trintiybella

Can you tell me how this drug has helped you, if you have used it. Thanks so much.

My doctor wants me to take acidopholous. The guy at vitamin shoppe said it it the same as Sac. B. - just another name for it. What other proboitics wouid be considered to be acidophous? Thanks

Has anyone had this high result on a test and did you do anything about it?

I really don't know what other tests they would do. Between NYU, and all the doctors she goes to, she has had so many, but I will ask. This the only thing they have found on tests: Abnormal EEG, prone to seizures but no actual seizures high glutamate and glutamine Low vitamin D = 11 Restless leg syndrome on sleep study Low ferritin=17 CDKL5 Mutation Long QT Syndrome Bartonella Lyme TIBC (Iron) High but some tests say low. Weird. Clostridia Bolteae. On next test it was gone Total cortisol/DHEA-S ratio abnormal. Total cortisol is high Alka phosphate very high (260) She has low stomach acids Blood work showed very high B6 levels then another blood test said normal. CAM Kinase 166 Low white blood count, could be viral High C4A, which means inflammation Low CD 57, which could be lyme High cholesterol because of vitamin D3 deficiency (their related) High triglicerides Allergic to yeast Plasma renin quite high LDL cholesterol high ALCAT showed severe reaction to: phenols, acetaminophen, indocin Says there is a problem with M. Pneumoniae antibody. Is it gig marker. Bifidobacterium low Fungal infection on MOAT test Serine Pl low Lots of elevated viruses (EBV, Herpes, etc…)

We are seeing a new doctor who very much thinks she needs it. He is trying just a few things first and then he is going to try to help with getting insurance to pay for it. I doubt they will but I will steal beg and borrow and get it done!

When I start valtrex she gets stuck ton one thought...she keeps asking over and over if she is german, irish, italian. If you say the wrong thing, she starts over. It never stops. Upping yeast protocol does not help When I give bactrim and minocysline she gets super focused on her weight and stops eating. When I give ability, she gets stuck on one person that she doesn't like. Long story short...I am seeing that everything we try perhaps makes her more focused and it also makes her focus more on OCD. Hard to explain myself, but without meds...she is kind of so stuck with racing thoughts and OCD so bad, that she can't shower or go to the bathroom. When I add certain meds in, she can go to the bathroom and get out of the house, but something always gets worse too. Like being super focused on one OCD thought. She is really losing weight fast from the anorexic thoughts, so the doctor wants me to back off of the minocycline and bactrim, but then she will be on the valtrex and then her one thought (around the clock) will be about being Italian, french, irish etc... Please give me some of your thoughts. Thanks! PS...I have tried so many psych. drugs with disastrous results

She has been on bactrim/mino for years and I really don't see much improvement from it really.

When I add in minocycline and bactrim for the lyme and bart, my girl goes into her autistic world even more. She won't even talk when I up it. I was thinking it was yeast, so I up the amphoceterin and it does nothing. So I figured it was not yeast. I then added some valtrex and it seemed to bring her out of autistic world. I then added more minocycline and she is back in the autistic world..I think if I added more valtrex, I could bring her out again but we are highest dose. I am so tempted to see what she looks like on just the valtrex, but not sure if I should stop the lyme/bart treatment and try this. I have seen nothing good come from the minocyline and bactrim thus far, really and she has been on it for a few years on and off. I am speaking with Dr. B. on Wed. but wanted to run this by you to see if anyone has any input. Thanks! PS As I went up on the antibiotics and amphoceterin her anorexia also got really bad and it's going on 4 moths of not really eating much at all.

Awesome news and so happy for your family!!!! Can you share which antibiotics Dr. J. used for the lyme/bart. Thanks so mucH!

ktdommer - you can try again. I deleted some of the messages.

Its' not that she won't take it. The problem is that when she does it makes her way too aggressive.

Has anyone ever discovered that viruses were even a bigger problem than tick born illnesses?

It is kind of frustrating that I my daughter can't qualify for SSI because you must have less than $2,000 in assets (or $3,000 for a couple) and a very limited income. I do have some money saved, but I want to have something left to help my daughter later in life. I wonder if there is anything else out there for people in our situation? PS My child was accepted for DDD (Division of Developmental Disabilities Residential) for later in life. She has working arms and legs and looks totally normal. I think what helped is that the state sent psychologists and case workers to my home for a year or so, and they saw my child first hand. I am working so hard so she does not need this and can live on her own. The whole idea of being under someone else's care, that does not "get" her situation is very unsettling!

Thanks to both of you for your help. I don't know what I would do without you!

I have tried so many times to get these oils into her and she gets so nasty and goes deeper into her autistic like world. Has anyone had this experience. I desperately want to get them into her because I know it helps the brain so much! :0(

What exactly is SSI? Does it help pay your medical insurance, doctor bills? Does it help house you later on in life???? I spoke to social security yesterday and there is so much to learn about this process and very confusing. They did tell me that "disability" insurance is for adults and "SSI" is for children, but then when I called back, another agent said that was wrong. And what about medicaid?? Is this the same as SSI? Thanks

Pow Pow, it is me (adult) being treated. It happened on doxy too. I am hoping it's not an allergic reaction. I think it lasted a month on the doxy too, if I remember correctly. I will keep you posted. Thank you everyone for your help.

I started on bactrim for lyme and I feel like there are invisible bugs biting me. They end up being itchy and are driving me crazy. I remember having similar reaction to doxy. Do you think this is die off?

Don't you hate when that happens! You sound amazing and I wish some peace and progress for you. PS Not sure if this is okay to say but your "Title" cracked me up and I don't find much funny these days

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Hang in there you guys. It's true that there is hope for our children. My girl has suffered for 14 years but I swear I am going to get her better. You will to!! I know what you mean about hearing about other peoples lives. This is such a lonely illness. Family and friends drift away. Doctors don't believe you. It is so tough, we are pretty strong parents to deal with this. Once a year, I let myself have a really good cry, which helps. Then I get back to work. :0( I have all of you in my prayers.

I am so happy for you!!! Hope it happens here. My girl here. My girl is losing so much weigh from anorexia. Such a worry.

I have heard from other moms it could be virus coming out (in the case of the valtrex.) I only hear that from one parent though. Looking for others experiences!

Valtrex is helping my daughter a lot but she's breaking out what looks like acne on back and face. She's 15 and this is tough for her. Has this ever happened to anyone?

I did the 23andme test but I don't see 1 million snps on it. Any tips?