wesimkins

I'm not sure how old your child is, however I think I personally responded better to doxy than mino. I am on mino now because I wasnt able to keep the nausea at bay with doxy, however I think I may switch back. Definitely lifted the "fog" better than mino for myself. Hope that helps.

Have you looked into a charter program? We have a couple here (San Diego area) that meet 2x a week with the rest of the work being completed at home. We found it best to homeschool 2 of ours and add supplemental classes as needed :-) Good luck with whatever you choose,

Hoping to hear some opinions. My Llmd thinks maybe oral antibiotics arent working. Tried various combinations the past year and a half. Thought we were doing ok, stopped the antibiotics and symptoms returned (mostly neuro). She thinks we need to try iv abx. The problem is we may not be able to afford them. Is it possible to keep lyme at bay with oral abx in all cases? It seems in my case they keep the symptoms to a minimum but as soon as I stop the symptoms return. Im taking Flagyl, Doxy, and Azithromycin. Im allergic to Penicillin. Possibly going to add Rafampin as a last resort? Taking lots of herbs and detoxing like crazy. Feeling like I might never be able to stop the meds. All thoughts appreciated ;-)

Thank you for your reply. I am splitting a 500 mg capsule. Today is only day 2 and his tics are continuing to worsen. Hopefully they will settle down soon :-) Since this is our first year we havent quite gotten used to the idea of them going away only to come back.

Hi! After reading a few posts and after the past few weeks of worsening in my sons tics I thought about adding in Glucosamine Sulfate. I know it was in an older formula of Kirkman Spectrum Complete which we have been using since March. I do not know where to begin dosing him at. He is 59lbs. Also can I still continue the epsom salt baths or could that be an overload to his system? If your familiar with the supplement, id love to hear from you. Thanks :-)

Hi, I am so sorry for you and your family. This board has been a huge resource for us and I hope for you. I guess I would say not to panic. We try to take one day at a time. Our son begin having tics/behavior problems a year ago. We enjoyed a relatively peaceful 7 months and now things have turned for the worse. I would recommend getting an IGENEX test for the Lyme. I was CDC negative but very positive based on their criteria and the treatment I am receiving is allowing me to live a semi-normal life. My son saw a neurologist at Childrens who said we could medicate if we wanted but there was nothing they could do otherwise. We are treating with supplements know that have helped so much. Comb the boards there is a ton of information Sending HUGS.....Windy

I just want to add that since being on diflucan 200mg a day, I feel TONS better. Many neuro symptoms are gone and others drastically improved;-)

Thanks for the link...I may ask for Tindamax instead of the flagyl Ive been taking ;-)

Thanks all! Makes me feel a bit better. I think the Flagyl is 1000mg/ daily for 2 weeks and off for 2 weeks, but that may be for the Azithromycin, I need to check :-) I'm glad you think its a good start, and yes the Flagyl has me down more than I care for, mostly just fatigue and nausea. Glad to know its doing something! I will check into the other if its getting too hard to handle.

Hi, I am separating the doses. I have learned how to navigate the doxy, the azithromycin seems to be alright. I forgot I am also taking diflucan twice a day. The flagyl is giving me the most trouble. Besides the severe stomach upset, I dont like the cloudy emotional feeling I get on it. I guess I just want to know that this sort of combination falls within "normal" for treating Lyme. We are doing monthly liver checks... thanks,

My son had many facial tics and though a very small mouth stretching has returned we had success in Kirkman Spectrum Complete (unflavored) removing gluten/dairy, and many dyes and non organics. Getting enough sleep is also a big issue with him. I dont know which of the things we changed had the greatest effect however I would try the Spectrum Complete and maybe even some dietary changes as well. Good luck, I am so thankful his tics arent bad now, they are so scary for me to watch.

Hi, I'm still new here but curious to your thoughts about the following dosages for a recently diagnosed case of Lyme. Not sure how long I have had it. I dont remember being bit. My Igenex was positive and had I had a positive vs IND on one band the CDC would have been positive to. I am taking: 1000 mg Flagyl 500 mg Azithromycin 400 mg Doxy possible omnicef in the near future. I am pretty miserable. I was feeling much better on Doxy alone. Anyone have experience with this or a similar combination? and any tips to keep them down? Thanks :-)

I dont have any experience with a child and Bells Palsy, however I was diagnosed with Bells Palsy in April, along with many neurological symptoms that came in the upcoming weeks. I was told it was most likely MS ( mother has it ...maybe Lyme?) anyway I also slept for ridiculous amounts of time that first month. Recently was diagnosed with Lyme via Igenex. This was after a negative Western Blot ordered by my MD. I would suggest the Igenex test. I hope she finds a doctor who can help her soon.

