Kirsty has lupus, anti-c1q Anyibodies and hypocomplementmeic urticarial vasculitis syndrome (HUVS). She's has been suffering from this for 11years Kirsty was bitten when she was 12 and her life has never been the same since . we need to get her tested for Lyme disease she is getting more and more sick everyday, she is always in pain, sick and has seizures (fits), Kirsty spends 90% of her time in bed she has to have 24/7 care she can't be left on her own this is not a life for a 23year old. The nhs don't seem to know what to do. We really need help to get her to see a private specialist. any help, advice is more than welcome. Thanks for reading #alivebutnotliving
9th March With Kirsty Keep in Bournemouth she saw dr millward and wife vicky today they used the vega machine which showed kirsty does have lyme disease also showed she is really low on some important stuff that could be the reason for such chronic pain.
18th March Kirsty visited London to see Dr de Cruz the lupus specialist he told Kirsty that she has been misdiagnosis that he doesn't think she has lupus so for 7 years she has been given chemo drugs and lots of other damaging stuff she should never of had I'm so angry! He said she needs a specialist team of physiotherapy and rehabilitation omg if this is the case then dr Batley need to pay for the suffering he has made that girl go through if it's vital for her to have physio then she should of had it years ago not just now how could he have got it so wrong! How many other people are going through pain because of this doctor . Dr de Cruz told us to get the idea of lyme disease out of our head he said he thinks it's ehlers danlos syndrome and maybe pots syndrome. He wouldn't even look at dr millwards findings of lyme .. But these two things also get mistaken for lyme disease funny enough.. my heads a mash I can't even imagine how kirsty feels she said at least they might not just leave me now like they have with lupus. This is not good enough I don't know what to think and where to turn at the moment .. praying we get the result back that proves the NHS are wrong
23march Got bloods back from Armin labs for Kirsty Keep today hard to understand but she has chronic infection going on so now to get her seen in Germany
11 April Kirsty Keep had a live blood test today her blood don't look healthy but the doctor is confident there is things that can be done so we have hope!! She went in to the oxygen chamber again today as well . also the docter said he has no doubt in his mind she had lyme disease ... so now to travel to Germany tomorrow kirsty is seeing two doctor's out there to hear their opinion.
15 April Germany: The doctor said today Kirsty Keep is a very sick young lady and she has to be ready to fight for her life so it's going to be a long road ahead of being devoted to sticking to a health plan. she needs to get a bit better before treatment for viruses as she is to weak and wouldn't cope . So let's hope and pray this is the beginning of a better life for kirsty .
We're so thankful for the help you all have given with out everyone's help we wouldn't have been able to move forward like this you have all given kirsty some hope and you can't even imagine what that means so thankyou all so much xx
Lyme tests are negative because they are woefully inadequate. PLEASE have an accurate blood test done through IGENEX. You have neuroborreliosis, bartonella, and/ or a number of infections from the tick bite. It IS treatable, and I am so sorry you are suffering so much. My daughter is 25 and has been ill since the age of 4. She is being treated by a knowledgeable doctor for lyme disease. IGENEX testing will accurately tell you what infections you have.
Sorry you're feeling so bad, Kirsty. My daughter had chronic lyme disease for 12 years and had many of the symptoms you had. The Lyme tests are wrong 40% of the time, so if test negative that doesn't mean it's accurate. There's a specialty Lyme clinic in Augsburg, Germany (Borreliose Centrum Augsburg) that you might want to check out. We went there and though my daughter didn't see much relief, others at the clinic did. For private clinics, it's fairly affordable and they're knowledgeable about Lyme disease. Another clinic we attended in Topeka, Kansas (Hansa Clinic) did not use traditional medications but herbs and naturopathic remedies. Again, my daughter did not gain much from this but others did (one guy was in a wheel chair and stood for the first time in 30 years). For whatever it's worth and I know it's not worth much when you feel terrible every second of every day, you're not alone. You and your loved ones just need to keep looking, probably outside the UK if you can't find a doctor who won't at least seriously consider Lyme as a possible cause. There's an organization called ILADS that lists doctors who treat Lyme. Best of luck and prayers with you and your family. I know how hard it is.
