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  1. 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!
  2. Cheri, PMed you, and you may get two as my cat has just hit the return button.
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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
  9. 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
  10. 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.
  11. 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
  12. 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
  13. 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
  14. 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
  15. 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
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