Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 Re fruits - the sweeter it tastes, probably the higher up on the sugar scale wouldn't you say? Re: Questions As for yorgurt - try to find goat yogurt. Yum. It is much more digestible than yogurt made from cows milk. Really good stuff for you. I often have this for breakfast, rotating with eggs and a green drink I have. I'd be curious to hear more on millet as well. Sometimes I treat myself to millet (whole milet cooked for 30min) then topped with a few blueberries and flax seed oil. > > Firstly, thank you everyone for being so kind and patient with me. Food > is my life, and its so depressing having to think all the time about > stuff I can't eat. So after I write this I'm going to go on a recipe > hunt. > > I think I am starting to resign myself to do this diet thing 'properly', > although I'm still so confused on what 'properly' is. So I have some > questions, if anyone could offer any information and/or experiences I > would appreciate it. > > 1. Anti-fungals, probiotics etc: > I'm currently taking sporanox tablets, inner health plus capsules and > isodine pessaries. I'm also taking silica once a week and 'candida > antibody' drops as prescribed by my doctor/homeopath. What's the word on > these? Unfortunately I can't afford to buy any other anti-fungals and/or > pre or probiotics right now, my fiancé and I are surviving on only one > income as we rotate studying and work, and money's pretty tight. > I eat a lot of fresh garlic (lucky my fiancé likes garlic a lot! as a > natural anti-fungal - is there anything else this cheap? > > 2. Plain Yoghurt > I thought this was an absolute yes, lots of good flora etc etc, but its > made from milk (and I have one really yummy greek style one that also > has cream in it) - ? > > 3. What can we eat? > Thank you everyone for providing links to pages (which I'll go look at > now), but there does seem to be conflicting information everywhere I > look on the net. The only consensus seems to be: meat and vegetables > good. But then there's conflicting reports over which meats (I know > processed, eg ham and bacon, are bad, which is such a shame). > So what about nuts? My doctor/homeopath said cashews, almonds, > macadamias and brazil nuts are good, peanuts, pistachios and walnuts are > bad (because they split and can grow mould. Having thought about her > prescriptions for food, it seems she was concentrating more on what > grows mould than on what converts to sugar. Eg she said corn and > potatoes okay but no eg tinned tomatoes or dried herbs cos they could be > mouldy. Any thoughts?) > Are there any vegetables (apart from mushrooms, which I've sadly cut > out) that are deemed 'bad' someone said carrots were high in sugar, > which is probably why they're my favourite vegetable snack (I don't like > any other vegetables raw). Also what does cooking vegetables do? > Anything bad? > > 4. Grains > Are any allowed? I was thrilled to find this beautiful breakfast cereal > that contained no sugar or dried fruit, but its ingredients are: rolled > barley, rolled oats and rolled triticale, sunflower kernels, coconut, > sliced almonds, linseed and sesame seeds (hence has LSA - something > highly recommended to me by several naturopaths/doctors/homeopaths - is > there consensus on this? Apparently the combinations forms a protein, or > something?) > > So, > 5. Breakfast > So this cereal is 'bad'? If Vita-Brits (my other 'allowed' cereal) is > also a no-no, what does everyone eat for breakfast? Surely not plain > eggs everyday? Toast and cereal are my standard breakfast items.. meat > for breakfast seems strange (unless its bacon - mmmm, bacon - what do > you eat? > > 6. Carbohydrates > Just wanted to check - no carbohydrates at all? So no potatoes, corn, > rice, pasta, yeast-free bread (which I managed to track down, and even > make myself!) etc? > What about millet? My mum heard somewhere that it was good for candida, > not sure why (she reads a lot of silly women's magazines) so I bought > some millet flour to make bread with, figured it was better than white > flour. This is bad? > > Whew! Sorry that was so long. Thanks to everyone who managed to read > through it and an even bigger thank-you to those who can help me with > some (or even all!) of it. > > Best Wishes, > > Nice . (Its morning here now. I always feel better in the > mornings) > > > --- > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system (http://www.grisoft.com). > Version: 6.0.529 / Virus Database: 324 - Release Date: 16/10/2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 That sounds nice - thanks Unfortunately the problem is not really sugar withdrawals (esp. as I'm still technically eating fruit and have discovered stevia) but how to fill myself up. I don’t like salads and if I cant eat carbs it looks like I'm eating meat and veg for every meal - boring and expensive.. Re: Re: Questions - Here's something that might help get through the sugar-withdrawl hump. Buy some plain yoghurt and strain it through cheesecloth in the fridge overnight. You'll end up with something the consistency of cream cheese. Add a few drops of vanilla extract and sweeten to taste with Stevia. Yum. