Allie
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Posts posted by Allie
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Have you considered Alinia for the C- diff?
What about using other Probiotics instead of the Culturelle too?
Vitamin C , Magnesium, Castor oil cap, together to move bowels? Even Castor oil Packs on the Stomach area with a heating pad
for 20 mins, before bedtime.
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There is also Calms Forte, by Hylands. Its a homeopathic remedy not too expensive, found in healthfood stores. Follow directions on the box
can be used every day, no side effects or issues with daily use.
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Yes, many of our kids really lyme induced autism/ ADD/ADHD, etc.. And with the vaccines that really throws them over the cliff.
Change in diet can help, treating the parasites, as well as bio film for the gut treatment. Some even use digestive enzymes and that really helps
too.
This is mult. layers and it will take time, patience, probably not going to school is a good idea right now, that may already have happened.
Pouring heavy drugs down our kids doesn't work, too many systems are a mess and don't even process correctly.
Some naturals can be used to help along the way too. I don't even want to estimate a time that this could take to clear up, each child is different.
You may want to get a "Earthing pad " to put on the bed, to help healing too. Think there is even a bio mat thats out, but not sure what its
called.
Get all the support you can get to help. Also have you been tested for any lyme coinfections? Or anyone else in the house?
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I wanted to just mention that if you son has had vaccines, the Tumeric/curcumin is still very helpful regarding the viral issues
from vaccines.
You may want to watch DR Tent on You tube, its a long video but very informative.
Sorry I don't know enough about MAO-A off the top of my head
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You can also use Alinia for C- diff ~ by prescription - not cheap if your insurance does not cover it. Easier than taking Vacomycin, as its not so hard on their systems.
FLorostar can cause behaviors in some kids. A good Probiotic high powered without strep in it, also needed.
But you do need to keep the Bowels moving, like mentioned already.
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The IVIG will help support her immune system.
I guessing your doing lots of High powered Probiotics while doing the antibx currently? What about Alinia, have you ever used that ?
The antibx's you are currently using may not be what she needs for her lyme disease, so thats a coin toss.
What happens if you stop them? Does she get worse?
She needs supportive supplements, Magnesium several times a day. What other supplements are you using?
Acai is a good antiox to use several times a day. Elytrolyte water to drink as well during the day, sodium levels/ potasiumm all needs
to be kept up in normal ranges.
What are her Vitamin D3 levels? Those numbers need to be in the higher normal range.
Need to probably go Gluten Free with the Lyme disease, and No GMO foods! Get off Milk products too.
Can you start doing some smoothies, juicing raw friuts and veggies, its really important with lyme to get the good
enzymes. I would also encourage doing digestive enzymes with all meals, as her bio film is probably already in need of help
being on antibxs.
For OCD, what about using IP6 Inosine? Niacine too? ( I don't know the dosage for Niacine but it helps OCD a lot).
IP6 needs to be gradually added in over the course of ten days or so. Start at 500 mgs in morning, 3-4 days then add 500mgs at bedtime
then add 500 mgs at lunch time after a few days on it, and the max per day is 2,000 mgs.
You could also get a homeopathic remedy called Calms forte by Hylands - its not expensive and give it to her 15 mins away from food
before or after. Sometimes you need 3-4 tablets at a time. They can be crushed and added to water. No side effects or harmful affects taking this sometimes or all the time. All this can be found at the healthfood store
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Antibx's can cause sleep issues.
Are you also giving Probiotics - high powered ones? And also added Magnesium? Antibx's lower Magnesium levels.
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GcMAF has been seen to help in both autism and Lymes/CFS/ME type ailments. Google Dr Bradstreet for information on his treatment of autism using GcMAF where almost 80% of the children in his care have responded positively.
IF you can have your child tested for Methlyation problems, this makes everything much easier to treat, and the body will kick in to help heal faster.
( wished I had known this years ago, would have saved my child from so much distress, and lost years.). Treating for yeast is tricky if you use Duflcan some kids have a hard time with it, due to their geno mapping and methlyation markers.
Here is a list to help you find someone in your state, or close to you.
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Anymore I think anyone and everyone in the USA could have Lyme disease/ co infections.
