"Intravenous Immunoglobulin (IVIg) is a solution of highly purified immunoglobulin G, derived from large pools of human plasma that contain antibodies against a broad spectrum of bacterial and viral agents. This solution is delivered intravenously and is used primarily to treat three categories of illnesses: immunodeficiencies, autoimmune neuromuscular disorders, and certain rheumatologic conditions."
IVIG is VERY expensive and very rarely covered entirely by insurance. I have heard that out of pocket quotes often exceed $5000 even for those who HAVE insurance coverage for some of it! And most people require IVIG multiple times. Sure makes the camel milk look cheap, doesn't it?
Camel milk is anti-bacterial and anti-viral. It's a wonder why we get such great results when you combine all these traits in one power packed serving! It MUST be raw to get these benefits!
Speaking of results....lets talk about my kids. We've been on the camel milk for 24 days as of today. We were originally only using half of the recommended dose with each child daily and seeing a wide variety of improvements. I want to know it's full potential though, so we are increasing. I started increasing two days ago and we are now on a pint and a half a day, between the two of them. Two pints would be about the recommended dose, give or take a few ounces. It certainly isn't hard to get in them, they love it! Yeay for that! I don't have to squirt it, pop it open, mix it or pour it into them!! And they enjoy it, something I gain pleasure in! Our kids are troopers, they take concoctions of the nastiest tasting stuff on earth without a flinch! So a treatment they love?! Sign me up!!
I just can't get over the changes with Grayson! If you read my earlier entries about his aggression, his tics, his negativity, his inconsistencies.....itching, head swattting, bloating, sleep disturbances, severely emotional outbursts, my goodness, life was never dull around here!! He was so volatile I wouldn't even sign him up for activities. I was literally afraid of his behaviors, would he tantrum and cry uncontrollably, because he doesn't want to do something; would he freak out from lack of confidence; would he just completely resist participation? We tried a few things like soccer and ice skating. He zoned out on the field in soccer and he refused participation with ice skating. I gave up and I am not a giving up sort of mom, but he had my endurance beat, I just couldn't fight another fight, nor was it healthy.
Fast forward to today, these are the traits I see in Grayson on a CONSISTENT basis now and yes, this is SINCE the milk!!
- Amazing confidence! He will try anything and although he hates failure (not a bad thing) he isnt' freaking out or hitting himself in the head over it. He picks himself up (figruatively speaking) dusts himself off and moves on.
- We've signed him up for guitar lessons and I am so impressed with him! He is learning very fast, he is willing to attempt anything we ask him to try, he doesn't fight me when I ask him to practice (although it's in short spurts, lol, hey whatever works). He is willing to "perform" the things he learns without hesitation.
- He is happy every day, VERY happy and not the overly giddy kind of yeasty happiness, but a real genuine happiness. Coming from the deep, dark caves of anger that Clostridia brings, this is a HUGE and very welcome change. There was nothing worse than watching our 5 year old wake up angry at the world, his pajamas too tight, clothes bothering him, shoes won't go on right, chair isn't even, everything was too something and the reaction was far beyond extreme, it was frightening. I am so so so SO relieved to see this change so consistently!
- He's interested in playing with Gavin who has a very challenging personality, but he makes it work most days lately. There is often a lot of fighting, because Grayson is so controlling, but he has been slowly opening up to listening to Gavin (when I request him to do so). In the past, he would stomp off, crossing his arms, yelling that he wanted to "be alone". Now he is listening to me calmly and trying whatever I suggest. Wow!
- Compliance!!
- His flexibility is amazing. We haven't had any issues with transition at all.
- Consistency - did I mention this AGAIN? HAHAHA In the past we have called him Jekyll and Hyde, because from one moment to the next, he would flip from happy to emotional, then angry, then giddy (too happy), it was an exhausting roller coaster ride to parent him. He's consistent, he's happy, he's flexible and compliant. This is what normal is all about!!
Gavin is flourishing too, as you have probably read in previous entries about the camel milk. He's just a fire cracker! He's affectionate and powerful at once. He's our little daredevil with control, loves to make people laugh, but is a lovey too. He's kept all of his gains, but I notice that with him, when I increase the milk, we get a period of what resembles die-off. His stools change, his temperament becomes less tolerant, and he becomes excessively hyper temporarily. I am taking this to mean that he needs the increase and that we will need to continue to increase until this subsides. Keep in mind that he has a virulent parasite and I am hoping the milk is doing something about that! I would expect some die-off with anything that could be working!
