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Fixit, It's not something that you would want to keep around - they think its going to be a big health problem here too. I met a lady once in the health food shop who had been ill for years, the drs put it down to depression and attention seeking. She went to France for a holiday and became very sick. They found Lyme and after alot of treatment she said she's getting better. There's a Dr here who is doing research on the best type of treatment. It makes you wonder how many people are on pills because the Drs cannot find a cause and all along it could be down to one little bug!

Cheri, PMed you, and you may get two as my cat has just hit the return button.

Hi cheri, It's interesting that you mentioned crohn's as the Dr wants to test dd for this condition. Am I right in saying that it's an autoimmune condition as it was the allergy specialist that was pushing for this. He also mentioned that crohn's patients don't have a good reaction to over the counter probiotics. He did mention a strange way to treat it - not nice Thanks Jules

The most impressive thing about the US Health system (I don't know if it's every state), it that I was taken sick and went to local medical centre (LA). The Dr prescribed me abx for ear infection and also probiotics. This is not done here, but I feel it's needed for a more pro-active way to look after your immune system. Probiotics are just taking off now but not fast enough. Also the DRs here are very narrow minded when you talk about candida and most state it's just a theory! Jules

Hi fixit I don't how they test in US, but this is a rundown of how one (private) hospital here does things. Hope this helps After a person becomes infected with borreliosis by a tick or other blood-feeding insect, the person may develop a resulting skin rash. Sometimes later a chronic rash can occur, with fever, headache and pain in the muscles and joints. Some infected people may not experience any noticeable symptoms at the time of infection. Without treatment, the symptoms can last for weeks or even longer. Sometimes serious complications may occur several years later including arthritis, heart problems, nervous system problems and/or neurological abnormalities. Lyme disease facts: •Lyme disease is caused by bacteria transmitted to humans via the bite of an infected tick •7 to 10 days after an infected tick’s bite, the first stage of Lyme disease begins with flu-like symptoms such as fever, chills, swollen lymph nodes, headaches, fatigue, muscle aches and joint pain •Neurological complications most often occur in the second stage of Lyme disease •Complications include numbness, pain, weakness, visual disturbances, and meningitis symptoms such as fever, stiff neck, and severe headaches •Weeks, months, or years after a tick bite, other problems, such as difficulty with concentration, irritability, depression, fatigue, muscle pain, memory and/or sleep disorders and nerve damage may occur •If a tick bite has not been noticed, these symptoms often get misdiagnosed as fibromyalgia, chronic fatigue or psychiatric problems •There is controversy over the testing of Lyme disease. Serological tests may not pick it up, leading to falsely negative diagnosis. Clinical diagnoses of borreliosis may be made but it is helpful to have other laboratory evidence of infection •The treatment outcome of Lyme disease depends on numerous factors including the duration of infection, the number of tick bits, the strength of the person’s immune system and his/her detoxification capacity Unfortunately the many common symptoms lead to many cases of borreliosis being undiagnosed or misdiagnosed. Many undiagnosed sufferers have been told that the symptoms are just in their heads. The standard investigations at Breakspear Hospital for borreliosis are: •Borrelia antibody evaluation by ELISA technique, which measures antibodies to the organism. •Polymerase Chain Reaction test for Borrelia burgdorferi, which measures the presence of the DNA – the chromosomes of the organism from the patient. •Lymphocyte Transformation Test for Borrelia burgdorferi (LTT MELISA), which, if the results are positive, demonstrates current active infection with the organism. •Borrelia burgdorferi IgG and IgM antibody evaluation by the Immunoblot/Western Blot technique, which detects portions of the Lyme disease organism. There are other investigations that may be undertaken. Tests of specific Lyme related lymphocyte reactions can be performed. The outer surface peptides often camouflage the organisms and reactions to these may be evaluated. We can also measure co-factor infections of Borrelia

Wendy, I fully agree - the gut health/immune system is the most important thing to heal and get working to the max. We also use B12 among other things. The differences between dds stool sample tests after gut healing is amazing, and it shows by the reduction in infections and fevers. Jules