Its how healthy your immune system is.
The Vaccines for sure throw your child over the cliff if they were born with lyme disease. Its just too much for their systems to handle and all the toxic metals, viruses
just wreck havoc on their tiny systems, and undeveloped Neuro system.
I have heard that staff working in a Lyme DR's office, were all without any symptoms of Lyme, within months of working in the office around
all the lyme pts coming in, they developed lyme too. The DR felt like its even airbourne!
It can be passed through not only sexual contact probably less rare but salvia, and tears as well.
So give yourself a break and leave guilt at the door about who could have passed it on to the babies, and center your life on the healing.
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The pt's sick with Lyme and co infections are much sicker in the USA than they are in other countries.
I have heard this spoken by some of the top DR's on this subject and it has to be a combination of the two punch
Plum Island and the Vaccines. I would go so much to add, our diets here in the USA; way too much fast food, Chem Trails, Chem spraying, Elec smog, cell phones, etc...
At least in some other countries they have banned Monsanto from taking over their seed for crops.
Some states have already passed laws that all food must be labeled if its GMO ~ VT? maybe, CA next?
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What about either of these DR's in CT, DR J who knows lyme/ PANDAS very well
Or DR C. who is wonderful and uses combinations of homeopathic's, herbs, antibx's and more. I have heard her speak many times, and think this DR is really on top of it.
Also has a son who was very sick with lyme and he is well now. This DR can also do Skype!
*Seen DR K, in WA. Has some good things, but is not available after your appt for phone calls, that to me is a big issue for follow up care.
I don't know any parent who has gone to him, who has been cured of whatever he was treating them for. Maybe made some improvements.
He's big on giving the same protocol use for all patients, so it was sounding to me like a cookie cutter treatment plan.
You can google him and find his protocols online if interested.
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Our son has lyme and co-infections and has been treated for 2.5 yrs with minimal success. He has several sx, but one sx, belching, has been getting worse over the last few months. I know that this can be a sx of lyme or general GI issues but I am wondering if any of you have seen this sx spike and what you have used to help reduce it. One potential reason for the increase is our start of biofilm protocols 5 months ago. I guess it's possible that breaking down the biofilm could release more bad bugs which can cause GI sx.
Any thoughts or experiences are appreciated. Thanks, John L
Not sure why the bubbling with belching. Yeast maybe? Can you discuss with the DR about this?
Are you still doing the biofilm protocol ( for 5 months?).
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The oat test was thru Great Plains and the stool test was Doctors Data both kits were ordered by the dr. We tried Amphotericin but the liquid tastes like paint. Really awful. We are sticking it out with Nystatin and also removing sugar. No more GFCF french toast as that seems to be a trigger after eating.
SF mom I did not know yeast can be contagious. That is scary.
I'm so stressed with his health, the treatments are now part of the problem.
Thanks everyone for all the suggestions we are doing most of them except homeopathy I will research some on homeopathy but I don't have a doc for that.
My DD is taking Tindamax, Amphotericin B, GSE, and SBC for C-Diff and it seems to be helping. We had to switch from Diflucan to Amphotericin B a couple of years ago due to elevated liver functions.
Sorry - I seem to have lots of questions today. What is SBC? Who's OAT test did you run, and which specific test? Thanks so much.
You can use Alinia for C- diff and lots of Probiotics. I probably would take a break from the antibx's to clear this up and regain some balance. Alinia can be pricey, you may want to contact a Pharmacy in Canada - run a google for one. If your insurance won't cover it. Probably a few months could help. Used to be they cost $1.50 a pill ( which you could crush and add to yogurt. You might want to use some liver support as well, Milk Thistle herb.
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I have heard from the Lyme DR if your on antibx's you need to take extra Magnesium as it gets depleted while taking antibx's.
What about the topical magnesium oil, some use it and apply it after bathing when the skin is still damp. There some thinking that lyme eats up the magnesium if taken
orally.
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My son was doing this a lot this year, off and on. It was not OCD or a Tic. It was under his breath per sa. I was concerned, because then they can get acid erosion from this constant burping/belching. I keep looking at the diet issues too. One thing is I cut down on sugary juices, as he seemed to be drinking a lot of it. So when he does get juice its cut 50- 50 with water. And I suspect it could have been yeast or parasites. I have him on Alinia and it maybe the one thing that has helped the belching. Thats the trouble when your doing so many things, you don't know what stopped the issue.
