

Wilma Jenks
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Everything posted by Wilma Jenks
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Is azith. used for Lyme or bartonella???
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it seems to soon to say this, since i have only been on doxy for about 5 days, but i don't feel like i have the flu everyday. i am sleeping like a baby. could i see results this soon?
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Bactrim is making my child to aggressive
Wilma Jenks replied to Wilma Jenks's topic in PANS / PANDAS (Lyme included)
her ocd got really bad when on full dose of bactrim. we backed down and she is a bit better. we are just going to stick it out and see what happens. man, she was out of control today. i am exhaused! -
Bactrim is making my child to aggressive
Wilma Jenks replied to Wilma Jenks's topic in PANS / PANDAS (Lyme included)
I can't get probiotics into her. They always make her so much worse and it just never seems to get better. I have tried for years. I will keep trying though. -
Bactrim is making my child to aggressive
Wilma Jenks posted a topic in PANS / PANDAS (Lyme included)
anyone find the bactrim to make their child too aggressive? what did you try instead??? -
What is vancomycin used for besides PANDAS?
Wilma Jenks replied to Wilma Jenks's topic in PANS / PANDAS (Lyme included)
is c-diff the only thing there is for clostiridia? -
does anyone have a really hard time parenting there child? i can't get her to come home from a friends house, or leave a party or do anything. she is a great kid, but she is stuck. i think it that she has one thought on her mind,,, and that is to stay and keep doing what she is doing, and i can not budge her. she is 12 and i still can't get her to listen to me. actually, i know she just can't follow through on what i want her to do. she is just so hyper, and super focused on what she wants, that life is so tough with her. does anyone relate, to not being able to parent???
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i have used this for clostridia, but was wonder if it is also used for lyme or other tic born infections????
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MY IGENEX RESULTS. What do you think?
Wilma Jenks replied to Wilma Jenks's topic in PANS / PANDAS (Lyme included)
I was tested by a doctor that deals with PANDAS but knows a little about Lyme. I think I should see someone that deals specifically with Lyme. Anyone know of anyone in Northern NJ??? -
I will try to be clear. One of my child's big symptoms is that she gets stuck and does not come away from TV or computer. She is "stuck" watching the same show over and over. Doesn't even hear people talking. Doesn't get outside usually. When she was on Vancomycin she was able to get outside and interact with people, but at night her OCD was horrible on this stuff and she never slept. Then I tried bactrim...and it helped with severe insomnia, OCD and she was able to shower, but it made her pretty mean and aggressive and being "stuck" got much worse. My thought is...wouldn't it be nice if I could give vancomycen to bring her out of her world during the day, and also give bactrim for her severe OCD and insomnia at night. Not sure if there two abx. work together or if they would give them for her Dx. which is Bartonella. Am I making any sense to anyone???? She has clostridia too. Perhaps the vanco is helping the clostridia, and the clostridia is the cause of her being "stuck" all day. Can anyone give me there 2cents please. I just can't get this kid "unstuck" or budge. Thanks
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MY IGENEX RESULTS. What do you think?
Wilma Jenks replied to Wilma Jenks's topic in PANS / PANDAS (Lyme included)
will the docycline cover bartonella too? and can i get rid of this lyme thing? -
MY IGENEX RESULTS. What do you think?
Wilma Jenks replied to Wilma Jenks's topic in PANS / PANDAS (Lyme included)
will the docycline cover bartonella too? and can i get rid of this lyme thing? -
MY IGENEX RESULTS. What do you think?