I can't wait to see what more camel milk brings!! If anyone reading this has been on the fence about camel milk, I give you a resounding "TRY IT!" Don't let this opportunity pass you by, you may never know what real healing is until you give it a shot! My husband and I are even considering using it for ourselves, if we decide to stop it for the kids (as in done healing). It's THAT phenomenal!
27 comments:
I am so glad to hear about this change for you...and that it has been consistent! I know how sometimes it's hard to hope for improvement, when you look for it everywhere it's easy to become optimistic and to fall down when it turns out not to last - it's such a great thing, getting to the step where you are now when you can say with confidence there HAS been improvement :-). Good for all of you!
Congratulations! I am so happy for you and your kids. They are so lucky to have you for a mom - and blessed that your research and work brought them to this point. Yay!
Best,
Marysue
Thank you Marysue!!
do you know of anyplace online i can buy camel milk?
or have you heard of any in massachusetts?
Unfortunately, I don't know of anywhere that sells online, although I know there is a farmer in Missouri who is shipping orders. His name is Sam Hostetter, I don't have his telephone number, but Millie Hinkle of CammelMilkUSA.com does. She welcomes phone calls to discuss the milk and to obtain farmer names. She may give you a closer farmer in PA, but he has a waiting list, so I would recommend specifically asking for Sam's number. I have to warn you though, it's about $250 to ship overnight!
thank you jessica! I really appreciate you sharing your knowledge:)
Man, camel milk sounds like powerful stuff, I need to figure out how to get some in FL. We are on a similar biomedical journey here with our two but you are WAY further along with getting everything figured out. I am impressed! We are loosely working with a DAN Dr but I have been playing Dr Google and am having a tough time with the trial and error. Do you guys work closely with a dr or are you figuring this puzzle out on your own? Thanks for all of the great info, it is nice to find someone going through similar stuff, even though I wish we didn't have to.
Casey,
We have had four doctors along the way, three DAN! and one homeopathic. In the beginning we consulted with Dr. Woeller for just about everything, plus we had a local DAN! to see for whatever he recommended. Once we got on the path we are on now and I had more confidence in what I was doing, I found that I needed them less and less. I never waited for them to make suggestions though, I am pretty much on top of all the natural treatments via my own research. I always give them the update when we see them, and they are satisfied with all that I do. I basically use them for testing now. With something like camel milk, which is a food, it's not necessary to involve a doctor, who hasn't even heard of it, although I do like to inform them of all the things we are doing.
Thanks Jessica, I will look into getting set up with Dr Woeller since he does Skype consultations. We have had some success with our DAN doctor but I have been the driving force behind most of the supplements the kids are on. We are at a low point since every time we think we are at a good baseline, something throws us off. I guess I just need help making sense of it all! We got our OAT test results back this week and the numbers are all over the place (which explains the regressions we've seen lately). Wouldn't it be nice if all doctors were experts in this stuff and we didn't have to play super sleuths to figure it out on our own? I guess I'm just venting at this point, ha!
Hi Jessica: Can children who are allergic to cow's milk (casein) drink camel's milk?
Yes Janice. Camel milk is nothing like cow's milk, they are not even in the same family and camel milk does not contain the beta-casein, which is what causes the opiate-effect with cow's milk. Allergies to camel milk are very rare.
Casey,
So far I have always felt like the driving force behind healing my children. We know our children best and we know when they are off and need something different. I have come to grips with the fact that this responsibility is mine....meaning, I've stopped looking for a doctor to do it for me. I'm content with this now. If we ever run into anything out of my ballpark, I know there are doctors out there I can bring them to, but for the day to day victories, that is all me and I am proud to wear that title! =)
Im just thrilled to come across your blog my accident..ive been wondering about camel milk for about a month now.. and then all the sudden the new autism file came out last week with a huge article in it. Please..may I ask how soon you saw positives on the milk? and do you still use it now? also..dr hinkle..does she have a fee to talk to her on the phone up front and do you know the cost? thank you so much for blogging on this subject..been googling around each day trying to get as much info as i can!!