So those are 3 things to consider, is it diet, yeast or Parasites.
Could this be a motor or vocal tic? Does he have any other OCD or ticcing symptoms? Have you asked him if he has any preminatory sensations preceeding the burp? Is it suggestible, meaning if you mention burping, does he then have to burp?
Being on abx, you are supplementing with probiotics to help prevent overgrowth of problematic bacteria?
He does have some OCD, and maybe that is part of it, but the core issue really looks like a GI issue of some type. I say this because (sorry) it sounds like bubbles coming from the stomach and is odoress (sorry again).
As far as asking him, well he is minimally verbal with asd, so that is out. We do talk to him and ask him questions, but that is after he starts belching.
So, it is tought to figure things out when you can't communicate with him. That's why I am trying to see if others have dealt with this sx. Thanks for your insight. John L
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My son was doing this a lot this year, off and on. It was not OCD or a Tic. It was under his breath per sa. I was concerned, because then they can get acid erosion from this constant burping/belching. I keep looking at the diet issues too. One thing is I cut down on sugary juices, as he seemed to be drinking a lot of it. So when he does get juice its cut 50- 50 with water. And I suspect it could have been yeast or parasites. I have him on Alinia and it maybe the one thing that has helped the belching. Thats the trouble when your doing so many things, you don't know what stopped the issue.
So those are 3 things to consider, is it diet, yeast or Parasites.
Could this be a motor or vocal tic? Does he have any other OCD or ticcing symptoms? Have you asked him if he has any preminatory sensations preceeding the burp? Is it suggestible, meaning if you mention burping, does he then have to burp?
Being on abx, you are supplementing with probiotics to help prevent overgrowth of problematic bacteria?
He does have some OCD, and maybe that is part of it, but the core issue really looks like a GI issue of some type. I say this because (sorry) it sounds like bubbles coming from the stomach and is odoress (sorry again).
As far as asking him, well he is minimally verbal with asd, so that is out. We do talk to him and ask him questions, but that is after he starts belching.
So, it is tought to figure things out when you can't communicate with him. That's why I am trying to see if others have dealt with this sx. Thanks for your insight. John L
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You may want to check your Probioitc to see if it has any Strep in it too.
Never heard of it causing a sleep issue. What brand are you using?
Is your child on any antibx's? Zithromax keeps my son awake.
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Adding to all the great advise above, Liquids!! YES LOTS Take favorite play videos, games, etc. Its a long day.
Bendryl can also help the stomach, during the infusion time. And you can repeat it at bedtime again if needed. And it can help if your child gets congested during the
infusion ( sometimes they have to slow the rate of the infusion time down, as fluid can build up in the lungs. Just slow the rate of the infusion down).
I would say have a good meal before the start of the infusion and continue to have good foods on hand
to snack on.
I also like elytrolyte water, because seems like minerals get depleted during infusions. Seems like this helps my son out a lot.
Motrin with food at the start of the infusion, and would advise it around the clock for several days. Common side effects are headaches & stomach aches.
IF there seems to be some more issues going on, Activated Charcoal caps with Magnesium citrate caps ~ at bedtime away from all other medicines at least 2 hrs away.
This will asborb any serious die off issue.
Wishing good thoughts, all will go well.
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PR40
Have you looked at the links I provided above?
Here's the direct pages or you can call them and they will send you a packet.http:
//www.hhs.gov/ocr/civilrights/complaints/discrimhowtofile.pdf
I really think from what you mentioned, it sounds like you need to file a complaint against the DR, go to the Medical board in your state.
If there is more than that, your child was discriminated or maltreatments, refused treatment, than OCR below is your next step.
The other thing is it must be filed within 180 days since the event - leaving the hospital, or DR's office.
Also check out which region your in, each region seems to cover 4-10 states - so you need to contact your regional OCR office.
