SSS
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Okay, WOW.
I have responded to many of your posts on the Lyme forum, with my experience and trying to help.
I understand you are not feeling well right now-
I get it.
What I was really trying to say was you do have many positives-
Good Luck.
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Sorry if it offends you but I don't think its offensive at all. If one day my pandas got so horrific and there was nothing any doctor could do....I would say yeah put me somewhere because with my immunebsystem attacking my Braun...I'm not exactly safe am I...no
*I'm sorry, I probably shouldn't even post on this thread, but if we are talking about *luck* I think you have been incredibly fortunate to come from an income bracket that has allowed you to try all the different healing options you have been trying- from the top hospitals your parents took you to as a child, over and over again as you have referred to, TSO trials, top homeopathy trial, the brain massage, etc, etc.
The families with the *bad luck*, the ones that I pity, are the ones (and how many? A LOT, I bet) that cannot afford the top 10 pandas doctors, and hit a brick wall with insurance Dr.'s, and lastly, never even know what pandas or infectious neuro issues really are, and talk about a family/children suffering.
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It depends on what food issues are present, and why you are taking them out-
for instance, if you have celiac disease, no, you can never go back to eating gluten.
If you have an IgE allergy, no, can't have the food.
If you have a leaky gut or food intolerance, and remove gluten, because it is causing an opiate effect and high inflammation, it is wise to heal that leaky gut first, and it takes time, and abstaining 100%, before going back to gluten, or dairy.
Sugar is wise to avoid if on antibitoics, or have yeast issues.
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Me, with my daughter. When she was just 4, I figured out she has a leaky gut. Put her on gluten free, casien free diet, she become 'clearer' (and looking back, I believe it reduced inflammation) and starting eating proteins- her whole diet/nutrition improved. When you have a leaky gut, you don't aborb the nutrients from food well- and there is yeast overgrowth. So I supplemented vitamins, minerals, and did naturals to help stave off the yeast, started giving high quality probiotics- I did this for 2 years +
My daughter has only been on antibiotics for the last 10 months.
As far as heavy metals, I have done short chelation protocols, however, the last one (5 weekends of DMSA) it released bacteria, strep and others, and that is when we came to pandas.
Many Dr.'s (both our DAN and now LLMD) feel it is wise to get the bacteria load down first (in our case, Lyme now) before going after the heavy metals- so, in another year, I will retest to see where her heavy metal load is at, because things we are doing now to treat her immune system may also be chelating some out, and if there is still a presence, then we will go back to chelation.
HTH.
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I am on 400 mg a day and weigh 104 pounds-
I think it goes by weight.
Are you doing anything for detox, like binders, Epsom salt baths or cream,
exercise in moderation, lots of water drinking...
My son weighs 120 lbs., so I guess the dose is right. Do you take it twice a day? My son does (two 1000 mg. pills, twice a day). I read that a split dose gives more absorption and can therefore cause more herxing.
For detox, we are only doing extra water and high dose vitamin C (3000 mg., but I may increase to bowel tolerance), and curcumin. Probably should look more into this, and I will if symptoms remain. My son also takes ImmunoProbio probiotic (2 per day), enzymes, D-3, Nutrient 950 and Total Omega for KPU, carcinocin (homeopathic remedy)
His herxing isn't that bad. Just hard to watch because herxing for him means increased OCD. It's hard to watch him go backwards.
**Hi, yes, I am taking it 2x a day, along w/Biaxin and Nystatin (for possible yeast) it makes me have unpleasant nausea, so I take it in the middle of breakfast, middle of dinner. But I have nausea frequently.
I see w/my dd (who is not on doxy because of age, but others for lyme/bart) we have days where the OCD comes back, and other symptoms she deals with- I have noticed on the nights before bed when I give her a binder, like a Bentonite capsule, or we also have Cholestyramine powder, the next day seems better. I also have to make sure her bowels are moving, to get the crud out.
We also have some remedies for detox, I am using Burbur for myself, and we have Antitox Gentle Drainage, and Itires for lymph drainage, I take a hot epsom salt bath at night, sweat. I rub epsom salt cream on dd.
Fun times, eh? ;-)
I tell myself, this is just a passage/ time in our lives right now--- not forever.
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My son started doxycycline last Tuesday night and had began "herxing" Thursday morning. Does anyone have any thoughts concerning how long the "herx" might last before we see improvement? I was also wondering if 400 mg. is the normal dosage. It seemed a little high to me. My son is 16.
*I'm sorry, I can't answer the herxing, I am on many things, and can't tell what is causing what-
but as far as the dose, I am on 400 mg a day and weigh 104 pounds-
I think it goes by weight.
