trintiybella

I tested possitive for lyme and was on doxy for about 6 months. Felt pretty good for awhile but now after being off of it for 4 months I am wondering if symptoms are coming back. I have had a really bad pressure head ache on top of my head for weeks.. Nothing has helped the pain. Had an MRI and showed nothing. The head ache is constant and through the night. Has anyone had a head ache with no relief EVER from lyme??? I am going back to the doctor but would like to hear others story. Also, is it true if you had lyme for many years that doxy is not likely to work??? Thanks

Well said rowingmom!

Thanks for sharing Anna. What do you mean "doses started conservatively." Is that a bad thing?

I was going to give the diflucan a try because I want to attack yeast in other places besides the gut. My girl has so many psych. problems that I am thinking there is probaby yeast in brain too. There was no die off at all with ampho. and it makes me wonder about it working on her yeast. Do you think my thinking makes any sense?

Is diflucan better for yeast than amphotecerin because it crosses brain barrier? From what I understand the ampho doesn't leave G.I. track so how will it kill yeast in other parts of body???

Ampho doesn't give her a head ache and seems to help her but diflucan gives raging head ache. Do you think head ache is a good sign and its killing yeast? Perhaps I need to push through with the diflucan?

OK. I will try that. Thanks. For severe head ache, would you then give motrin or tylenol? Because they are super bad head aches and she is prone to migraines. I have another question for you. If your child tolerated diflucan and also amphoceterin, which would you give? Do you think one is a bit less dangerous for their bodies than the other. Might as well give the one that is a bit safer, right? Thanks so much for the help. It is appreciated>

Rowingmom. I am going to stay with what Dr. J's prescribed, but I am trying to add in some other supplements that are critical I hear. Dr. J. doesn't really speak about the gut and supplementing with anything. So on my own, I added the omega's, milk thistle, Iron etc... I was just wondering if Vitamin E would be good, or some of the B vitamins. Thanks for the help.

Rowing mom. Can you tell me how long it took to see sleep improve with the bartonella treatment? Thanks.

My child had SEVERE insomnia. She stayed up around the clock and would then go to camp. Come home and sleep for 20 minutes and go to camp the next day. Went on for four days until we added the abx. back in. Here is what she is taking, and she falls asleep by 11:30 now, but it is not a deep sleep. Wakes at the drop of a pin. Still working on it. I hope this list of her meds/supplements helps you. Thinking of you.... 11am Bactrim 80/160 Minocycline 50mg Breakfast- with food Milk Thistle 600mg Motrin 4000 ui D3 6pm-Empty Stomach 10ml Iron 300mg Omegas 8pm 1/4 Capsule Milk Thistle Bactrim Minocycline 11pm 50mg Mag. Citrate 2-Melatonin 6mg. Seroquel 2 sm. scoops D-Lactate custum probiotic.

She has been on motrin for 3 days. I can't get diflucan into her because it gives her such severe head aches. I am trying to give motrin so that perhaps when we start the diflucan again she can take it. She was on amphoceterin for yeast and we thought THAT was causing severe head aches but it WAS NOT. It was too much probiotic that was doing it. I was thinking about going back to the ampho, since she tolerated it so much better. Perhaps I can cut back on the motrin and try the diflucan VERY low and s....l....o....w. I really appreciate your feed back. We are definelty on the right track now, I just need help adding things in to help her body heal. The bactrim/minocycline is bringing out numerous stretch marks. I am so happy! I hear it's a good sign. Poor girl, doesn't think it's so good though. I hear they go away.

Severe insomnia is much better but she never looks like she is completely asleep. Eyes open and close and she wakes if you breath next to her. She looks so uncomfortable. What would you do next? Upping melatonin usually never helps. Never has markers for PANDAS, so I don't think that is it. I am thinking parasites or viruses, upping omega's,??? Any advice??? 11am Bactrim 80/160 Minocycline 50mg Breakfast- with food 1/4 Capsule Milk Thistle 600mg Motrin 4000 ui D3 4pm-Empty Stomach 10ml Iron 300mg Omegas 8pm Bactrim Minocycline 1/4 Milk thistle 10pmpm 50mg Mag. Citrate 2-Melatonin 600mg Motrin 6mg. Seroquel 2 sm. scoops D-Lactate custum probiotic.

My child has severe constipation. I am talking severe, with rectal prolapse. I noticed every time I start something with iron (floradix with herbs or black walnut oil) she becomes regular. I did a little research and found low ferritin levels can cause constipation. Adding iron to her regimen seems to be the trick for her. Her ferriitin=17. Hope this lasts for her, and I hope this can help others!

Would that be a urine test for yeast or stool? Thanks!

My girl is doing better with the antibiotics. As soon as I add in Fluconazole, she is on the couch with severe head ache for 7 days now. Detoxing with milk thistle. Lots of water with lemon. Have probiotics on board. I was going to start with the motrin 3's p/d and then try adding the Fluconazole again. I was just wondering how long this drug needs to stay on board? Is it something you give for as long as you give abx.? thanks!

No, they did not give any explanation of symptoms. They said see a psychiatrist.

I have been to three different neurologist there at the start of all this mess. They looked at me like I had 3 heads when I told them of my child's symptoms. I guess they have someone new that "gets" it, finally! Lots of luck. Thinking of you....

My child has had so many migranes and vomiting the past few months. It seems to correlate with upping probiotics. Has anyone seen this happen? Thanks

Please don't feel responsible. Your not. Your mom sounds awesome!

has anyone tried topomax? looks like we will have to stop it because of VERY bad head ache. we are down pretty low and things are still unbearabe for her. wondering if anyone had same experience???

You get medical insurance with the SSI?

Hopefully in future I will be able to restart my business or get a job. I had to give everything up because child was too sick. Could not leave her for a minute. Is there any financial help for parents in this situation that you have come across??? Thanks for any advice!

Is two months long enough to give for severe herxing before we say enough is enough?

That's wonderful JoyBop! Would they treat Lyme and Bart too?

I went primarily to find out about gene mutation (CDKL5 Mutation Long QT Syndrome) on genetic testing and to see if she could help us get in to see Dr. N. She snickered at the gene mutation and didn't even address it. She thought it was a bad idea to be on antibiotics for bartonella. Did not like the idea of doing an IVIG, before doing a puncture lumbar to see what is going on. I was all for the PL, but then she kind of dismissed it when she heard we have a family history of OCD and possible tourettes. She said all my girls troubles are hereditary. I told her I am sure some of them are, but my family members don't hallucinate, don't stand on their head all night long and talk to imaginary friends all day. Their pupils don't dilate when bombarding thoughts get really bad either, and they don't flip out on all medications that they try. I told her my child is covered with red stretch marks. She said its weight gain. (my child is skinny) When I got home, I looked at her business card. It says she is "Assistant Professor Clinical" what is that??? I was told I was seeing a genetisist!! Oh well...I am taking a deep breath and moving on.