. Just spoke with my friend fighting breast cancer and reflected that F.E.A.R. means that (f)orgot that (e)verything will be (a)l®ight.

 

Best wishes for you and your family! Sending healing thoughts your way!

Edited April 5, 2012 by JuliaFaith

[philamom]

Can you guys tell me more about clostridia? Is it the same as C-diff? It sounds as if it can causes violent behavior. What are the main symptoms? (besides the behavior?) My son tends toward constipation - not diarrhea. Could this still be a problem for him?

 

Dawn - I just read your post. I guess I had skipped over it. Praying for you and S&S and families.

When my dd had c-diff two years ago (b4 I knew about lyme), her symptoms were alot like what S&S described. She was very aggressive and constantly lashed out at me. She would growl at my husband - he was not to speak to her (which is the oppositie of their usual relationship, he's the fun one). She was eight and I was astonished at the strength this little skinny girl had. Since my husband couldn't be in the picture (we tried- it just made things awful and prolonged the amount of time to get through a tantrum), I put up with the worst of it. I remember breaking down crying at night when everyone was finally asleep (which took hours for her), and yet it was my favorite time of the day because I wasn't being verbally abused and lashed out at. She couldn't be at school and the teacher they sent out for 5 hours a week couldn't deal with her. She was in 2nd grade. She also had c-diff twice when she was younger - it was probably the same infection that wasn't treated properly though.

 

Her stools were frequent, long skinny ones. When she was younger she had severe diarehia.

 

When we started lyme treatment in Sept 2010, I really increased her probiotics. In Jan 2011, I ran the OAT test with Great Plains and her clostridia was great. The entire result of the test was good.

[tpotter]

On the yeast side of things, there are so many things out there, I was on extremely high dose nystatin and regular dose fluconazole ("diflucan") for long periods of time and they were helpful. The fluconazole can be hard on the liver is what they all say. On the non-prescription side of things, what helped me the most was CandiBactin BR from Metagenics (some acupuncturists carry this but also available from iherb.com) and very strict limitation/avoidance of grains (due to the carbs).

 

Thinking of you!

 

 

Candibactin is also really helping DS19 (he can not longer take abx, because of c-diff.) But, we also started him low (1 pill twice a day.) On the flip side, we gave it to DS16 about 1/2 a year ago, and our holistic chiropractor had told us to take 2 pills 3 X per day. Wow. did he have such a massive herx, he had to go to the ER. Now, he's afraid to even try again. My point is, "go low, and go slow" (even with herbs.) But, Candibactin is supposed to be good for bartonella, and that's part of what we're fighting.

 

Again, give the peanut/peanutbutter a try if it's possible. It's honestly what saved us for 4 years before the PANDAS dx, and 7 years before Lyme was diagnosed. If it works, I'd give your DS peanut butter throughout the day (mine hated it, so it was only possible to do when he was having a rage attack.

[Suzan]

S&S, just sent you a PM, but, wanted to also say, after reading these posts, it reminded me.... dd10 recently tested for white blood cells in her urine. She had no symptoms for bladder infection but she was very emotional and having emotional episodes several times a day that would last for hours. She was tested a couple of times for bladder infection but it never grew in the culture. She finally went through the abx treatment anyway and things improved greatly. Finding hidden infection of any kind has got to be key in improving the situation. I don't know about c-diff but it sounds like a good theory.

 

HUGS.

 

Susan

[hatepandas]

I only posted once about a year ago, but this sounds like something I went through with my 7 year old child. Dx'd with Pandas/Pans at age 5 and lyme, babesios just last Feb with DR. B.

 

She finally told me that she feels awful for acting so bad, but she doesn't know how to act when she is sooo tired from being in school all day. Allowing her to rest even if it means taking a few days of school off, or trying to make sure she doesn't have much stimulation after school (no music in car, sunshades, her own special blanket in car she can wrap herself up in to tune everything out for a while, no errands right after school, and a good protein snack as soon as school is out)

 

I think her trying to be on best behavior at school even though all the stimulation at school would make her "get a migraine" was all she could take.

 

It also seemed to of course happen around the same time of a sinus infection (she used to get those often) even on twice a day PCN.

[Fixit]

SS and iowa, my heart goes to you both and i will say an extra prayer for your children this Easter Eve.

 

I think i caught most all the posts.

i was going to mention what micheal did about worms..i dont know that ds had them, but knowing how often ds would chew and ramdom things he found on the ground, i would almost doubt he didn't have some ohter internal parasite.

 

over a year ago i put my ds on healthforce internal parasite formula...it did wonders for my ds as far as "panda" symptoms and his tood was a bit better. though we do not have what you ladies are going through.

so besides hitting the parasites it is anti candida with die off control, so detoxes gently at the same time.