Are you doing anything for detox, like binders, Epsom salt baths or cream,
exercise in moderation, lots of water drinking...
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I just wanted to add your daughter sounds so much like mine- the verbal 'swearing' and name calling that can't be controlled, the obsessions/OCD can't turn my mind off
and aggression towards her little sister.
AND, acts completely different in school- gets good grades, excellent behavior.
There is anxiety at school, but at home, it is such a different story.
You've gotten great advice already, hoping you get some good help soon-
I know it is hard.
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I'm sorry, in thinking about my response, I realized I didn't answer at all what you were really asking.
If we had no money left, no money to see an LLMD, and knew we had this chronic Lyme disease, yes, I would probably buy the Buhner book, buy the herbs he outlines, and go with this method, I can see where this would be very cost effective. Herbs are also available on the internet for parasite protocols, etc. The Buhner book spells it all out, to my understanding of the book, he does not treat others himself.
However, for us, Lyme has completely undermined our immune systems, with some lovely genetic factors to boot.
Some deep bacterial infections of strep, Lyme, Bartonella, probably babesiosis, parasites, high viruses, heavy metals (in my daughter) and let's see...oh yes, mold.
So while we can afford it, God willing, we go to a trained Dr. who can deal with all of these issues, in the correct order, and continue testing throughout to see progress, what is next, to heal the body. Someone with vast experience, and is up to date on the Lyme world (and currently at the Lyme conference.) And has had success with patients just like us, with all the same issues.
If I had the money to work with a master herbalist, not sure it would be any less money than working with an LLMD.
I did research various herbal protocols for Lyme. Cowden protocol- don't think I ever read of anyone who did just this and was completely healed with lasting remission.
I did love the idea tho of the 6 months condensed treatment, and being done. But that is not in the cards for us- much more complicated than that, and I suspect for other chronic lyme people.
I have heard good things about the Buhner and Zhang protocols, using Chinese herbs, or herbs only, for getting some progress.
And again, if this was my last resort, you bet that is what we'd be doing. And maybe it will be what we try if in 2 years we are out of money and not healed adequately, haven't eraditcated well enough all the Lyme bacteria infections. I did spend 2 years treating my daughter on my own with all naturals/herbs, no antibx., pulling my own tests. None of it stuck or lasted, although I do think we did make some progress, just not near remission/back to 100%, or lasting.
Of course, didn't know about the Lyme then, either.
Are you thinking of this for someone you know of with lyme, or just curious?
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Has anyone here strictly followed a Chinese herbal protocol for Lyme disease? Not just bought random herbs but really worked with someone who specislizes in herbal medicine?
I believe most LLMD's (at least ours is, and more from what I hear) at this point ARE using herbs- there have been some excellent herbal tinctures, as well as research, come into play in the treatment of Lyme.
We are doing herbs (twice a day, 4 different remedies, plus I am on OLE and curcumin)
It is exhausting :-/
We are combining the herbals with an antibiotic protocol.
And of course, there are the well known/well respected books out by herbalists on treating Lyme disease.
So yeah, I would venture to say most of us have heard of it, once getting into Lyme and treatment.
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Mom-me:
Your story and how you wrote it out is VERY powerful. It brought me to tears.
I may have this next part mixed up (sorry) but either the pandas network, or Beth Maloney from Saving Sammy is looking for parents stories on PANDAS- you need to send yours in-
God bless--
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My DS8 had selective mutism near the beginning of our PANDAS journey, at the ages of 3-4. He refused to speak at all outside of our home. His kindergarden teacher had to do his mid-year assessment by charades and pointing to multiple choice written answers because she had never heard him speak. The SM improved significantly after 1 year, but still came up from time to time. Now at age 8 he will only occassionally refuse to talk to someone new, or to someone familiar if the conversation is uncomfortable (like at therapy sessions). He knows a response is required, so he grunts or hums instead of answering, which I suppose is better than mutism (???). I believe for DS the mutism was anxiety-based rather than OCD, although he has both. Your description of your DD's mutism sounds more like an OCD issue to me, but that's just my opinion.
DS8 has PANDAS (chronically elevated ASO titres, CamK 176, anti-dopamine 1 four times higher than normal and obvious severe exacerbations with strep infections), and Lyme (IgM and IgG positive), and possibly bartonella (just based on clinical symptoms).
**Yes, the selective mutism is really interesting- our biggest WOW from pandas treatment, that very first month we put her on daily Azith., we could not BELIEVE how different she was socially- she spoke first to her friends at school, her K teacher pulled me aside and said she totally blossomed out, etc. etc.