Donna,
Have you joined our FB group yet? It's called Healing with Camel Milk. All the info you could need is there! Our results came immediately on the milk, but the more lasting results came over time. Our younger son responded quicker and more intensely, our older son took time to respond, he was more of a steady responder though. We are not on the milk right now, we want to test our kids for the folate receptor antibodies. They were on it for 9 months before we took a break though! =)
no...im not a FB member yet..i will look more now to see how to be..thank you so kindly for responding so quickly to my post!! i appreciate that so much... we actually just had that folate test done ourselves and got our labs tests back a few weeks ago..and so curious about the camel milk and if your still able to get it...the article in the autism file makes it sound like its not easy. Will you go back on it?
Yes, you can still get camel milk, in fact, there is more than enough right now, babies are being born, milk is increasing with the weather change, all is good!! There are a few great farmers to choose from. If we have no issues with folate receptor antibodies, you better believe we will go back on it!! The nutrition alone is well worth it. =)
Hi jessica,
dah..i realized FB later meant facebook...and i don't normally do that. When you said "if you don't have any folate deficiency's you will go back on the milk..does that mean you should not be on both at the same time? I do know your not sopose to be on any milk while going threw treatment for folate...cause we will be doing that actually..she was a low positive for blocking antibodies or something like that. Also is the camel farm you got yours from..one that abides by a Dr. Millie Hinkle standards? thank you!!
If your daughter is positive for blocking antibodies, I don't think she should be drinking any dairy, including camel milk, unfortunately. I'm sorry to be the bearer of bad news. =(
Hello Jessica! ahh... no thats ok...it just means that we have to do one or the other at a time is all. our doctor warned us that if we put her back on colostrum we can not do it while on that treatment but can when we are not on it. (we have not started the LEUCOVORIN trial yet) so glad i can keep that in mind. of course still 100% interested in the camel milk ALOT and don't know how you find a reputable place that is safe just from looking at a web site.
There is a LOT of talk about the FRA (folate receptor antibodies) issue on the HEaling with Camel Milk facebook group, you could do a search there and come up with a lot of information. Many of the parents are going through this right now. It is my understanding that a child who tests positive should not do any dairy though, whether a person is treating or not. I am also reading that some kids start out doing great on the Leucvorin, but then crash after a while. I don't know what the answer is though. It would be worth getting in on those conversations, if you are considering the milk and/or have the FRAs to take into account.
Jessica,
Thank you so much ..for your input!! Greatly appreciate it~ Will certainly look more into it. I do worry that we will yet again try something new like the Leucvorin, and then have the positives then go away..like other things.
Hi Jessica, Was wondering were you stood with the folate testing you were waiting on and if you thought you were gonna go back on the camel milk? We are very interested..still in trying camel milk at some point this summer..we just unsure how to figure out a safe place and how you go about it. FB is not so easy for me to get on to .. is there a way one might chat with you? or something? thanks again, Donna
Hi Shea,
We have not yet folate tested. We have many other costs prohibiting us from having this done anytime soon, so for the time being we are off the camel milk. I would like to use it again in the future though.
You can reach me via e-mail at luckylot@ptd.net. Look forward to hearing from you!
Are folate receptor antibodies a completely different condition than the MTHFR polymorphism that is associated with autism (among other things)? I guess I will have to look into it. So excited to find your blog, by-the-way. It's fabulous!
Yes, the FRAs are completely different from the MTHFR mutations. A person can have one without the other, but if a person is an MTHFR, I would be extra cautious about the possibility of the FRAs, because it's like having a double-whammy folate problem. B-12 deficiency is another issue associated with the MTHFR gene mutations, and it's well-known that many of our kids have problems processing B12. It tends to be high in their plasma (blood), but low in the cells. Is this because their cells are being occupied by oxalates, pathogens and other nasties...? I don't know, but it certainly makes some sense.
Thank you for reading!
Jessica
Hi,My son is 5 year old,has autism,now is it 1 week on the camel milk but I m not sure-I want ask you,how you give our child camel milk,cold or hot,you boil milk,please let me know thank you.
We never boiled the camel milk. We only gave it cold.
Jessica
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