rowingmom

The link works just fine. The title of the paper is: The neuroprotective effect of olive leaf extract is related to improved blood-brain barrier permeability and brain edema in rat with experimental focal cerebral ischemia. Thanks for posting.

Glad to hear about improvements. Are all accupuncturists capable of addressing immune disregulation, or if not what type do you see? Thanks

I notice that Dr Jackson sells a skin cream containing methyl/hydoxy B12 and P-5-P, which he claims is absorbed more fully through the skin than through the digestive system. We use sublingual methyl B12, but oral P-5-P and L-methylfolate. Has anyone addressed methylation problems using transdermal supplementation, and if so did you find it more effective?

The Better Health Guy has a new blog post on methylation: http://www.betterhealthguy.com/joomla/blog/265-methylation He links to an interview by Sean Croxton of Underground Wellness with Dr Jackson of the Neurosensory Center of Charlotte. Sean has done a lot of great interviews lately with well known members of the Paleo movement.

Our LLMD feels that lyme is causing the autoimmune reactions to strep and other bacteria/viruses that we found in our 10 yo daughter, and that with treatment of lyme/coinfections the autoimmune response will settle down. Before we began lyme/bartonella treatment her PANS reactions (motor/vocal tics, repeating spoken sentences under her breath, rages, quick frustration, decrease in handwriting ability, increase in ADHD,sound/light sensitivity) would always take an upturn whenever she was exposed to infection (bacterial and viral). She has been treated with 2 Abx since June 2011 and is now having more normal responses to colds/flu etc, with fever, cold symptoms and then normal recovery (and not much of a PANS increase). We tried decreasing to 1 Abx after 4 months of treatment with 2, but ended up with a full relapse 3 months later. She is now back on 2 (rifampin/biaxin) and doing well once more (PANS behaviours have declined to almost nil). We are also using some homeopathic/herbal remedies that I hope at some point will recover her immune system so it can deal with infection properly without Abx. I am so sorry that your whole family is effected, but at least you have an idea of what may be going on. Lyme is spreading quickly and there will soon be alot of sick people and their doctors that have no idea what is going on.

My daughter's memory problems have improved significantly during treatment. Her rote memory has always been good - watching the piano teacher's hands while playing and convincing us that she could read music for two whole years, while she was only remembering which keys were played in which order. We found out after the pieces became more complicated. She picked up reading very quickly, even though she was still non-verbal at 4. Multiplication tables came easily. Her real problem was with executive function - remembering to brush teeth, get dressed, bring home homework, even to eat lunch at school. She had no concept of time passing and getting her out the door for anything was like herding cats. It is just during the last 6 months that I have not had to go to school every day to talk to the teachers, to see what needs to be done and to bring home forgotten lunch bags, homework etc. I am not nagging her constantly to do things that she should know to do for herself. Mornings are a lot easier now.

DD10 tested negative for babesia through Igenex, and our LLMD is not treating her for it. I guess this doesn't mean she doesn't actually have babesia, but she doesn't have any symptoms either. Her symptoms seem to be lyme and bartonella (for which she tested IND and IgG positive). As I posted earlier her CD57 started at 18 and she is now up to 27 with one year of treatment - it looks like we have a long way to go. Her symptoms have improved alot but she does relapse when taken off Abx.

Is the homeopathic GcMaf you use made by BioPure in the EU? Was there difficulty getting it shipped to the US? Thanks

My DD10 began treatment with rifampin/biaxin for bart/lyme in June 2011. After 4 months her bart symptoms - pick-like headaches, shin/sole pain, motor/vocal tics, cyclical IBS, fatigue, low tolerance for frustration/rage, poor concentration - had mostly resolved. Our LLMD was hoping to continue treating with bart herbals (A-Bart) and address lyme with biaxin/A-L. By Jan 2012 all of her symptoms (tics as well) had returned, so it took about 3 months for her to relapse off rifampin. The relapse was gradual and it wasn't until we were pretty much back at square one that the LLMD said bart was back. We resumed rifampin in Jan 2012 and her symptoms have improved greatly again. She has not had any side-effects to rifampin, not even urine discolouration, and her hair has actually grown thicker. The only thing I have noticed this time is that the dark circles under her eyes have not cleared up as they did the first time.

Sorry, but what do you mean by this. You found treatment did not help PANDAS symptoms?

On the other hand kids with an immunodeficiency may not react properly (with symptoms) to infection. Their bodies can not mount a reaction to infection.

I just had to watch it again myself: The part where she talks about sensory overload, especially sound, makes me think of my poor 5yo daughter screaming everytime she had to go to a school assembly. She could never sit through them.

There was a write up on her a couple of years ago in the Canadian Reader's Digest, and I think she has a TED talk as well if you search youtube. I thought her description of what she was feeling during her stroke was interesting. My Dad suffered a stroke and then head injury 15 years before he died at age 71. My Mom (an RN) along with various caregivers and us kids coming home on weekends to help out, managed to look after him at home for the duration. He was wheelchair bound, aphasic and tube-fed, but could read, type and understand what was being said. You could tell that sometimes his verbal processing was slow, but not all the time. I often wondered if he felt the change in his cognitive abilities. His stroke was on the opposite side from hers, so he probably did not have the expansive feelings she had.

