Back from LLMD dont know what to think

Drove 12 hours to take my daughter to Dr C for an expert opinion on Igenix result 41+ 39 ind. I just have to say I am so overwhelmed i really had hoped to hear it wasnt BB since her symptoms are so mild compared to everyone else. He wants to start treating her for babs because she has headaches without doing any tests. He prescribed Clindamycin 150 mg 4x a day and quinine 324mg a day. Well after reading the side effects of Clindamycin I am sitting here in tears and totally terrified. I have also this is out dated treatment for babs (which i dont think she has) I mean absolutley no fevers,chills etc. nothing. Has a hard time staying asleep, headaches, random mild joint pain. I am so scared I am going to make things worse for her such as cdiff etc. I am frozen I am scared to treat for something she may or may not have and something happening (had no idea how dangerous antibiotics can be) and terrified to do nothing and she gets worse like so many of you here. As I type this there are five deer in my yard god i just want to move to the city! On his paperwork it has alternatave therapy like natural fevers and scuba diving is this for real could it actually work how can it why if it did why would every one be taking these abx! I dont know what I'm even asking just totally losing it at the moment. Also is the eye test for toxicity for real he said she failed it what would any of you do? thx

I'm not sure it's sensible to treat for a disease your daughter may not have. If she isn't very sick right now it might be better to wait for the babs test results first, and these tests are supposed to be much more accurate than the lyme ones.

Good luck,

Kirsty

Hang in there Okmom!!!

Herbals are a good way to go if you are so inclined, but the abx that your daughter is being prescribed are not "out of line" considering she has tick-borne infections. And take it from someone who has been down that road too far - you don't want to not treat these infections!

Have you checked out the site for those who are caregivers to Lyme patients, LymeSpouse? (www.lymespouse.org/) It was originally set up to give support to those who were married to Lyme patients, but quickly added in all those who live with Lyme patients as they were bombarded with people!! I checked into the site when they were first starting out, and found their information to be true and correct at that time. It could give you some extra support talking with others that have been in your shoes.

There are also sites for kids with Lyme that your daughter could join if she were so inclined! Just have a look in our "New to Lyme" thread for those and other important links and info!


It's not an easy ride with this, but we can and do get through it!! We have to take high powered abx (or herbs) in order to actually kill off these incredibly complex bacteria, otherwise all we are doing is stopping them from replicating, leaving them to continue on damaging our bodies as soon as we stop taking those meds. Don't forget that kids are remarkable at healing!!

Detoxing is a key to a smoother path for healing, but so is a good "clean" diet, drinking plenty of water and exercising as is tolerated.

Just don't be fooled, just because your daughter isn't deathly ill, doesn't mean that she's okay. Band 39 is specific for Lyme disease, so it's not like she doesn't have the infection, it's just able to hide out so as not to be too obvious on the test, and she may have more than one strain of the bacteria.

Sending many (((((hugs))))) to you Okmom!!!

Thank you everyone for your support I really appreciate it. I am just not in a good place emotionally right now. I just was getting my head wrapped around the Lyme dx and all the info and treatment and was floored at the appointment with the llmd. He wants to treat Babs first and honestly of all the coinfections that was the one i was certain she didnt have.I want to trust him but I just cant.
I have started her on the Green Vibrance,Mag. Multi,probiotics foot baths and brushing. She was on 200mg of Doxy for 3 weeks and had tummy trouble the whole time now I am expected to give her 4 different ones! I have read practically every thread on here about the different clinics and just cant decide if they are scams or not. Does anyone know of a clinic that uses silver or fever therapy? Something about them just seem to make sense to me? But of course that is the problem I am so desperate I would pay anything for the "magic cure". Right now i am researching saunas and cant seem to even decide on that good god I think this has pushed me over the deep end:( I just dont feel strong enough to watch her suffer. Well thx for listening to the ramblings of a crazy person hopefully tomorrow is a better day. Wishing you all health and happiness.

Bars-yes I am talking about Dr C in Mo. we just saw him and got his protocol... just havent started still considering alternative treatments. My appt was'nt until Dec. but I got on their waiting list so when they had a cancellation they called me..if you are wanting in faster I would suggest you do that. He did not discuss alternatives with me at all but in this huge stack of papers he sent for me to read it has many alternatives. The ones that really stood out to me was using silver,natural fever,and scuba diving.

Although when I called to discuss these they recommend doing the abx first and then maybe one of these. But I dont know I live on a huge lake here in ok and there is scuba school 5 miles from here so I;m really thinking. I dont know much about it but I will tell you what it says........

Nitrogen may penetrate biofilms and nitrogen kills all germs....Humans cannot live if they breath pure Nitrogen do not attempt! However room air is 88% nitrogen and many patients have become symptom free after scuba diving. The high pressure exerted by water forces oxygen and nitrogen into tissues. Scuba tanks should be filled with room air and not Nitrox which has more oxygen. Hyperbaric oxygen may cause seizures.

Says to get certified and start slow with shallow dives like 30 feet and go slowly work up to dipper dives with experience never dive alone. Suggest to not dive dipper than 90feet below 99ft runs the risk of nitrogen narcosis. There are also Hyperbaric chambers you can dive in (seriously doubt anywhere around here although i havent looked) But be sure to always use room air!

Pretty interesting huh?

HI Okmom.. Yes, dr C comes highly recommended .. I have a friend here who has been going to him, and she is improved so much! And I have heard other people who knew people he has helped.. never have heard a bad thing about him..

My retired navy seal boyfriend.. goes into all this technical info on oxygen therapy.. he did deep dive schooling in panama city florida, Sometimes underwater for 30 days staturation diving etc.. live in a pod of some sort underwater.. anyway.. he knows it would help me. Just had not heard anyone else ever mention this as alternative to cure lyme. He calls it green gas.. I really have no idea ...but thinking I might go ahead and let him get me what he thinks. I was letting it all go in one ear and out the other.. LOL.. bad I know..

okmom, I'm also seeing dr c. I've been seeing him a little over a year and a half. I'm better than I was but still have a way to go. My brain was effected by the borrelia causing demyelination of the nerves. He keeps telling me to dive but I haven't done it yet. I would like to know how that went for yall and if it was worth the expense. Thank you for your time.

Hi okmom. How long would your daughter be on that protocol ? If it is short term it may be possible for her to suffer through it. That is a personal decision for you and her though. I am looking at something like that in the near future. I think if you daughter has headaches and joint pain, the disease is progressing. It can move quickly into neurological issues as well as cognitive impairment. It moved quickly from one stage to the next for me. I wish you both the best. Prayers for you both.

My heart goes out to you, I feel it. My whole family had lyme. I am the sickest and I'm the vector. I had it before I had my six babies ranging from age 15 mths to 15 yrs. My 11 yr old is the most symptomatic aside form myself, I am currently hobbled. I'm terrified for my children, I don't want them to feel Like this. I am desperate to get them to a great pedi LLMD. I will be praying for your baby, it will be okay. BIG GIANT HUGS TO YOU!

Please realize that the original post was made back in September of 2012 - well over a year ago. Some of these members haven't been seen for a very long time.