Regional Office Addresses
Region I - Boston (Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, Vermont)
Peter Chan, Regional Manager
Office for Civil Rights
U.S. Department of Health and Human Services
Government Center
J.F.Kennedy Federal Building - Room 1875
Boston, MA 02203
Voice phone (800) 368-1019
FAX (617) 565-3809
TDD (800) 537-7697
Region II - New York (New Jersey, New York, Puerto Rico, Virgin Islands)
Linda Colon, Regional Manager
Office for Civil Rights
U.S. Department of Health and Human Services
Jacob Javits Federal Building
26 Federal Plaza - Suite 3312
New York, NY 10278
Voice Phone (800) 368-1019
FAX (212) 264-3039
TDD (800) 537-7697
Region III - Philadelphia (Delaware, District of Columbia, Maryland, Pennsylvania, Virginia, West Virginia)
Barbara Holland, Regional Manager
Office for Civil Rights
U.S. Department of Health and Human Services
150 S. Independence Mall West
Suite 372, Public Ledger Building
Philadelphia, PA 19106-9111
Main Line (800) 368-1019
FAX (215) 861-4431
TDD (800) 537-7697
Region IV - Atlanta (Alabama, Florida, Georgia, Kentucky, Mississippi, North Carolina, South Carolina, Tennessee)
Roosevelt Freeman, Regional Manager
Office for Civil Rights
U.S. Department of Health and Human Services
Sam Nunn Atlanta Federal Center, Suite 16T70
61 Forsyth Street, S.W.
Atlanta, GA 30303-8909
Voice Phone (800) 368-1019
FAX (404) 562-7881
TDD (800) 537-7697
Region V - Chicago (Illinois, Indiana, Michigan, Minnesota, Ohio, Wisconsin)
Celeste Davis, Regional Manager
Office for Civil Rights
U.S. Department of Health and Human Services
233 N. Michigan Ave., Suite 240
Chicago, IL 60601
Voice Phone (800) 368-1019
FAX (312) 886-1807
TDD (800) 537-7697
Region VI - Dallas (Arkansas, Louisiana, New Mexico, Oklahoma, Texas)
Jorge Lozano, Regional Manager
Office for Civil Rights
U.S. Department of Health and Human Services
1301 Young Street, Suite 1169
Dallas, TX 75202
Voice Phone (800) 368-1019
FAX (214) 767-0432
TDD (800) 537-7697
Region VII - Kansas City (Iowa, Kansas, Missouri, Nebraska)
Frank Campbell, Regional Manager
Office for Civil Rights
U.S. Department of Health and Human Services
601 East 12th Street - Room 353
Kansas City, MO 64106
Voice Phone (800) 368-1019
FAX (816) 426-3686
TDD (800) 537-7697
Region VIII - Denver (Colorado, Montana, North Dakota, South Dakota, Utah, Wyoming)
Velveta Howell, Regional Manager
Office for Civil Rights
U.S. Department of Health and Human Services
999 18th Street, Suite 417
Denver, CO 80202
Voice Phone (800) 368-1019
FAX (303) 844-2025
TDD (800) 537-7697
Region IX - San Francisco (American Samoa, Arizona, California, Guam, Hawaii, Nevada)
Michael Leoz, Regional Manager
Office for Civil Rights
U.S. Department of Health and Human Services
90 7th Street, Suite 4-100
San Francisco, CA 94103
Voice Phone (800) 368-1019
FAX (415) 437-8329
TDD (800) 537-7697
Region X - Seattle (Alaska, Idaho, Oregon, Washington)
Linda Yuu Connor, Regional Manager
Office for Civil Rights
U.S. Department of Health and Human Services
2201 Sixth Avenue - M/S: RX-11
Seattle, WA 98121-1831
Voice Phone (800) 368-1019
FAX (206) 615-2297
TDD (800) 537-7697
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I did the 23andme test right when it was fresh on the market ( think it was priced $99.00) it was on a TV show.
I had done the Amy Yasko testing on my son, which was so much more
expensive, details. I still felt like I was treading water trying to understand the genetics.
Bought DVD's trying to learn it all. Turned out those DVD's helped me go to sleep fast watching them, I
realized what a great sleep aide they were.
Even though all these results may sound like it spells loads of troubles.
