Question for Rowing Mom

Thank you so much for the information you have posted on your daughters progress and treatments. Would you please tell me what time of day you administered C.S.A. to your daughter? I am introducing it to my seven year old tonight. I am hoping this helps with my son's cognitive/executive function that has been diminishing with his diagnosis of Lyme/Bartonella/Babesia diagnosis.
Thank you so much for your time!

Hi Rowing Mom, I was at a budget meeting or would have responded earlier. Thank you for responding to my question. No, we have been to several LLMD's, but not all are created equal. Currently, my son is on Kid's Focus Factor (2 q.d.), Bactrim b.i.d., Hyland's #8 Magnesium (4 qhs), and Malarone b.i.d., and tonight we added C.S.A. and Sleep Ease (Woodland Essence). We do not have a detoxification program for him as the present LLMD hasn't suggested any- I will be calling her tomorrow. We do have him on VSL #3 probiotic two to three times a week whenever it does not cause constipation. We try to eliminate gluten, but are not always successful. He is an extremely picky eater. He has not been on dairy for a year and a half.
My entire family as Lyme/Bartonella/Babesia (myself and my husband 8 years undiagnosed) and unfortunately, I was the one who gave it to my son in utero. It has been a long hard road to get a correct diagnosis for any of us. But, I think we finally have the resources we need to get better. Your forum comments have given me hope. I can't tell you how much I needed to see that. Currently,we live in New England and will be moving to the Maryland area by this summer and already have a reference for a LLMD that was referenced in the movie, "Under Our Skin."
I had a Neuropsychological Assessment completed on my son Oct. 2015 and the Neuropsychologist stated she could not definitively tell me he could be diagnosed as ADHD/Anxiety/OCD as their should have been a pattern that they would all connect and his test scores were not consistent. She said she would alter her evaluation so he would be able to obtain an IEP for school. His wonderful teacher has been working every step of the way with me regarding his issues at school. He has little self control/low executive function/sensory issues with socks just starting at age seven (same sock brand he has used his entire life)/Mild Anxiety/Mild OCD/and Mild ADHD/and low self esteem. I had not thought of PANS, but his behavior issues started at age five after he had his MMR shot administered. He also had his tonsils/adenoids out months before that. At age six, his kindergarten teacher stated he was losing his short term memory. She suggested I have him tested for Lyme. I explained to her that I had him tested every year prior and always turned up negative. What I didn't know was they tested him with the ELISA test. We finally found an up and becoming LLMD doctor (August 2014) at six years of age who started him on antibiotics (Amoxicillin and Zithromax) and he was on this for a year. He seemed to do better with short term memory, but his sensory issues/adhd/ocd/anxiety/little self control in clsss still progressed more than before. The LLMD stated this is because he has had these neurological lyme symptoms for years. At seven he was also diagnosed with Convergence Insufficiency. He sees double in his right eye even with glasses. But, I do believe his treatment is helping this, but we will find out at the end of this month when he has his eyes retested.
I have seen homeopathics/Holisitic practitioners/Chiropractors/Polarity specialists/LLMD's-you name it, and some have helped him. I have been with our current LLMD for six months and she has worked with Dr. J__nes. She follows his protocol and am really hoping she is the one doctor that will help us attain a "healthy status," again. Like you said, this is not a sprint. But, you have achieved results faster than I have read about.
His teacher now understands it is Lyme because no two days are consistent. My son's current teacher called one day and said, "What are you doing differently with your son?" I said, "Why?" She said, he didn't need a movement break and he was so, "On," in class she retested his reading level. Usually, he has to have movement breaks to release pent up energy. Well, she tested him and he was behind in reading at the beginning of the year and now he is the more advanced of the student readers. Thank you again and I will keep you posted on how my son, myself, and my husband do on the C.S.A. over the next couple of weeks. I will have to order the rest of the protocol as I only ordered the C.S.A. and a few other (Larch, Linden, Sleep Ease) from Woodland's Essence). I sincerely thank you for taking the time to respond and comment on this forum. It is greatly appreciated by myself and my family. Thank you! So happy for your daughter!