Wilma Jenks replied to Wilma Jenks's topic in PANS / PANDAS (Lyme included)
I tested negative to bartonella, but my girl tested possitive. Perhaps I have it and it just isnt showing up. I have felt sick for a really long time....even as a kid. Never looked into. My child is soooo much sicker though. Non-functioning. I was very high functioning. Probably too over productive. I could not stop from being busy, with racing thoughts. Ugh! Doc has me on doxycycline, I think it's called. I guess I will see what this stuff does... -
It says: IGENIX IGM RESULT POSITVE CDC/NYS RESULTS NEGATIVE 18 kDa. - **23-25 kDa. - 28 KDa. - 30 kDa. - **31 kDa + **34 kDa. IND **39 kDa. - **41 kDa. ++ 45 kDa. - 58 kDa. - 66 kDa. - **83-93 kDa. - IGENIX-IGG-RESULTS POSITIVE CDC/NYS-RESULTS POSITIVE 18 kDa - **23-25 kDa + 28 kDa - 30 kDa - ** 31 kDa IND **34 kDa - **39 kDa + **41 kDa +++ 45 kDa. - 58 kDa + 66 kDa. - **83-93 kDa. +
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It says: IGENIX IGM RESULT POSITVE CDC/NYS RESULTS NEGATIVE 18 kDa. - **23-25 kDa. - 28 KDa. - 30 kDa. - **31 kDa - **34 kDa. - **39 kDa. - **41 kDa. - 45 kDa. - 58 kDa. - 66 kDa. - **83-93 kDa. - IGENIX-IGG-RESULTS POSITIVE CDC/NYS-RESULTS POSITIVE 18 kDa - **23-25 kDa - 28 kDa - 30 kDa - ** 31 kDa - **34 kDa - **39 kDa - **41 kDa - 45 kDa. - 58 kDa - 66 kDa. - **83-93 kDa. -
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does anyone get insomnia from the bactrim and minocycline, and also nauscea????
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Things are improving slightly with my girl, but she is still really stuck. She just stares at the same movie all day long. Sleep, OCD and being able to shower improved though. But there is no way I can get this kid to school. She is still VERY ill. She is 12 and has been sick since birth. We have been doing the bactrim and minocycline for almost 3 months. I guess it could take years for someone that was sick for so long, right?
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Scrambling and not sure what to do?
Wilma Jenks replied to Wilma Jenks's topic in PANS / PANDAS (Lyme included)
Thanks for the suggestions. She is showering but won't bathe. She for sure has made progress but she is still aggressive and I am not able to get her to school let along any therapy. She is not "resisting" me, she is just a very sick girl still and not able to pull herself together yet. But the gains I have seen are BIG!!! She showers, sleeps at night and I don't see much OCD. I am getting in-home tutoring, so I am happy about that. -
Ok, I will try to make this clear... My girl has definitely improved on the low dose of bactrim and minocycline. She started showering, sleeping and her OCD is way better...but she is starting to get mean and a bit impulsive. She is only on about 1/4 of the prescribed dose of these drugs, per doctors orders, since she is so sensitive. I am trying to figure out wether to try going up again slowly again, back down more or the bactrim to the cipro. This is a short version of what I saw happen when starting these drugs: She was on lamictal alone and was less aggressive but OCD was bad, she was not sleeping or showering and super hyper and confused I added in bactrim and she started to sleep, but it made her mean. I added in minocycline and it made her less mean, she started showereing and OCD got better. I kept going up on these two drugs, and she started to bounce off the walls and could not catch her breath and OCD got much worse. I backed down and she started to do better, but now I see her getting more mean and teasing kids/impulsive, she won't let her friends leave when its time for them to go home. Her OCD, sleep, and being able to shower are still good. Not sure if I should try changing the bactrim to cipro??? Or do you think I should a psych. drug into the mix for this aggressive behavour??? She was on seroquel, but it put her into like a coma state. Not good for her. Any suggestions. I am a bit confused. Thanks a lot. I suspect the bactrim is making her like this, but I am afraid to change it since I see good things too. I am a bit confused and need some diretction.
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thanks so much. we are not up to full dose yet, we needed to back down a bit because she is so sensitive to meds/supplemnents. i will ask about it. thanks. she does complain about feeling old and achy while on this treatments. i think i read that this happens though.
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well it has been a long 12 years, but i really see that we are at least on the right track now. it seems this bartonella was making my girl completely non-functioning and psychotic looking. the gains have been: she has a friend for the first time and she is playing quite nicely. the biggest think is that she sleeps! it is a miracle. i can't explain how torturous nights were for her. it was a living ######. pardon my french, but it the only word that really expresses what it was like! she showers and can dress herself. she use to be too confused and psychotic. she is not aggressive with me and leaves the dog alone. her ocd is much much better. i want to thank you guys so much for helping me. it was killing me, to see my girl suffer. i was really starting to think there was no hope. i get my igenix results sept 15th. i will keep you posted. your all the best!!!! ps. i do see some impulsivness creeping back in and i am a bit afraid it will interfere with this relationship she has. does the healing with the bactrim and minocycline have its ups and downs??? perhaps the pdoc. will add something in. not sure if the impulsivenss and teasing comes from the ocd or what happens. thanks again. any advice is welcome.