Update from Poland

[Irena]

Hi,

 

I haven’t written for a long time, although I’ve been checking what’s new here almost every day. We have finally found a DAN doctor who is guiding us through all this. What a relief! We’ve done a series of tests: Organix (OAT), hair test, some blood tests for deficiencies. These, together with ALCAT for food sensitivities, give some picture of Staś’ metabolism and condition.

Summing up, the most obvious things are: serious deficiency of B12 (the lowest our doctor has encountered so far), not so serious of B6 and big YEAST overgrow (in spite of six months of the diet, probiotics, garlic, etc.).

So the supplements we have now are:

MB12 injections (we have to get it from the States – he’s taking now B12 shots, very unpleasant and painful)

Glutathion lotion (we have to order it from the US)

L-tryptophan (from the US)

N-acetylocysteine (see above)

P5P (see above – it is available in Europe, although not in Poland, but I will get it all in one shipment)

Some amino acids (this I will have to clarify, yet; we don’t have taurine, but L-tyrosine, which, as Cheri confirmed, elevates dopamine which is not good for tics)

Multivitamin

Magnesium

Antifungal (Flukonazole; first suggestion was Nystatine, but in Poland it comes either in a form of sweet powder containing sugar (!) or red coated tablets and I can’t get any information what this red color really is, so I prefer to stay away from it)

Candida Clear (available in Poland – I am so happy to hear that Cheri finds it effective)

Lithium carbonicum (he tested very low in lithium)

Calcium folinicum

Essentiale forte (for healthy liver)

ALA 100mg

And activated carbon before bed to absorb the candida die-off.

 

Uff! What can be clearly seen from the above is that another our problem is… money! The tests, all the supplements, especially those that have to be ordered from abroad….

 

But the really good news is that Staś is doing really well. Most of the time he’s virtually tic-free. It was worse when we went to the sea and found it really hard to keep the diet. You could almost immediately see what impact it had on tics. Next week we are going canoeing and will see…

Once again I want to say what a wonderful place this board is. Only last Friday I felt so overwhelmed with all those new supplements we have to take, those shots, so many things that we have to order from the USA, all the expenses…and then I read Cheri’s words for KGeorge “Stop, deep breath, relax”. That was what I needed!

 

And I also want to say that I initiated the discussion about this natural approach to tics on the Polish board and slowly, slowly some people are starting to take some steps (eliminating sugar and artificial stuff, looking closely at allergies, seeing a DAN doctor – we have ONE (1) in Poland)

 

Irena

[Guest]

Hi Irena,

 

Glad Staś is doing so well. By the way MB12 don't have to sting. Which pharmacy do you get them from? I've got almost a year's worth from Hopewell Pharmacy and they don't sting for me. I tried Wellness and College Pharmacy and both of there's stung horribly. It would have been nice if they didn't sting as their two of the cheapest pharmacies to get MB12 from. If your not using Hopewell, I don't know if that's one you might want to check into, but I just wanted to mention that not all pharmacies have mb12 that stings. They also have numbing cream that people say helps.

 

Carolyn

[satu]

I'm happy, that Stas is doing so well and you have found a good doctor

 

Be well,

 

Satu

[kim]

Irena,

 

It's so nice to hear from you! I'm glad you were able to locate "THE" DAN.

 

Wanted to mention that some on the ASD solutions list, have said that they were able to maintain the positive results that they had with the MB12 injections, by using sublingual MB12. Others have said, the shots were superior. I think one of the advantages of the injections is to bypass an increase in gut problems. Carolyn could probably comment on that, if it's something you decide to try in the future.

 

I hope you keep us posted on Stas progress. I'm really interesed in the results you see with the Candida Clear too.

 

It's wonderful that you are sharing your experience with the Polish bd.

 

When your supplements start rolling in with the payment expected, just remember Chemars words. Stop, drop and roll....oh no, that's if you're on fire, sorry.

 

“Stop, deep breath, relax”.

 

There we go.

 

Kim

[Chemar]

When your supplements start rolling in with the payment expected, just remember Chemars words. Stop, drop and roll....oh no, that's if you're on fire, sorry.

 

“Stop, deep breath, relax”.

 

There we go.

 

 

 

oh Kim...what a good giggle you gave me this morning!

 

 

 

Irena

I agree it it so good to hear your update!

I am trying to locate an archived post on BrainTalk from Bonnie Grimaldi on which amino acids people with TS should avoid...the tyrosine was one, being a dopamine precursor.

BrainTalk has had a major crash and i dont know when it will be back up again, so will try to get that info when I can

you could also try to email Bonnie as she really is very knowledgable about all this........her website is www.BonnieGr.com and her email is BonnieGr@aol.com

[Irena]

Thank you all!

 

My Internet connection crashed for three days!

 

I've decided to stop tyrosine and introduced taurine back. I haven't discussed it with our doctor, yet, but I will.

 

Apart from Fluconazole (an antifungal medicine) we are also using Candida Clear, two capsules twice a day, as recommended for adults (Staś is 11). I was prepared that his tics would get much worse (by the way, saying in my last post that he's "virtually tic-free" was a bit too euphoric; let's say he's tic free to an unarmed eye). It's been almost six days and they are not worse. I don't know what to think. Is the treatment effective? Does it always have to get worse? I keep reminding him of drinking a lot of water, he takes Epsom Salts baths twice a week (talking about money - I paid over 32$ for 4kg of Epsom Salt!!!) and this activated carbon capsules to absorb toxins...

 

As for MB12 shots, I will order them when we come back from canoeing as I don't want to take a risk of having to leave before they arrive. I will order them from Lee Silsby Pharmacy. They have an internet store, "Our Kids", specialising in supps for autistic children , www.ourkidsasd.com. A syringe is $4.50. I can only hope theirs' don't sting because I don't have a choice. Not every pharmacy accepts foreign prescriptions, not every one sends the MB12 overseas. They need to be kept in a cool container while shipping. I hope the customs procedures will not take too long.

 

Irena