Hi Dr T I think the Fungi issue is really important. When we have die off dd will respond with PANDAS symptoms which I'm convinced leads to a inflammatory reaction (maybe chemical changes in body) in the brain. We have the identical symptoms with strep and die off. Both different causes respond well to abx and advil. Our dr said thay it my be an allergic triggered reaction with the yeast die off. Jules

hi smartyjones, With a mutiple family affected I see only a predisposed genetic link, and then a infection/viral/immune system overload trigger. My old Dr that I had when I was a little one (many moons ago) would always say "you will get worse before you get better" as the body is fighting etc. The adrenal glands suffer alot when under stress and the whole body gets knocked offbalance I've seen the calm, then the storm, then the calm effect while trying to heal the most important thing - the immune system. I realise now that when we reached the healed calm I didn't keep on top of supporting the immune system which I think all these children need until they reach the point where they will grow strong ones without the full time support. Jules

Hi All Just wanted to update you with my PANDAS fight! DD has just finished her high dose abx and straight away her temperature is rising. I've had enough of watching her suffer and losing more precious childhood moments so I've rang the hospital and had a "moment" GREAT NEWS ......They agree that something is going on infection wise and the abx are not working. We are going into the ward Tuesday morning for tests, which I feel are a month overdue! I've armed myself with all the parents knowledge on the forum and I would like to say a MASSIVE thankyou for everyone highlighting to me all the issues found with PANDAS. I will keep you updated to treatment and anything that they find. Thankyou so much Jules and family

Hi We don't really treat Lyme in the UK, but some of the Drs here feel its a silent horrible condition that is rising fast. They don't have the tests in main hospitals that can pick up the unusual. I do see a big link that our children suffer with the unusual. It's a pity that we cannot get them tested for every related infection etc that all the parents are coming across. The UK now treat Lyme with IV abx and they still state it's hard to treat. Some of the private hospitals run a range of different tests as it can be so often missed here. Our Dan dr did say left untreated it could cause neuro symptoms in children. If anyone wants to know what the private tests are please let me know. Furthermore, a number of studies have revealed that as many as 50% of Borreliosis cases, confirmed by Borrelial DNA or Borrelial culture, were reported as negative when tested using the CDC's recommendations. In an interlaboratory comparison study of tests for the detection of B. Burgdorferi, by the College of American Pathologists, it was concluded that "these tests will not be useful as a screening test until their sensitivities are improved". It should be noted that a few patients may have infection without the presence of antibodies (seronegative), and this is often because of early antibiotic treatment or other medications, such as steroids. The serodiagnosis of late disease requires good specific clinical histories, and with some patients there may need to be a trial of treatment. Western blot ( immunoblot), ELISA (Enzyme-Linked ImmunoSorbent Assay) and PCR (polymerase chain reaction) can be performed on blood or cerebrospinal fluid (CSF), which is obtained via a lumbar puncture. However, in addition to the limitations of testing described above, antigen capture in CSF can be extremely elusive; reportedly CSF yields positive results in only 10-30% of patients cultured. Therefore, the diagnosis of neurologic borrelial infection should not be excluded solely on the basis of a negative CSF antibody analysis.

Hello Elizabeth, I'm from the UK also, and it is a wait and see game if you have the transient tics. If you need help with Drs who are aware of tests for strep etc then please let me know. As for the milk issue, I agree with Faith and CSP, but we went GF also. I did reintroduce milk and with a week our DD started with a mild stammer. It stopped when we went DF again. Keep his diet E number and chemical free as possible - very hard in this country, and you need to start all meals from scratch (even down to stock). All the things that Cheri suggested had a massive positive impact on my dd, and if you try Lloyds chemist they stock salts in big bags and makes it much cheaper! If you need any help at all with the UK issue, then please do not hesitate to contact me. I do wish you the best and please ask as many questions as possible. I have had so much help here which makes total common sense, but very little help in the UK. Try and keep a diary to of things that you think are tiggers so you can look back on them. Take good care Jules

