MamaOnAMission

The first thing I looked into was the mold thing. Trashed everything in the house and had so many allergists and NAET people etc... check her out. I have to look through all of her records and look for those tests. I will PM you, if its ok? I am really thinking that S&S could be onto something with the antibiotics making yeast, but I just can't seem to get these proboitics into her without making her so agressive. I am going to try some other probiotics too. I am thinking perhaps New chapter or threelac might be worth trying again. I seem to have real problems with culturelle. Thanks so much

S&S The longest she's been on antibiotics has been 4 months and its bactrim and doryx. Do you know if either those help with sinus? Before that she was on other antibiotics but not more than a month here and ther since she got worse and it never stopped. Another good point you made was the yeast. This is what I saw happen: when I got to full dose of bactrim and doryx her nose stuffed with cement as she calls it. I gave her 1/2 Culturelle and stuffy nose went away for three days and came back. So I upped Culturelle and she got agessive and stuck on one thought for weeks. Lowered Culturelle and not stuck on one thought. I am thinking I should try a pinch of different probiotics together but keep it small. In the meantime I got appointment with ENT and a docttor that's gonna look into mutation thing. Thanks so much everyone for the help

Thanks. Scott mentioned IVIG AND SAID WE WELL NOT BE COVERED. I'll call him back. Thanks good advice

Thanks. I'll look into everything! I spent thousands checking mold in house. Spent thousands traveling to different homes and hotels to run from mold. She's almost 14. This kid has suffered so much! I just called all of her doctors for SOME help. I also pleaded to Dr. Phil for help! They want us on the show! Perhaps he'll get us some help!

Stuffy nose always seems to get bad when on an antibiotic. She said it is like cement up her nose.

Seeing Dr. J. (LLMD) and Dr. B. (Immunologist) The MRI was done years ago by a nuerologist at Children's. They saw sinus infection but were not concerned AT ALL. We do not have and ENT. Perhaps Dr. B. in Conneticut can take care of things. We have an appointment end of Feb. with him, or should I call him tomorrow? We probably waited too long already. My child is currently on Bactrim and Doryx. I welcome your advice.

She was ok for awhile then got sick and OCD and confusion are out of control. We have had tons of tests and labs and this is what we have. She has low IgE and IgG4 Abnormal EEG, but not seizures. Focal epileptiform discharges on right frontal central temporal area. High B6 Cam Kinase 166 Restless leg syndrome. Possitive for Bartonella/Lyme High cholesterol because of vitamin D3 deficiency (their related) High triglicerides Clostridia Bolteae Low Vitamin D levels (11) No titers for PANDAS C6772T MTHR mutation identified Result: C677T Single mutation (C677T) identified. Triglycerides high Homocysteine high Serine Pl low Says there is a problem with M. Pneumoniae antibody Total cortisol/DHEA-S ratio Abnormal Cholesterol high LDL cholesterol high TIBC (Iron) High Plasma renin quite high ALCAT showed severe reaction to: phenols, acetaminophen, indocin Bifidobacterium low Blood work showed very high B6 levels Lump under right ear at birth Sinus infection on MRI at 5 years old. Reaction to histimine control with allergy testing High urine glutamine and urine histamine high Conjunctivitis Nasal mucosa and swelling and paleness, post nasal drip. Excessive ear wax Alka phosphate high Constant stuffy nose Susceptibility to tetracycline is predictive for susceptibility to minocycline, however in vitro resistance to tetracycline may or may not accurately predict resistance to minocycline. PLEASE GIVE YOUR OPINION. DOCTORS ARE MISSING SOMETHNG. THEY NEVER MENTION SINUS INFECTION. IS THIS THE MISSING PIECE???

VERY WEIRD AND DISTURBING. Each doctor keeps passing me onto the next I think because she is so sick with such severe psych. symptoms. I am just exhausted! Should the lyme doctor be addressing the sinus or should it be our PANDAS doctor. I thought PANDAS, RIGHT. And what can be done. Do they scrape sinus. Is it a different antibiotic???

None of the doctors thus far have addressed the sinus infection that showed up on her MRI. Is there nothing that can be done with a sinus infection? Should we try a certain antibiotic for this, and what doctor would help with this. Would it be LLMD or Immunologist???? Ugh.

My child's test said: C6772T MTHR mutation identified and... not one doctor said to do anything about it. Also, what does " homozygous" mean????

I was looking through old medical records and saw this. "Susceptibility to tetracycline is predictive for susceptibility to minocycline, however in vitro resistance to tetracycline may or may not accurately predict resistance to minocycline" It caught my attention because we have used mino and may try it again in future. Anyone know what this means??? THanks!

My child had this test done for food sensitivities. I was wondering if anyone ever had this done and if they feel it is accurate or helpful to their situation.

What did u see get better?

My girl has restless leg syndrome and low ferritin levels. She's pale all the time and very mentally unstable from Lyme and bartonella. Do you still think its a bad idea to supplement some iron???

Has restless leg too! Going to start supplementing with iron!

Seems like she was coming along and a little. Racing thoughts and confusion were a bit better and then she got the flu. She seems to be locked in her own little world again. Does getting sick make Lyme/Bartonella worse????

I tried New Chapter All Flora. I have heard it may be a bit more gentle. Our LLMD said not to give any since we have such a hard time getting them into her.

I have been trying REALLY HARD to get these probiotics into my girl. I have given small, medium and large amounts of culturelle. This stuff (and other probiotics make her so confused and agitated) And... I (the mom) have been soooo sick with flu for two weeks and was not getting better. It was really weird! Then I thought....hummmm, wonder if this florastore that I started taking could be making me sick. Sure enough, I stopped it and BAM! I was totally better the next day. Out of curiosity...I started the florastore after a week and was back in bed again with flulike symptoms. I did some research and this is a side effect of florastore. Just wanted to share....

Just watched Dr.Stasha Gominack and she was fabulous!!! I also tried finding her website and was not able to.

Jag10-Did you just stop the D3 and switch over to the D3/K2 abruptly or did you do it gradually? I am so nervous changing things on my girl. She is so unstable and sensitive to any small change. Do you think I should I should giving the D3 that I am giving and just add the K2 into the mix instead???? Also...is the D3 with K2, the Vitamin Shoppe brand, in case I go with them?

The vitamin d3 helps mt girl with confusion and sleep but it does make her a bit nasty, but so does everything we try. Hopefully she will even out.. I am adding magnesium for constipation so perhaps magnesium might take the edge off.

He's a terrific man and has helped my child. I am sending money.

I have citrate and asporatate in pill form. Which one is best for constipation and how much should i start with. Shes 13 and about 110 pounds. Thanks

I was wondering if anyone could suggest an LLMD for Northern NJ. Driving to Conecticut is a bit far for us right now. Or a DAN doctor in Northern NJ, if you think they can treat LYme/Bartonella

We see a Dr. in Coneticut for the lyme/Bartonella and a psychiatrist in South Jersey for psych. symptoms. She is currently just taking a small dose of lamictal. She does not do well with any other psych. drugs and I am not so sure she even needs this lamictal. I was thinking of just seeing a DAN doctor for the antibiotics and perhaps the lamictal. One stop shopping would be great. Is this possible??? I am also wondering how this looks with the school. Right now I think the school is understanding because I have a psychiatrist behind us. Not so sure if having a DAN doctor would make things worse for me. Can you please give me your opions?????