Really sounds like Lyme Disease. My daughter and I both have it and are in treatment. Getting better slowly. The Igenex test (Western Blot processed at Igenex lab) is the most accurate test right now for Lyme. There is a clinic here in California called Gordon Medical Associates. The place is absolutely packed with people from England. Many spend 3 months here and do intensives at the clinic. Please contact me if you want to discuss any of this. Lyme is so misunderstood and underdiagnosed. So many people are suffering. Best of luck to you. With treatment, you will find some relief. It is a slow process, but there is hope.
PLEASE find a doctor that's willing to treat you for Lyme disease. My tests kept coming back negative, despite having hellish symptoms--visual hallucinations, Bell's Palsy, agonizing bone, muscle, and joint pain, ect. I finally found a doctor willing to believe me and treated me despite the negative tests. After several months of antibiotics and nearly a year later, I am finally approaching recovery. However, I would recommend looking into herbal antibiotics as the pharmaceuticals have done significant damage to my stomach. My heart breaks for you! I will keep you in my thoughts and prayers.
There is a private clinic in germany that does innovative stem cell transplants and also specializes in dealing with Lymes and other diseases that are considered (incurable). One of my friends was bed ridden and had Lymes for almost 30 years, he is now 100% cured now that he had the stem cell treatment...Please contact them and see if you can get consultation! http://en.infusio.org
Greetings. I am a neuroendocrine researcher and prepare formulas derived from recombinant cell signaling factors and have a trio for chronic lyme, chronic fatigue and fibromyalgia. There is also another which we developed back in 1995 for people with depressed/overexpressed immune systems, such as for lupus. We have additional formulas for Parkinson's and M.S., but those would not have potential applications for you. While clinical studies have not been done yet we have numerous anecdotal reports including with the integrative doctors who use our products. They are not pharmaceutical drugs. I would be happy to provide 1 bottle of each for you to try, not together initially, but separately because without knowing more details I am not certain which would be of greater benefit, and it is possible they would be better together. They are non-prescription. Please let me know if you're interested. Paul P.S. I suspect you don't have lyme, but it could be another bacteria such as bartonella. That said, the cell signaling pathways often overlap so there are cross benefits.
PLEASE GET TESTED FOR LYME, again!!! NORMAL LYME TESTS ARE ALMOST ALWAYS NEGATIVE. lyme imitates LUPUS. Please SEEK AN LLMD AND GET TESTED THROUGH IGENEX. I HAVE HAD LYME for 2.5 years. I am 24 years old. If she has co infections like bartonella is causes SUICIDAL THOUGHTS AND ACTIONS. only a LLMD can diagnosis Bartonella. PLEASE DONT GIVE UP JUST YET. We LOVE YOU.
So so very sad. Be aware that traditional labs are notoriously inaccurate when it comes to Lyme testing. Test with Igenex.com They know what they are doing. Additionally, studies show that whole leaf stevia extract is more effective than antibiotics at killing lyme. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4681354/ Sending good wishes your way.
Please please, get a test from IGENEX, pollo alto California ...they will send you a blood draw kit fed ex ...have your dr draw it and fed ex it back takes 3 weeks..if they say you have Lyme then you have Lyme...get 6 to 8 weeks rocephrin or cerferoxin IV....you will get better...but you must do this step...many test are negative because we don't have sensitive enough test...good luck , I want to hear you did this ....it will save your life...doctors are in denial about Lyme ...
Vitamin C was championed by Linus Pauling, a very famous chemist who is the only person to win 2 Nobel Prizes unassisted- one for chemistry and the other for peace. Humans and just a few other creatures can not make their own Vitamin C. We and they have to consume it. The vast majority of other creatures makes vitamin C, and when they are battling an infection or virus, the concentration in the blood skyrockets.