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Hi Everyone, I just wanted to extend a thank you for leading me down the Lyme path as a possible diagnosis. My son is doing better and has yet to be tested (will soon, finances are causing us to treat the worst case first:( however I received my IGenex lab results today and they are positive for Lyme. I also want to thank SFMom for the recommendation of Dr Nicola in San Diego. She has been a blessing the last few months. I will begin pouring through this forum for suggestions and support but wanted to let you know I would never have looked at Lyme without your suggestions. So thank you again, it has been no easy task the last few months but we may have caught this early and that is because of you. ~Windy

Thanks Wendy, looking into it now. I have a call into my Dr and will stop the steroids until I hear back...horrible feeling with them...can't keep my head up...total paralysis rather than minor tingling....

I found a doctor in San Diego who can see me in three weeks. Her name is Dr Yang and seems to have a good reputation for dealing with Lyme. My next question (and it may be too late) is I am on day 4 of steroid treatments for the Bells Palsy. Have I done more harm than good? Should I quit taking them? My dosage is 6 10mg prednisone pills per day for 10 days...we are on day 4. The paralysis is getting slightly worse each day? I have an appt with my regular MD Monday but dont want to spend the next 4 days on the steroids if they are a bad idea. Thank you,

Thanks for all the responses. We live pretty close to San Diego and there seem to be a few LLMD's in the area. I will see how soon I can get in to one and my son is having his labs next week. Thanks for all the responses...this is all happening a little too fast :-(

Thanks, we are using the unflavored version of natural calm. His tics had gotten better with diet alone, so when they got worse it scared us a little. Also the spectrum complete is a flavored trial container. I did not purchase directly from Kirkman as they were out of stock so I unfortunately do not know what version I have, though it does not say Spectrum complete II..just spectrum complete. It has an expiration of 2/2012. DS really likes the flavor of it and we are giving him one tsp a day. Thank you :-)

Hi Everyone, I thought I would post over here from the tics forum. My son (6) has been having minor tics yet severe allergy symptoms for the past 6 months or so. The doctors are finally testing for Lyme though I am not sure which tests he is ordering. One is the western blot, yet another he said would need to be sent to another lab. Hopefully this is good. Also this past week I was diagnosed with Bells Palsy and have completely lost the left side of my facial muscles and taste. Is this a coincidence? Should I ask my doctor to test for Lyme or wait until ds results return? Also, a huge thank you over here too for finding this forum. There is such a comfort in reading your stories and knowing we are not alone in this :-)

Hi Everyone, I am wondering if anyone has had some experience with Natural Calm making tics worse? I am not positive but when I remove the natural calm (meaning my ds6 wont take it that day) the tics seem better? Also, our Kirkman Spectrum came today and he is taking that one just fine. We are hoping it helps :-) Thank you

Thanks for the responses. I did locate a few naturopathic doctors in the area. Many are very familiar with allergies but none with tics. I also found a DAN doctor just down the road from us. Dr Kevin Moeller. He is also on the list of those doctors that treat Lyme disease (this is interesting & scary as our vet wants to treat our dog for lyme because of joint pain, lethargy and loss of appetite?) This comes with a price tag of $400.00 a visit and he does not accept insurance and we have an HMO so it probably wouldn't matter anyway. Do you think that sounds right? and worth the cost? (of course if it helps our son get better any amount would be worth it). Thanks again ;-)

I am so grateful for finding this forum. Your posts have been such a comfort in navigating this new and scary journey. My name is Windy, I have an almost seven year old son who has recently developed tics. Over the past six months we had been searching for the causes of his chronic fatigue, circles under his eyes and general ill feeling most of the time. A few weeks ago he developed his first (there are more now) tic. It is a full head jerk, always on one side. They can be every few seconds some of the time. He has now begun rapid eye blinking, and a funny stretch of the mouth. Before the tics our doctor did a full slurry of blood work that showed no abnormalities except for an increase in his liver enzyme but that was not enough to warrant concern. He was also tested for 12 food allergies that came up empty expect the bloodwork showed he was definitely allergic to "something". We then tried skin testing and again we came up blank but three days later the tics appeared. Three days after that he suffered his first asthma attack. I have to believe there is a connection to it all and reading your comments certainly give me some things to consider. I am a little confused as where to go from here. We are trying some diet changes. What we noticed so far is the removal of gluten seems to be improving his energy level though now he seems a little more hyper than normal as well. Dairy had been previously removed due to a possible allergy with his brother. Something else we noticed was that in the removal of wheat we were substituting more corn than normal and that seemed to have a negative effect on him as well. I am considering the ALCAT test..what are your thoughts on that test? Is there one better? We have natural calm, though I am unsure of the dosage. We are currently giving him 1 teaspoon per day in two doses. I am looking for a multivitamin and had heard good things about Kirkman Spectrum Complete but they are reformulating and said it wouldn't be available for atleast 4 weeks. Is there another comparable vitamin? And lastly what type of dr should we be looking to see? I live near San Diego and there seems to be lots of holistic and alternative doctors in the area. I should also say we did see a neurologist who said his chances of developing TS were just under fifty percent, though there was no reason to continue to see him unless we needed to medicate in the future. I know this was very long, thank you for taking the time to read. I look forward to continuing to follow this forum :-)