That didn't last with Azith. only, but I saw it again with our new antibx. protocol we started 4 weeks ago for her-
and it is really weird with SM when someone pulls you aside (like a parent who works in a classroom) and says: 'I CANNOT believe how much your dd talked to me today! Never heard her open up like that! It was great!'
She still has trouble saying 'hello' and 'goodbye' to people-
But it is tremendously better.
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Ditto on the with food- that is what my Dr. told me to do-
I am also on 400 mg a day, and it gave me bad nausea- I read somewhere to take it halfway through a meal-
so if he has trouble, you could also try that.
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Hi.
Here is a glutathione blood test from Great Plains Laboratory (whom I've used in the past, and like as a company)
http://www.greatplainslaboratory.com/home/eng/glutathione.asp
DD and I have not had the Glutathione test done, however, given our immune system status (not good!) we are both taking
RediSorb Liposomal Glutathione
it is a liquid, unpleasant tasting, but we each take 1 tsp. every morning, mixed in a little strong juice.
HTH.
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Wilma, I'm sorry it is so hard right now- hang in there. I have mentioned before to you about your daughters 'gut' issues- for some reason, this always comes to my mind again when you post- do you think her clostrida has cleared? Have you been able to get any probiotics into her? Sending PV's----- and hope you are feeling better, too.
I also want to add:
The blanket statement that Dr. Klinghardt and Dr. J are the only LLMD's that really 'cure' these infections in children struck me the wrong way-
Many of us are using excellent LLMD's besides these 2- and are paying hard earned money, trust their LLMD, and believe they are capable, and are seeing results and healing.
The LLMD we are working with does in fact advocate detoxing and makes it an imperative part of our journey, and also 'holistic' drainage and body care for the individual going through treatment- and he has treated children successfully-
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There is also a disorder called 'selective mutism' my dd had it when she was 3 years old- child can speak very well, but in situations with other people, cannot speak/will not speak, will whisper to a parent instead to convey the message, or simply freeze, etc.
It is an anxiety based disorder- it left us when my daughter was around 4- but slightly creeps up from time to time.
But, just objectively, the situation you described, since you said she was still communicating but it was very disturbing what she was trying to say, and to watch, sounds like a really bad panic attack in an OCD fear based nature.
I'm sorry-I know how hard that is to watch.
Not sure where you are in treatment, but sending you and your daughter PV's for some healing-
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Well, I think of course it is a personal choice- I did not know LLMD's
were recommending against it- and I know people can really love their pets.
We have never owned pets here. I now refuse to get one- either a cat or a dog.
I think stray cats I used to feed got me into this mess, either partway or all the way,
and no way do I want a pet, no way will I hike in the woods again, and now I prefer to walk on the street rather than the sidewalks.
May sound dramatic, but this illness is horrible. I passed it to my daughter.
I am hoping we both come back from it.
So no. I tell my kids I'm sorry, but no pets.
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That is a good question- not sure of the actual cost savings, depends on your Doc, I think.
I was impatient, and ordered the test on my own without my Dr. (didn't want to wait until our next phone consultation, this is when I was working w/our previous treating Dr.)
Anyway, when I sent over to our Dr. the test results, he told me he could have ordered the test for me and saved me some money.
I do think it is an excellent test- to get a print out of what herbs, antifungal prescript. and antibx prescript. work best for the individual, plus I learned a thing or 2 I had no idea was going on---
Not very fun to send back to the lab, tho :-/ (Eww, that was rough. But, other stool tests make you collect and send it 3 different samples- this one comes with 3 different test tubes with chemicals, you go off of 1 sample. I did pull my dd off all supplements for the 3 days ahead of time required.)
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Where do you go to get the tests?
Here is direct information about the test- from here, a Dr. has to order it-
http://www.metametrix.com/test-menu/profiles/gastrointestinal-function/dna-stool-analysis-gi-effects
If you would like to get the test done without a Dr.'s signature, have the kit sent to you directly, you send it back, results sent to you- you may order it here, for a higher cost:
https://www.mymedlab.com/autism/gi-effects-complete-stool-mmx2100
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Yeah!! Noticed you had gone silent and figured you were stressing from the testing. So glad you can cross this one off your worry list and "Only" worry about all the other stuff!
How are you and DD feeling these days?
**Thanks LLM, for asking- I personally hit a patch where I have not been feeling well- nausea, etc. Hanging in there, dd, too- S.