Hi Michael, Thankyou for your comments. I think that we're on the same page with this issue. Her gut wall was previously damaged due to abx/yeast/allergy which has resulted in flora damage and the onset of small holes in the lining. This I feel has weakened her immune system and allowed infections to flourish and her body not fight them. The result is massive inflammation in body (and brain). Then given more abx and the problems increase, so we are now in a place of needing abx to fight the bad bacteria in her body but the abx are knocking her natural immune system to a dangerously low level. (hence the low white blood cells). I now feel that the toxins of the yeast are causing just as much damage as the infections with regards to inflammation in the brain. I've tried the advil route on a number of times and see a clear pattern that reducing the inflammation reduces the symptoms that I see in her pandas dx, and the toxic byproducts of candida. We have slipped backwards from 3 years ago after healing her gut, and are back with the leaky gut issue, toxin overload and the need for abx due to immune system damage. I think I relaxed too much after a long spell of no infections and didn't carry on supporting her gut health/immune system like I should of. It's a must to keep on top of gut health. We also used liquid 02 during healing the first time round in order to kill all fungus in the body. We had a great result. Until we resolve the ongoing infections (just don't know how without damaging the immune even more) I can only try to reduce feeding the yeast problem. Started the diet today and fingers crossed it will help. We think that going down the HBOT route may be a good idea as it saturates the whole body. Its very expensive but dh has quite alot of contacts. Focusing on natural anti-inflammatory methods/diet and immune support, and not going down the route of probiotics/medicine until her body can cope when we (hopefully) win the infection battle. I can get pure nystatin from the DAN ($100) but I need the Ped to see if it's becoming a systematic problem now. We also need to push Dr to look at the whole picture of other infections to rule everything out. If I come across some "wonder" yeast killing result I'll post and let you know. Thankyou for all your help, and I hope that you're feeling much better too. Jules

Melaine, More hugs sent from very afar. If you are worried about school then go with your heart, maybe he is far better resting at home and it gives you peace of mind and the chance to monitor him. I hope he improves. Fingers crossed for you. Jules

Cheri, We do have a foot spa that she loves to use, so will add the salt. She is DF so having trouble with Kefir, but we are starting the yeast free diet. I think at this time we can't really do much apart from not feed whats growing. DH wants to try HBOT as he used to be commercial diver and said he never felt healthier or more alert than after his sessions. Its the lack of alertness that I can see with dd when yeast is taking over. Hopefully the milk thistle will arrive soon to help. Once again many thanks for your help. Jules

Hi worried dad, Our country is run by two important views 1. Go by only what's inside a medical box, and never think outside of it 2. Money -- cheapest way to ease a symptom And I've just thought of a third reason, if we have the Drs like you have that want to help, well they will be ripped apart by the GMC Jules

Thankyou Cheri, The stress on her little body is a big concern and we see this with die off as she get a very high fever, sweating and shaking. Dh mentioned O2 therapy, but I need drs imput for that one. We tried acupunture to help with allergies a few years ago and dd was not amused to say the least. But maybe now that she's older we could try again. I have found some detox patches that you put on your feet overnight, but they do not mention an age range. I was thinking of homemade ones but have to be careful with reactions (bandaids make her blister). We are going to give the diet a try, starting slowly and supporting her liver. The abx are a must due to the type of infections in her kidney and even when we lower the dose we see high fevers again in days. Ped is looking at a long dose of nystatin after infection is resolved due to advice from allergy specialist, but as prescripton is full of chemicals, E's etc we are going the natural way. The diet that I've found states that she can have fruit, but the one we were given has ruled out fruit - very confused! I also use a probiotic that contains yeast (SB), for tummy upsets caused by abx, do you know if this is ok to carry on? Sorry for all the questions (you'd be very rich if you started charging) Thanks Jules