Great articles, Thanks!

There is also the hypothesis that vitamin D disregulation is common in chronic infectious diseases. My DD10 (Lyme/bart) has an inversion of her 1,25 D and 25(OH)D levels, so we are supplementing 2000 IU/day. More info here: http://perfecthealthdiet.com/?p=421

Our LLMD uses LabCorp to test CD57 every couple of months. DD10 started at 18 and has slowly risen to 27. Some LLMDs feel that CD57 testing is not useful in younger children, but ours does use it. Who knows?

Please check out these posts on the Lyme forum about reactions or lack thereof to steroid treatment: http://www.latitudes.org/forums/index.php?showtopic=16393 My DD10 had all of your son's symptoms, was Dx with PANDAS/Aspergers, had high levels of rage and frustration, had the typical decline in handwriting ability (she even forgot how to hold a pencil - I had to go to Youtube to find a video describing pencil grasp before we could relearn it.) I never did follow up on the PANDAS Dx as it is not treated in Ontario, and headed south of the border to an LLMD. DD10 tested positive for bartonella and indeterminate for lyme. She is being treated for both, and we have seen great improvements.

You kind of have to wonder how many symptoms reported as side effects of Abx are actually herx symptoms reported by people who unknowingly have lyme. Skin sensitivity, reactive arthritis....

Lyme is capable of changing form when encountering a non-hospitable environment i.e. Abx. It is generally recognized to have three forms: a spirochete form, a cyst form, and an a-cellular form. Different Abx are needed to address these different forms. Different types of Abx are also needed to address any co-infections occurring along with lyme. Burrascano's Advanced topics in Lyme disease is a good introduction. http://researchednutritionals.com/FactSheets/Burrascano%27s%20Advanced%20Topics%20in%20Lyme%20Disease%20_12_17_08.pdf

We tried covering DD10's lyme with samento/banderol (10 drops of each 3x/day) and bart with rifampin for 2 months (July and August) of last year - she began treatment in April 2011 - but were not able to hold symptoms at bay. We had to go back to biaxin/rifampin and then added in A-Bart and A-L. After a couple of months recovery we tried to cover bart with A-Bart and lyme with biaxin (leaving out rifampin) but had another relapse after 3 months. We re-introduced rifampin and are now using biaxin/rifampin A-L and A-Bart. DD herxes with increases to A-Bart and A-L so the LLMD feels they are doing something, but we aren't having luck using only herbals yet. Perhaps her bacterial load is still too high for them to be effective.

I haven't used doxy, but I started on cat's claw and Japanese knotweed last June when my daughter started her treatment for lyme/bart. Immediately after starting I noticed that my skin was very sensitive to the sun. It felt like it was burning upon first exposure, but did not burn, this lasted about a month. Then after a month I noticed that every time something bumped my skin it felt as though I was being flicked with a rubber band, and the stinging sensation would go on for a minute or two. I also had ongoing muscle pain, hair loss and light sensitivity with my eyes (last summer was the first I ever used sunglasses, sun doesn't usually bother me). After a couple of months with each symptom, they seem to have resolved. I was fine in the sun today, although it isn't that strong yet.

Because my DD10's tics (motor/vocal) disappeared with Abx, I assumed they were caused by bacterial infection. She has been under treatment for lyme/bartonella with an LLMD for 10 months now. She is 80% better, the tics have resolved.

DD10 started plaquenil in Nov (100mg BID) and I was nervous too. It made her very emotional and we had to start at a lower dose and then increase. I think eye complications are more likely with higher doses and longer treatment times. Our LLMD said she used it to change intercellular pH and increase cellular penetration of the other ABX (biaxin/rifampin). So we were on 3, yikes! I happened upon a couple of blogs mentioning some LLMD’s changing opinions of plaquenil . The first opinion was that the reason plaquenil helps lyme symptoms is because it acts as an immune suppressant. I guess this is the idea for its use in treating symptoms of lupus. Immune suppression is not necessarily a good thing. http://plaquenil.net/ The second was just an opinion, but if you have read this blog you will find this doctor quite up on things: http://lymemd.blogspot.com/2010/01/lyme-2010-brief-update.html He states: “The benefits of Plaquenil are not clear. Rather than having an anti-cyst effect, it promotes cyst formation”. And “Sapi has now shown that Plaquenil induces cysts”. But if you check out all of his blog entries on “plaquenil” you will find that his patients usually reported feeling much better while on it. He appears to have used it regularly in 2008-2009: http://lymemd.blogspot.com/search?q=plaquenil I showed all of this to our LLMD and she decided to discontinue plaquenil. A funny thing, I have been using LLM’s charting method, and there was definitely an increase in symptoms 2 days after removing plaquenil. Was this her immune system responding once again? Before starting plaquenil the dark circles under DD10’s eyes had cleared up. Soon after starting it, the dark circles returned and even though we discontinued in the middle of Feb, they still haven’t cleared again.

The dosages are listed on the left hand side of the front page of the website: http://buhnerhealinglyme.com/ I have not tried revgenetics

An EM rash is indicative of lyme. I would not wait for a positive WB to begin treatment. If your doctor will not treat clinical symptoms (EM rash is one of them), I would find a LLMD that will.