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and it is okay! We had a thourough home inspection after our Dr. indicated that mold looked like an issue from our testing, and
we did find in our garage the built box that our water heater stands on completely molded, a leak happened at some point, and it is right where I park my car-we never noticed it.
But, all our house air samples came back clean, and the woman on the phone actually said to me: Some of the cleanest I've ever seen, I don't know what you are doing, but keep doing it.
(Ha! I don't know what I'm doing.)
Anyway, I am so relieved. The garage fix done correctly by the mold people is $1,500. (He quoted me 2k but I think felt sorry for me, I was a 'little' uptight during inspection) I also sent in the HLA test for dd- not cheap. I know this could have been much worse. Thank goodness. And we got some good tips on how to take care of/look out for things in our house-
Boy, how sensitive our bodies are- to and from our garage and we collected the junk...*sigh*
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My dd has tested with 1 defective gene in the Meth. pathway.
I believe we are one of the rare people this has happened to, but quick mention-
we have tried to supplement her with B-12, in both the hydrox. and meth. form- both were horrific for her-
I would introduce, get rages and crazy hyper- pull, back to normal, try again, and again, same thing, and yes we balanced it out with folic, etc.
We did the subling. and also tried the nasal spray, and then tried a drop on the tongue, all same response.
We are supplementing her with B-complex, folacal, and 2.5 mg folic acid right now, this is okay.
Separate B-12 in any form was NOT for us, despite our semi-defective pathway.
It can be a beautiful thing for some people though, hope that is your experience!
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My phone just ate a reply I typed, hope this doesn't show up twice.
We had a yeast issue starting 3 years ago, when I figured out my dd had a leaky gut, which I treated for a long time with diet change, GF/CF, nutrition, supplements, and natural herbs. No prescriptions until a year ago...No antibx. I would pull OAT tests from GP Lab. and it would show yeast, strains known.
Our Metx. test did show a lot of good bacteria (probiotics) that have lined her gut and stuck- and yet this high yeast can still be present.
Ours came back 'parasites present, unknown' and couldn't name them, which I hear is common. I think these are important to treat...Dr. agrees for sure, we are treating.
On the mold, I am no expert. My own testing, which was the clear postive lyme and bartonella, C4a came back sky high- even if the lab was running high, mine was outta sight.
Dr. said could be my chronic lyme, or mold, HLA test can show us?
Now, my dd, who has had massive blood, urine, and some hair testing, had some recent non-evasive testing (which I would rather not explain) which indicated mold as a big issue for her--- so her and I are treating with the Questran powder, she is going to get the HLA gene test, which will determine more for us.
The house came back very good/fine- the garage has an issue, under the water heater/stand, which we now will pay for to have it replaced/mold effectively eradicated all around it.
We did an air test to see if it is coming in the house, either way, we are fixing it.
As to the mold foods----I don't know.
Honestly, I am so overwhelmed, and so done with the money spending (I am sure you can relate.) I don't want to learn more about it on my own at this point.
Please do share what you find out, thank you.
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Sorry, so long, I forgot 1 thing. We are also doing a parasite protocol-
Albenza and Stromectol 1 week on, 2 weeks off, repeat.
Good herbs available for parasite treatment, too (Humaworm)
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Hi, we had this same test run in August. I was very pleased we didn't have terrible bacteria showing, like
kleis., clostridia, and strep in the gut.
However, what I was really looking forward to, what is awesome about this test, is that it has
a DNA component that will tell you what herbs and antibiotics, anti-fungals will fight the type of infection that is showing for that person.
So, when I also got back on dd yeast+4 (highest possible) but said:
Unknown (and then it said: possible mold) With no listing of what could fight it,
my heart sank. All the anti-fungals we had tried. I've known yeast has been an issue.
So, mold is a possible issue for us, other tests pointing to it, as well.
Just had our house inspected, on cholestyramine, etc.
Not saying this is your case! I am interested to hear what your Dr. says....
We did a round of Itraconazole, which is an (the only?) anti-fungal that may hit mold, now on
Byron White A-FNG (herb anti-fungal) and Amphotercin B.
If what you posted are the only things that came up, I'd say your looking pretty good except the yeast issue-
you may also get a recommendation for a digestive enzyme.
Sounds like all your good bacteria is there, that's great.
Did anyone's child develop autism after PANDAS?
in PANS / PANDAS (Lyme included)
Posted
And by the way pandas16, I have lyme, bartonella, bab, chyl. pneumonia and mold issues.
Let's not tit for tat.
And I have no idea, either, if I have permanent brain damage.
But we can't sit and pity party ourselves. Look around. There are many things to be thankful for.
And their are millions of people worse off than we are-