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 Ya, probably not so good. It’s fruit sugar, and concentrated at that. I wouldn’t recommend it. When I cheat, I try to stick with whole foods. Re: Questions As for yorgurt - try to find goat yogurt. Yum. It is much more digestible than yogurt made from cows milk. Really good stuff for you. I often have this for breakfast, rotating with eggs and a green drink I have. I'd be curious to hear more on millet as well. Sometimes I treat myself to millet (whole milet cooked for 30min) then topped with a few blueberries and flax seed oil. > > Firstly, thank you everyone for being so kind and patient with me. Food > is my life, and its so depressing having to think all the time about > stuff I can't eat. So after I write this I'm going to go on a recipe > hunt. > > I think I am starting to resign myself to do this diet thing 'properly', > although I'm still so confused on what 'properly' is. So I have some > questions, if anyone could offer any information and/or experiences I > would appreciate it. > > 1. Anti-fungals, probiotics etc: > I'm currently taking sporanox tablets, inner health plus capsules and > isodine pessaries. I'm also taking silica once a week and 'candida > antibody' drops as prescribed by my doctor/homeopath. What's the word on > these? Unfortunately I can't afford to buy any other anti-fungals and/or > pre or probiotics right now, my fiancé and I are surviving on only one > income as we rotate studying and work, and money's pretty tight. > I eat a lot of fresh garlic (lucky my fiancé likes garlic a lot! as a > natural anti-fungal - is there anything else this cheap? > > 2. Plain Yoghurt > I thought this was an absolute yes, lots of good flora etc etc, but its > made from milk (and I have one really yummy greek style one that also > has cream in it) - ? > > 3. What can we eat? > Thank you everyone for providing links to pages (which I'll go look at > now), but there does seem to be conflicting information everywhere I > look on the net. The only consensus seems to be: meat and vegetables > good. But then there's conflicting reports over which meats (I know > processed, eg ham and bacon, are bad, which is such a shame). > So what about nuts? My doctor/homeopath said cashews, almonds, > macadamias and brazil nuts are good, peanuts, pistachios and walnuts are > bad (because they split and can grow mould. Having thought about her > prescriptions for food, it seems she was concentrating more on what > grows mould than on what converts to sugar. Eg she said corn and > potatoes okay but no eg tinned tomatoes or dried herbs cos they could be > mouldy. Any thoughts?) > Are there any vegetables (apart from mushrooms, which I've sadly cut > out) that are deemed 'bad' someone said carrots were high in sugar, > which is probably why they're my favourite vegetable snack (I don't like > any other vegetables raw). Also what does cooking vegetables do? > Anything bad? > > 4. Grains > Are any allowed? I was thrilled to find this beautiful breakfast cereal > that contained no sugar or dried fruit, but its ingredients are: rolled > barley, rolled oats and rolled triticale, sunflower kernels, coconut, > sliced almonds, linseed and sesame seeds (hence has LSA - something > highly recommended to me by several naturopaths/doctors/homeopaths - is > there consensus on this? Apparently the combinations forms a protein, or > something?) > > So, > 5. Breakfast > So this cereal is 'bad'? If Vita-Brits (my other 'allowed' cereal) is > also a no-no, what does everyone eat for breakfast? Surely not plain > eggs everyday? Toast and cereal are my standard breakfast items.. meat > for breakfast seems strange (unless its bacon - mmmm, bacon - what do > you eat? > > 6. Carbohydrates > Just wanted to check - no carbohydrates at all? So no potatoes, corn, > rice, pasta, yeast-free bread (which I managed to track down, and even > make myself!) etc? > What about millet? My mum heard somewhere that it was