Detoxing is a must. I learned that one the hard way. Please do not wait for a doctor to tell you to detox. There are good suggestions on detoxing in our "New to Lyme?" thread, plus there are many good suggestions on this site: www.tiredoflyme.com/detox-methods.html

There are many other detoxing methods you really do need to have your son start on. Here is something that I wrote up to explain all that I did in order to heal from these infections since I had already had one treatment failure due to not doing these things:

With the experience that I had personally, and what I've watched others go through, here is what I believe needs to happen for many of us to heal:

a)Detoxing - gene mutations, mold exposure and multiple tick-borne infections can all prevent us from detoxing well, but we must be able to get those toxins out of our bodies. I have not had any of the gene mutation testing done, although I do seem to have the same kind of issues as those that do - so I figured it was best for me to assume that I did and work to get my body to detox much better. It took a lot of diet changes as things with my body changed, I used a foot soak daily, dry skin brushing, making sure my bowels moved at least once a day (sorry if it's TMI!) pushing myself to drink at least 64 ounces of lemon water each and every day, liver/gall bladder flushes (all natural), oil pulling, taking activated charcoal and keeping the amount of stress in my life at a bare minimum. You can find some really good detoxing suggestions in the "New to Lyme?" thread that sits at the top of the forum:
www.healingwell.com/community/default.aspx?f=30&m=1606610

And this is another good list of possible detoxing routines: www.tiredoflyme.com/detox-methods.html


b)Supporting the body functions/systems. We have to have the body working at it's peak performance to heal from something as devastating as these infections. Supporting any gland, organ, body system that is struggling will allow the body to switch it's 'concentration' from just trying to function over to healing.


c) Raise the immune function. Many legitimate Lyme researchers now believe that it's the lowered immune function that determines who gets chronic Lyme and who heals right away. We already know that Lyme lowers the immune function and when a person has Bartonella and/or Babesia, the immune function is further compromised, so to heal we must raise our immune function.


d) Lastly, oddly enough, are anti-infective treatments. Many of us have experienced treatment failures​ or set backs​, so we can see that the treatments aren't the only thing we need to have - there has to be more to the equation, but anti-infective treatments are very important!! Lyme bacteria are one of the most complicated bacteria! ​Although it takes only hours or days for most bacteria to replicate, Lyme bacteria only replicates in the body every few weeks.​

No. I had given him a homeopathic supplement with chamomile and Valerian root with hops.

Thank you Traveler for the recommendations. My husband and myself already have autoimmune diseases due to Lyme (at least that is what the LLMD thinks). I have Hashimoto's Autoimmune Thyroiditis and my husband has Lupus. I take Armor Thyroid for my autoimmune and my husband is still waiting to be retested before he sees anyone about it.

That's wonderful news about your Hashi's....you have given me hope! So, we tried the C.S.A. and my husband immediately herxed from it. He said he felt out of sorts, said looked as if the road went up in to the sky while he was driving, strange mentally, exhausted... Really strange. He says of all the antibiotics he has taken for the last year and a half, he said he feels the worst today after taking C.S.A. I am taking it as a good sign. My seven year old son stated his right thigh and from inside of his groin to his hip was hurting. Could be growing pain or reaction to C.S.A. There is a herx of sorts going on with him I believe. The teacher stated my son was "withdrawn." When I asked him about it, he said, "I was content- I just wanted to look out the window." I think he is doing better now that he is off Mepron and on Malarone. We are ordering some detox supplements. He is taking a liver detox as of a couple of days ago. Thank you for all of your help! I will keep you posted.

My son just said today his entire right leg hurt. I will have my husband reduce his dosage...he started off with a pretty high dosage. I did use it once, but had the worst brain fog in a while. I am taking Bicillin and just started and want to see if I respond with this first before I add something else. But, I intend to start it soon. Since taking Mepron, my SOB came back. What type of detox program helped your daughter?