The good thing, is you can change the mapping through a good organic diet, sunlight, walking ( notice no heavy duty extremes).
Filtered water, some supplements,lots of rest and mindfulness living.
I have gone through so many things of cutting out, for the family and over time. And notice we don't miss them at all.
We're still working on things, but I see a glimmer of light, and not so many things to fix finally.
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Mastic gum and lots of Probiotics for H- Pylori
C- diff / Parasites ? Alinia can help.
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You can order Alinia from Canada - usually each tablet is $1.50 a tablet - it may take a while to get it, they sometimes order from India
Google Pharmacies in Canada
C- diff?? lots and lots of Probioitcs seriously. Your child needs the alinia to help clear this up, not the antibx.
Allie
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Has anyone treated Parasites with ( or heard of Alinia)? DD is allergic to Flagyl, so this was their next choice. She also has H Pylori. What would you treat first? I would think H Pylori. I don't know why... Anyway, I guess the usuall treatment is 3 days and the MD wants 14 days. Insurance with cover 3 days. Then it's $125/3day treatment after.
I (without MD advice)....I know shame on me...started her back on her Amoxicillin (since I had proof no C Diff) and also added in her Prevacid from her reflux days. This is the H Pylori treatment. I see a diminish (albeit slight....it's been 2 days) in OCD and anxiety. I was hoping to get a jump start on treatment...now they are treating Parasites first!! I don't want to tell him for fear of cutting me off. And I def don't want to stop any progression.. Any suggestions????
I tried calling Dr. T, but he is having a difficult time right now..
You may want to post on the lyme form about the Alinia. I know its been mentioned before. Maybes SF Mom??
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Oh this brings back big sad memories when all these drugs were thrown at my son. I hate to sound prescriptive but these drugs are going to make things worse if your child has Pandas/ lyme.
Seriously I would run from the DR's prescribing all that to my child from what I know now.
You know that Risperidol is a anti psychoic - and your child has celiac & lyme ?? Have you read the side effects of this
medication, please do the side effects can come on and you don't know what tics are from the medicine or the other health problems.
Really all these medications, you need to highlight all the side effects, to make sure they aren't having a side effect.
Amoxillicin won't hardly touch the lyme disease. How do you know if your child does not have C- diff from taking it so long? Have you been using high powered Probiotics? Yeast??
Did you mean hyper thyroidism or hypo thyroid?
And then the Celiac ? Are you doing the diet to a "T" ?? That can make a huge difference for your child's over all well being, as well as the thyroid issues. The Diet needs to be followed like you
would someone who is a diabetic, its serious!! And it can have an over all improvement on the child's well being, out look on life. But it takes up to a year to get the gluten out of all the organs.
The thyroid regulates hormones and so many systems in the body, it has to be supported.
If its hyper thyroidism, I so hope your with a good Endocrine DR, this is serious!! So is hypothyroidism which can turn into Hashimoto's - the autoimmune thryoid disorder, so relates to lyme disease.
My son 2 yrs ago, laned in the ER with hyper thyroidism, with so high of antibodies they could not read the results, off the charts, and was on a heart montior for 4 months! I had to take his blood pressure
for 2 months, every 4 hrs so I could dose the anti thyroid meds. He was almost motionless for 30 days. The DR's did not think he would make it.
PM me if you want more advice, I feel like I could write all night to you about all this. You need to see top specialist for all these things you mentioned. Celiac alone is super serious, as is the thyroid issue, and lyme.
they all affect the brain and how well you act and think. Seriously I feel awful for you and your child.
Allie
Mycoplasma treatment question
in PANS / PANDAS (Lyme included)
Posted
Glad your getting relief, enjoy the improvments!
Biaxan ( usually used for Mycoplasma ?)
You need to make sure she is moving her Bowels 2-3 times a day, Extra Vit C, Magnesium, High dose Probiotics
Re check lab results once a month on the mycoplasma - sometimes it can take 2-4 months to clear up.
Lyme and PANDAS ~ seem to be both connected, treating one thing at a time. The OCD, you may want to use some supportive
supplements, like IP6 Inositol , there are others that help too, a little 5 HTP - daily to help with moods, Pro EFA's, etc..