good for candida, > not sure why (she reads a lot of silly women's magazines) so I bought > some millet flour to make bread with, figured it was better than white > flour. This is bad? > > Whew! Sorry that was so long. Thanks to everyone who managed to read > through it and an even bigger thank-you to those who can help me with > some (or even all!) of it. > > Best Wishes, > > Nice . (Its morning here now. I always feel better in the > mornings) > > > --- > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system ( http://www.grisoft.com). > Version: 6.0.529 / Virus Database: 324 - Release Date: 16/10/2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 hi , I must say that when I first started rearranging my diet I was a hater of fruit, salad and vegetables. But there are amazing things out there to do to your salads! Salad dressing: olive oil and lemon. sometimes I put herbs in there like fennel or basil and oregano - Mrs. Dash. Safflower oil, sea salt and cinnamon for an interesting taste. NUTS! ooh yeah - they are good too! And sea weed; wakame or kelp. Stay away from dulse right now - you probably wont like it yet. Just today I had a wicked salad: romain lettuce with poached scallops, shrimp, peas, broccoli and egg plant. - the dressing was olive oil, lemon and caraway. oooh soooo goood! Tuesday for lunch I had spinach, romain, suey choy and then I baked eggplant, onion and tomato with some olive oil! Good lord I almost died and went to heaven, it was so good. Lots of flavor in this! There is no boring in my salads. ** I don't ever buy ice berg lettuce and cucumbers anymore because that is all you get in restaurants! And I usually (if I know I will be eating out), I will carry a zip lock bag filled with seeds, nuts, sea weed and seasoning to pour on top of those lame restaurant salads. Oh yeah, canned tuna and salmon are great too! But make sure they are sodium free. ) Simon wrote: >That sounds nice - thanks >Unfortunately the problem is not really sugar withdrawals (esp. as I'm >still technically eating fruit and have discovered stevia) but how to >fill myself up. I don’t like salads and if I cant eat carbs it looks >like I'm eating meat and veg for every meal - boring and expensive.. > > Re: Re: Questions > > - Here's something that might help get through the >sugar-withdrawl >hump. > >Buy some plain yoghurt and strain it through cheesecloth in the fridge >overnight. You'll end up with something the consistency of cream >cheese. >Add a few drops of vanilla extract and sweeten to taste with Stevia. >Yum. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 OMIGAUD Penny! that is soooooo goood. When I first ate this, I cried, knowing I couldn't have it all the time - so I could enjoy it. Penny wrote: > - Here's something that might help get through the > sugar-withdrawl > hump. > > Buy some plain yoghurt and strain it through cheesecloth in the fridge > overnight. You'll end up with something the consistency of cream cheese. > Add a few drops of vanilla extract and sweeten to taste with Stevia. Yum. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 So why can't you have it all the time? Other than the fact that it probably has a gazillion calories in it. (I thought when I went on this regimen months ago that one of the side benefits would be some weight loss. Ha! As usual, I have to watch the waistline.) But seriously, I must have missed something - is yogourt a no no? (Oh please say it isn't so - I just waved bye bye to cashews yesterday) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 > But seriously, I must have missed something - is yogourt a no no? (Oh > please say it isn't so - I just waved bye bye to cashews yesterday) My holistic doctor said the benefits of plain unsweetend yogurt (because it fights yeast) far outway the drawbacks it may have because it's a diary product. I wouldn't do it every day but I eat it maybe once a month with some stevia/vanilla in it. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2004 Report Share Posted January 24, 2004 hi everyone could some one please tell me about the ESR and CPR levels like what is normal and what is considered to be high and also how high is really bad?? also an update to hubby is he is now on 2 x 10mg of MTX a week now and in 4 weeks he will reduce the prednisone from 10mg a day to 7.5mg a day. his rhuemy also said that taking OMEGA OILS (in tablet form) may also help with the inflamation as they are also a slight anti- inflamitory. we wonder if anyone here has tried this and if so what the results were?? also we have been told by family member who has OA (possibily PA as well) that she has found that glucosomine tablets are also good has anyone tried these too?? feed back would be much appreciated thanx ruby and gary _________________________________________________________________ Hot chart ringtones and polyphonics. Go to http://ninemsn.com.au/mobilemania/default.