I'm interested that a doctor thinks EDS is involved- to my mind it could well be the EDS-pots- mcas combination that is being seen frequently now...certainly the throwing up and not tolerating food is very indicative of MCAS - Mast Cell Activation disorder.....I would certainly suggest that you get thoroughly checked for all of these before heading to the USA....please feel free to contact me via Facebook for more information, my 21 yr old has the three and I know all the right Drs you need to see etc ....I have come across a number of people who have. Lyme and eds/pots/mcas so you might have them all....good luck x
Hi, I am sorry to hear this and hope she gets better. Im not a doctor but I do take an a very keen interest in medicine and I was just wondering if she had ever been tested for Tick Borne Encephalitis? Symptoms can include fever, malais, anorexia, muscle aches, headaches, nausea and/or vomiting, changes in mental state. It may be that because your daughter had not been given the vaccination for this then that led to it getting worse and her immune system would have been impacted significantly perhaps beyond 100% repair. If you haven't I would recommended getting tested for this. Wish you well
Hello, I felt I needed to comment here. I was in very bad shape, and I'm going to share my story here, which is long. Today, I am stinging with bees. It might sound crazy, but it has helped many. Prior to treatment, I was in horrific shape and wanted to die daily. Please feel free to join my group, "The Bee Venom Miracle for Lyme Disease." You don't need a Lyme test diagnosis to treat infections. Much love to you and your whole family. ♥ After many years of struggling witha hidden illness, being called fibromyalgia, I was informed in November of 2011 that I been exposed to Lyme disease and its co-infections, the worst of which are bartonella and babesia, a form of malaria. Some doctors in Western medicine gave different names to what I was experiencing, like Sjogren's syndrome and secondary adrenal insufficiency. At this time, my medical doctors and practitioners concur with the diagnosis of parasitic illness that came from Chinese medicine. I could examine the effects of this debilitating condition just by looking at the years between 2009 and the time of my diagnoses. That would provide a limited view of the impact of years of struggles, delayed diagnoses, and the inferior treatment I received.It would not show how great of an impact this has on my immediate and extended family either. It is the purpose of this writing to show how this illness and other circumstances have wreaked havoc that is even unbelievable to me. I have struggled with different things medically my whole life, but after a bite in 1992, my life took an unexpected turn. The effects have been devastating and continuously felt by my family and me. In 1995, after experiencing severe muscular pain accompanied with flu symptoms, I was officially diagnosed with fibromyalgia syndrome. A rheumatological exam was performed, and I was told that blood tests were done to rule out other autoimmune conditions. It was explained at some point that the trauma of motor vehicle accidents along with viral exposure and my friend's suicide had likely triggered the condition.Although I had an open personal injury claim in 1993, ultimately, the conclusion reached was that the medical record supported a possible diagnosis prior to my motor vehicle accident in late 1993. To add to my medical nightmare, the majority of the treatment that had been billed as personal injury was rejected by my auto insurance company, which fraudulently denied my personal injury claim. No one informed me that bills had not been paid until thousands of dollars of debt built up. Because my insurance company denied my payment and doctors could not state that my fibromyalgia was caused by the last accident I had, I was left with virtually no settlement money to contend with my aggravated condition, which was greatly exacerbated by that accident. My condition was much worse, but the documentation had not made that distinction well, and all monies were used to pay off the huge unpaid debt. I found out about the medical fraud years later when the company was compelled to refund my withheld personal injury benefits in 2002. A diagnosis normally brings with it some peace, providing the knowledge of what steps need to be taken to attain wellness. This diagnosis did not help in that way, because I was told there was no known cause or cure. I had widespread body pain, the necessary 11 of 18 tender points to make a