tpotter

DH used methotrexate for a short time for RA, but it didn't work for him (because he actually has lyme, but won't quite admit it, despite actually testing postive CDC.) Unfortunately, I can't give you more info than that. But, wouldn't it be like suppressing the immune system with steroids? Is the methotrexate for arthritis, since it's a rheumatologist who is treating?

Is there testing for specific parasites? I'm sure we all have them (I've been using artecin by xymogen for about 3 weeks now, and I have little bumps all over my hands and arms and back that itch like crazy. I highly suspect everyone else in my family has parasites, too. DH won't even consider tx unless he has labwork proving it, and I'm honestly hesitant to try anything for my kids until I know a little more. Plus, it would kind of be nice to know if I am getting all of them out of me (I'm presuming I have them because of the reaction I'm getting...it's not hives...more like little bug bites that have popped open, because of such intense scratching.

Maybe herxing.

Great article. Thank you for sharing. I started treating with artimicinin, and omg I am so incredibly itchy. I have bumps all over my arms and hands. I presume I am herxing, and will, at least for the time continue treating with this stuff.

We, also have added in homeopathy, as well as other supplements, supporting the gut, detox, and working on the immune system. Doing well at this time, although we did have a setback when our house was filled with mold (poor mold remediation job.) But, it also confirmed that we were living with mold all these years. We suspected that there was mold, because it kind of smelled musty since day one, but couldn't find the source. We appear to have found it by chance, but only after it all got released into the air.

Depends how low IgA is. And, yes, there are other brands that can accomodate for low IgA. We had good results for both my boys getting IVIG, but we never had a particularly bad reaction. And, as also mentioned, we also have done a lot with supplements, supporting and treating the gut, immune system, yeast, detox, and homeopathy. It really is the packaged deal...not just any one thing.

Soy affects hormones. Soy can also be the cause of allergies. I don't drink milk, but I do use rice milk and almond milk. I've also tried coconut milk (I don't care for it, but I know people who love it.) There are lots of options besides soy.

DS also had those, and, in his case, were extremely painful. Another thing to look at, besides mold (we are also fighting a moldy house...just had the whole kitchen gutted, and many of our symptoms went away when we left the house to stay in a hotel, and then returned when we got home) is lyme. Lyme Disease will also cause these symptoms, and he has had minimal to no "electric shock" type feelings since he started treatment.

Yes, just make sure you take it several hours before or after anything else (it detoxes everything...good and bad.)

Thank you. Very interesting information

In my personal opinion, I would not get the vaccine. You want to calm the immune system down, not try to get it to start fighting things again. Again...just my personal opinion.

Given the fact that no one has any clue what flu is going to hit in a given year, it's all just a crap shoot as to which vaccine they put out. Also, keep in mind that there is minimum to no testing done on those vaccines. It just blows my mind how people just go and get them each year. Even my lung specialists office told me that it wasn't helping most of their patients, when I said I wasn't going to get it anymore! BTW. My children and I do not get any more vaccines of any sort, except in an emergency (like tetnus, I suppose, if they absolutely needed it.) Our kids can't handle any more assault to the immune system...their bodies don't fight illness like other people do, so expecting them to get a vaccine and not get a reaction is absurd. We've had 4 doctors tell us no more vaccines.

Agreed. But, I'd like to know specifically, since I know found out that his enlarged spleen and low WBC 2 years ago was babesia. Treating with chiropractics and hydrocortisone only seem to be keeping it, sort of under control, but actually the hydrocortisone doesn't even seem to be helping (unless it's keeping it from getting worse.) Plus, hydrocortisone can make him more susceptible to immune issues, which is what we're trying to avoid in the first place. Any ideas, anyone? Oh, btw...hope you all had a fantastic Thanksgiving. And, keep Elizabeth Wray and her family in your prayers. Last I checked, she's still being held at BCH.

Does anyone know if this is related to anything like lyme or one of the co-infections? I know that low wbc, enlarged spleen are...which DS had several years ago...but now he's been fighting problems with his adrenals being low. His numbers are at the very low end of normal, and his LLMD put him on hydrocortosone. They went up for a few weeks, but now the numbers are down again. He keeps having his left leg turn out (not happening now, but definitely has happened,) which his chiropractor said was definitely from the adrenals. He has also been fighting something off (said everyone at school is sick, and hasn't been feeling well for about the past month.) MycoP IGG just came back 100 points higher than last time they were checked, and I told the dr. that I wasn't surprised, because I feel like I have been getting it again for the past month (I'm the one who had the high IgM.) So, what does it mean if the adrenals are at the very low end of normal? Thanks.

That's fantastic!

My son also just turned 17 (last week), and after 9 years of this, I have to agree that it does get better. Thank you for sharing. I'm really, really glad that you got him treated, and found all the help that you did. And, I do definitely remember you. Happy Birthday to you.

STAY AWAY FROM BOSTON CHILDREN'S AT ALL COSTS!

SmartyJones...How do you get the parasites out of the brain?

Please do PM me. This is EXACTLY the same symptoms I have had for several years now. And, the past few weeks, I have had horrendous itching on my arms and back, to the point that DS noticed, because the skin was torn. I thought it was dry skin, but now I think it's parasites (it's definitely worse at night.)

Interesting. What made him decide to treat you for parasites? he never mentioned them to me, but I really suspect it is part of my problem. Was there a test he did?

Very interesting. I've had terrible itching, and some of the other symptoms. Who did you go to for treatment?

Gait is simply the manner in which a person walks.

Fever is good...helps the body fight infection. My DS hasn't had one in as long as I can remember...no matter how sick he is. Other suggestions that have been put out are very good.

Obsessions are obsessions. None of our children have the same obsessions as another. As suggested previously, I would definitely suggest you get in with a specialist as soon as possible. They are hard to get appointments with, and even if you are lucky enough to have a pediatrician who will follow what the specialist says to do, you still have to see the specialist. May I recommend, too, though, that you also check for other infections. Bartonella (an infection believed to be similar to Lyme Disease) as well as Mycoplasma Pneumonia (a type of walking pnemonia, which is also an atypical pneumonia) can cause the angry rages you are seeing. My son had both bartonella and mycoP. Also, many of us have found that in addition to strep (and/or instead of strep) there are other infections as well...lyme, staph, etc. With PANDAS/PANS, the immune system is affected, so the person is highly susceptible to getting more than just one infection, even though it may be the one infection that may have "thrown it over the top." Additionally, many of these kids have difficulty fighting infection, and metabolizing vitamins and such. There is something called an MTHFR gene mutation (Methylfolate receptor, I think), and many of our kids end up having the mutation. This makes it difficult for the vitamins and such to be processed by the body, so they may appear to be low in vitamin D, B vitamins, etc., and some of this can explain the symptoms your child may have. I know it's confusing, but again, I would start with a PANDAS and/or Lyme specialist. Good luck.

Who's doing the PEX/IVIG? Just curious.