Hello, We are now having major problems with dds yeast issues due to almost 5 months on abx. I think the main problem is a leaky gut, and even a small amount of probiotics or yeast killer sets off such a bad reaction as the toxins leak into her system that we get a massive inflammatory response. The abx is a must at the moment due to infections and low white blood count. We have just tried Candida Clear (tiny amount), used salt baths, Lemon drink etc but she still exploded with tics. Tics stopped with advil and abx, but my main concern is she's now getting those drunk symptoms from the amount of yeast. DD is unable to even read at the moment as her focus has gone, and now she's just starting those flapping hand movements and eye control is all over the place. Cannot afford to see DAN yet, but last time we visited this problem the DAN supplemented to heal the gut and then attacked the yeast. I was going to do this again, but I feel that the abx will stop the gut healing process. I've ordered Milk thistle to support her liver, and I keep looking at the clay to remove toxins, however I have fears about this product without DAN imput and she's a small 7. We have been talking about the yeast diet now, and are going to slowly change her diet to stop feeding the little beggers, but I even think this will cause problems. Our main Drs do not believe in leakygut/candida so I'm quite desperate for some help. I know if we stop the abx we have an infection issue and at the same time the abx is knocking her immune system so we are going in circles. I just don't know which is the best path to follow which will be positive for my little one. Thankyou for any help

I had a big lol at the English/Welsh bit too! I think if they could blow themselves off England then they would. Saying that it's a lovely place to visit. Jules

Thankyou reactive and Vickie for all the information. I've tried all my usual sources and they're not available here. I will be contacting DAN Dr and Ped to see if they can help me with a supply, or do my normal import from the US route if they are unable to assist. However dds Ped is fast tracking sons treatment - he sees a link. As for the swabbing.........that will be left to me also, great hubby, but he runs from anything like this, he says his hands are too big!!!! On the plus side I came across urine test strips for oxative stress. When dd has a strep throat/infection her ph strips go awol. Ordered the new test strips (AHH more money leaving the pot!) Take care Jules

Thanks Vickie Yes we do have a very bad yeast issue.....nightmare to keep on top of. I'll have a hunt in the morning and see if I can get some here. They sound a better way for us to check rather than dragging the children to Drs. Thankyou for all the help Jules

Thankyou for posting such wonderful, positive news. Happy Birthday to your son, and I hope he has a FANTASTIC day! Jules

Are they like the Ph strips - or would I have to send them for a culture. I'm a bit ocd now - I check everyones temperature, when I see a couple of days low fever thats on the up I get them to the Drs. I see a pattern with the children now - sneezes, then a runny nose, followed by a fever. I just wondered if any other parent has a pandas child with a long running fever. Before all this started dd would be 36.6 and now she runs at 37.5 when not showing strep/tics. Its like even when she appears well, she is still showing signs of low fever. Has anybody else come across this?

I wouldn't be able to do the whole family here, if we asked the gp he'd have us all in white jackets We are due to see Ped very soon, and going to ask him about us all being tested. We do have a carrier in the house. Our son has a allergy nose issue which we fight with steroids/abx etc, but he's due to have some radical treatment in the hope of stopping allergies and infections. I have asked the GP before and I got the "strep's everywhere" comment - but he thinks PANDAS are a group of bears! Jules

Thankyou Vickie for posting that. I've not come across it and it explained lots to me. Do the Drs who carry out the IVIG test the whole family for strep and treat just before they start the treatments? Jules

I hope more use them, we seem to have children with added issues when they are knocked with this condition. My dds measles reaction was unreal, and couldn't find a single Dr who wanted to comment on it or more importantly treat her. The DAN had her on Vit A as soon as possible whilst supporting the explosion of new allergies. I owe her so much, she just seemed to know how to treat her, what to look for and how much dosage of supplements needed. We need to mix DAN Drs in with other Medical Drs at Hospitals. I have found some natural products to be far better than lots of main medicine. It makes alot of sense to balance the body and have everything working as near to normal, when taking on the PANDAS.