diagnosis, severe nausea and vomiting, flu symptoms, and restless legs syndrome. I was on Medicare when first diagnosed, which limited me in which doctors I could see. Even when I did find providers that would see me, there was a co-pay for my visit and the treatment options consisted of prescription medications. While there was an acknowledgement of this new illness, which minimally informed me that it was real and not an “emotional” disorder, the treatment used anti-depressants, some injections, and involved counseling. That counseling required me to purchase a secondary insurance plan, and I was already on a fixed Social Security disability income at the time. I believe the cost of that plan was nearly $100 per month at the time. Now, I pay $212 on a monthly basis. Rather than finding the underlying cause and developing a course of action from there,a plethora of drugs were tried that did little other than to cover my illness.What I did not know is that underneath all of those medications provided by fragmented health care and many specialists is that I was very ill with an actual disease that would not be identified for years to come. As a consequence, I was forced to leave school in 1995, and all money and energy had to be devoted to fibromyalgia and feeling the best I could with no actual treatment. In 1996, my health improved substantially for unknown reasons, but I was still unable to work or go to school like others.Two years later, I got married and decided to have children. Social Security told me not to legally marry, b
Hi there, Kirsty and family. So sorry to hear of your suffering. Has brought tears to my eyes as sense your anguish, I am an Empath and Holistic Coinsellor / Ex-Nurse. I am forwarding you these contacts ad I feel a Metabolic Doctor with Metabolic Therapy may be able to help you, to help build up your Natural Immune System with Maximum Nutrition / Nutritional Therapy and Detoxification and other treatments. Please contact Health Researcher Author Phillip Day from Credence International / CTM / Campaign For Truth In Medicine on:-01622-832386 or visit www.credence.org. He does lectures, provides Health Suppliments and Books etc and has a list of Private Medical / Alternative / Complimentary Doctors. Also please consider contacting The Gerson Group who do similar www.gersonpress.org. Founded by Max Gerson and now his Grand/daughter Charlotte. Also specialising in Metabolic Boosting and Reversing the negative effects of Degenerative Diseases / Conditions including Cancer and Motor Neurone / Multiple Sclerosis / Heart Disease and many others with often dramatic and life saving results. I am not promising you a miracle cure recovery but I know these Therapies have high success rates for many people when all else has failed and it makes sense. Holistic or Wholeistic means to treat the Whole Being, Mind / Body / Spirit and look at the Causes of Illness to get to the root of the problem not just treat the Symptoms like Pharmaceutical Treatments often do, ignoring the Causative effects only too often. Did you know that Pharmaceutical is derived from the Greek Word Pharmagia which actually means 'To Poison' and your body actually reacts to Pharmaceutical drugs as Poison even if subtly in some cases, more severe with side effects in others. Holistic means treating the body in Harmony with Nature so much more gentle on the body and mind. Altho even Holistic Treatments need to be handled with care / respect. I am not knocking all Pharmaceutical treatments, just sharing my awareness of the dangers of side effects and lack of success rates all too often and yet can work o.k sometimes if used alongside Complimentary / Holistic Therapies / Remedies etc. Please consider this. Also looking into boosting your Immuno System / Cleaning out the Toxins / Boosting your Natural Biorhythms' with Colloidal Silver and Liquid Oxygen too. They both Purify the Blood with no known side effects if taken properly as recommended, (usually 1-3 Teaspoons per day). Phillip Day sells stuff like this also some Private Health Stores in Towns / Onlne etc. If you need anymore info please contact the above or your local Natural Health Store or Inbox Me or visit www.patrickholford.com, (he is from The I.O.N / Institute Of Optimum Nutrition). I hope this helps you and may God and The Angels watch over you and help heal your sickness/es. It is phrophesised in The Book Of Enoch, The Bible and by Spiritualists as follows, "There is a Natural Cure For Every Illness On This Earth." May Gods blessings help you find it and Angel Wings. Love and Light. Renee. Xxxx