 

i might do another round of this since i mentioned it here. i think you can do 3 rounds of this taking a couple weeks off before next round..idk. i really liked this product so much i have bought other by them.

i have, when i have time, trhying to figure out what was so good in this product for ds..i think it was the wasabi..and was in search of other supps with this in it for cleansing and anti-inflam

http://www.iherb.com/HealthForce-Nutritionals-Internal-Parasite-Formula-150-VeganCaps/19273

 

 

ALso, have you tried LDN. when ds was on this a year ago, i dont know if it helped his pandas, but w/i a couple days, he had a blue bird on his shoulder.."good morning mother, how are you today!"..whaaaatt...."isn't today a glorious day"....whaat?. where is my typical spoiled kid.... again ds does not have the"rages" your family is dealing with.

anyway i have heard that alot of people get the same response to ldn for their kids.

our dr just asked us to restart to see if we get something from it this time in regards to his "sot".. as you know it is difficult to know if it is working when you are throwing a thimbal of water on a fire

Edited April 7, 2012 by Fixit

[Fixit]

i also forgot to mention that we just back from a 2 day mini trip.

ds was worse.

i wonder if it has something to do with the hotel room. when ds started this current 3 yr journey, he woke up from the first night in our hotel ticcing. mind you it was the perfect storm..all 3 said they didn't feel good on the trip down to disney, pollen count was the highest it had been in years...ds4 was getting over myco p from the month before and then this musty room, probalby dirty(how clean do you think they actually get these places, and how many really smoke in the room and sneak in pets).

so we are home and ds might be a little better. I think i might need to get a infar thing for when we travel,,,which isn't often. we usually stay with family or friends. and weird thing is...even DH said.."lets not stay at dh's frinds house" as they have animals and are not nearly as clean about it as when we had animals. i felt like dh is finally not thinking i'm crazy with all of these things that other people get to take for granted.

Edited April 7, 2012 by Fixit

[SSS]

The out pour of replies, suggestions, has touched me a lot, and I've taken it all in.

Thank you so much.

This little girl, 7 today, is so complex.

We have done parasite treatments. Not enough, probably.

I'm at a crossroads.

Waiting to see the newest OAT results, try to correct the abnormalities,

and then I might switch her to a ND for Beyond Balance herbal gentle Lyme protocol,

because the yeast and gut issues keep coming back- despite years of special diets and treatments. She has been on antibiotics for 16 months straight-and I would like to believe it's reduced some load of her horrific infections.

She was born with a compromised immuned system, and was fully vaccinated with 36 shots before the age of 5.

Heavy metals are a very strong and destructive issue for her- I don't think I will ever fix the gut until these are detoxed. Gaps diet or not.

I was on this very path with her, had just started chelation, when PANDAS hit, and of course quit, caught in the vortex.

So, I think I may go with gentle Lyme herbs,

and weekend chelation transdermally- (because again with her gut she could never handle oral chelation-)

and suppositories are out.

And with deeply embedded mercury, et al, I am thinking (and my old DAN agreed)

transdermal DMPS or DMSA.

 

Thanks for letting me share--and for sharing with me.

[philamom]

Happy Birthday little girl! May this be a better year for you!!

 

Stay Strong Mama!!!

[LaurenK]

You cannot fix the gut while on antibiotics. It's not possible.

[SSS]

You cannot fix the gut while on antibiotics. It's not possible.

 

 

I'm sorry, I don't mean to sound defensive here, but:

I spent 2 solid years working with this child on strict special diets, all natural treatments, NO antibiotics. Still could not 'fix' her gut. Half way through those 2 years, worked with a famous DAN! as well, in an effort to heal this child's digestive system.

 

My belief now leans toward I will never fix her gut, really, unless the heavy metals and Bartonella can somehow be eradicated.

Or, maybe, this will just be the cards we are dealt.

But you have no idea how hard I tried, for years, way before she was ever put on antibiotics (and she was never on them as an infant or toddler.)

I'm sorry- I am sure you mean well-

But we have some grave, serious underlying issues.

[LaurenK]

You cannot fix the gut while on antibiotics. It's not possible.

 

 

I'm sorry, I don't mean to sound defensive here, but:

I spent 2 solid years working with this child on strict special diets, all natural treatments, NO antibiotics. Still could not 'fix' her gut. Half way through those 2 years, worked with a famous DAN! as well, in an effort to heal this child's digestive system.

 

My belief now leans toward I will never fix her gut, really, unless the heavy metals and Bartonella can somehow be eradicated.

Or, maybe, this will just be the cards we are dealt.

But you have no idea how hard I tried, for years, way before she was ever put on antibiotics (and she was never on them as an infant or toddler.)

I'm sorry- I am sure you mean well-

But we have some grave, serious underlying issues.

 

 

For us, we needed a fecal transplant and then the rest fell into place. You could try this for metals. Its more gentile http://www.worldwellnessstore.com/catalogsearch/result/?q=detoxosode+metals

Edited April 8, 2012 by LaurenK

[philamom]

You cannot fix the gut while on antibiotics. It's not possible.

I know this is not the norm, but my daughter had no GI issues while on a combo of abx for lyme & bartonella treatment. She did have major problems the year before treatment and more recently when she stopped abx in September. I am now seeing some improvement again since resuming abx. Clearly, the bartonella is a cause for my dd's GI issues.

 

LaurenK- you may want to read some of pandas16 posts - you seem to have a lot in common.

Edited April 8, 2012 by philamom

[LaurenK]

I actually did speak with her on a facebook group. Thank you though. I think to say your child had no gut issues but then to say she has an autoimmune disease is kind of contradicting itself? no? Antibiotics can have a lot of anti-inflammatory effects. Are you sure the improvement is not thanks to that?

Edited April 8, 2012 by LaurenK