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2004 Report Share Posted January 31, 2004 Everything you mention is lyme related. Please find a LLMD they are the only ones who really know how to treat it. I had it for yrs before treatment. IT will take many yrs, months,etc for her to feel better. you must go to a LLMD. Where do you live? [ ] Questions My daughter is 5 years old she is 40 inches tall and 35lbs. She is so tiny! so much smaller than her brothers at this age. So, this is breaking my heart. My daughter got sick over the holidays I thought the flu...we all were so sick .she caught it on 12/25 and again, yes she got sick with the flu twice. Never really recovering, staying tired fever off and on. by 1/5 complaining her legs hurt. i saw nothing wrong with her i told her to stop being a baby and go to school.. by 1/6 she could not walk went for xrays they were neg. and it was late ,i do have 3 other children they needed to eat and go to bed so home we went she had a horrible night no sleep...me no sleep by 8 am she was screaming and crying in pain...carried her back to the dr both of us in tears now my daughter who crawled at 4 months and walked at 8 months and is little but can take on her 10 year old brother is curled up in a fetal position not able to talk. So dr sees her sends us to childrens hospital..we are told she has some form of arthritis and they do lots of tests she has a terrible UTI send us home with wait for the test results and take antibiotics {. so now 2 weeks out today is 1/21 she still has the UTI its caused by a strep and e-coli bacteris and they tell me that her lymes tests came back positive, the PCR, E-LISA, and WESTERN BLOT all came back positive. so went to library today no book there..feeling a little over whelmed and lost So is lymes treatable with antibiotics and when will I get my daughter back? she is alittle beter but not back to normal we are seeing a Rhuemtiodoligist..ok cant spell that one on the 3rd of Feb anyone else I should ask to see? Also she never had a tick to my that <-- wait now that I think of it almost 2 years ago she had a tiny tick<-- I know of I am her only care taker..hubby not around and do not use babysitter..yes I have no life..lol never a rash or anything until this so this means that it has gone undetected for how long? over the summer she became constipated and we have had problems ever since..is this from that too? My question is what credentials should and what makes a LLMD? What makes a LLMD different from my pediatrician? What about health insurance? this DR is out of network and I'm just going to pay for it myself but if things continue or get worse I will not be able to afford that. What important questions should I ask? both the Drs. and Ins? What are some of the things you all wish someone would have told you or thought about asking in the beginning? I went to the county library and the only book they have was out Lyme the cause, cure and controversy? I think that was the title? it was out and not due back until the 2/14 . Any of you read a book? Have the title handy? Would love to read up on lyme disease. I'm not really ready to accept that my daughter has this. I read only on-line that there is no test that says YES you have lyme...its a process of elimination and if they say your western blot came back positive... something else could have made that happen I'm at a disadvantage knowing nothing of this disease and not having her records in front of me ...by the way calling for all her records on Monday. so far not being able to get any really hard copy proof of anything other than my pediatrician telling me to have her take amx for 2 more weeks and see the Rhuemitolighst. spelled that wrong and spell check doesn't know it and to lazy to look it up right now forgive me. Just confused. Also let me add today 1/30 maggie has been saying her hands were stinging and putting cold water on them. now tonight they are red and slightly swollen. they look fire red and tight..like the skin is tight... do any of you ever have this is this related to lyme? Help ??? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2004 Report Share Posted January 31, 2004 Sorry the last post was so fuzzy it was a bunch of emails/dairy of maggies condition and some of my questions. for the last 2 weeks. Went to the pediatrician today about her hands he told me to tell it to the rhuemitoligst. Ugh..just some answers. Asked about seeing an ID Dr. he said ask the rhuemitoligst. So I live in NJ driving is no problem. I'll go anywhere to make sure my daughter is OK. cost is an issue but, not my main concern right now. Was going to see a LLMD in Hammolton, NJ but canceled it because I heard he doesn't treat young children. also how do i convince my Drs. to refer me to a llmd? and how do I get info about a llmd who treats young children? and how do I get the ins to pay for it? and how do I know I'm not an overreacting mother driving the Drs. nuts? and school what about school? right now her teacher is wonderful!! but next year she will be in real school Kindergarden. She is in D-K now provided by the district. ANY SUGGESTIONS ARE WONDERFUL. I THANK YOU FOR BEING MY SOUNDING BOARD. JUST FOUND A SUPPORT GROUP THAT MEETS NEAR WHERE I LIVE BUT THEY ONLY MEET ONCE A MONTH I WILL GO IN FEB! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 , Since you don't have access to the book from the library, I have enclosed here a copy of a couple of an article that I had filed. Maybe it will give you some information to get you started. Because we don't attach any files in this group, I have copied and pasted the article here, so caution, this is a very long message! Carol 50 Lyme Q & A - by Ginger Savely, N.P., ILADS 1. Is Lyme disease caused by a virus, bacteria, or a parasite? Lyme disease is caused by a spirochetal bacteria. 2. Who is the doctor that identified the spirochete that causes Lyme disease? Dr. Willie Burgdorfer identified the spirochete responsible for Lyme disease (Borrelia burgdorferi) in the early 1980s. 3. How long after a person is in contact with an infected source will Lyme disease symptoms appear? Lyme disease symptoms may appear days, to weeks, to months, to years after the initial infection. 4. How many species of ticks carry the Lyme disease spirochetes? List three species of ticks found. Approximately how many species of fleas, mites, mosquitoes, or flies how been found to carry the Lyme disease spirochete? At least nine species of ticks, six species of mosquitoes, 13 species of mites, 15 species of flies, two species of fleas, and numerous wild and domestic mammals including rabbits, rodents, and birds have been found to carry the spirochete that causes Lyme disease. 5. Does a 'bulls-eye' rash go away without treatment? A Lyme rash (EM -or- ECM) will often disappear on its own without treatment, but it may linger for quite some time. It may reappear later as a single rash, or emerge later as multiple rashes, or it may appear in a different location on the body. 6. Does a Lyme rash occur at the site of the bite or elsewhere? The ECM rash may appear at the site of the tick bite or elsewhere on the body. Not everyone will get a rash and some will have multiple rashes. 7. If prescribing doxycycline for a tick bite, what precautions should be advised while taking the medication? Patients should be advised that taking doxycycline may cause sun sensitivity. . Doxycycline is not recommended for children under 8 since it may cause discoloration of their teeth. Doxycycline may also promote yeast and fungal overgrowths which should be addressed. Nausea, vomiting, and diarrhea are some of the possible side effects of Doxycycline. Birth control pills may not be as effective while taking Doxycycline and additional precautions to prevent pregnancy may be necessary. Doxycycline should not be taken with antacids or supplements that contain calcium, iron, magnesium, or sodium bicarbonate. Doxycycline use may cause liver problems or bruising. People taking Doxycycline should be advised that severe allergic reactions may occur and if there are any problems while taking Doxycycline, they should be reported to the doctor. 8. List five tick borne diseases that can be passed to humans by a tick. Lyme Borelliosis, Babesia Microti, Bartonella Henslea, Bartonella Quintana, Rocky Mountain Spotted Fever, Brucellosis, Ehrlichia HGE, Ehrlichia HME, Southern Tick-Associated Rash Illness (STARI), Tularemia (rabbit fever)- and possibly Leptospirosis are some of the tick borne illnesses that may be passed to animals or humans. 9. If a patient has previously had Lyme disease and is bitten by another infected tick, are they immune to Lyme disease? No, they are not immune. In fact, multiple bites may expose people to a number of other tick borne diseases in addition to new strains of Lyme disease. 10. Is a lumbar puncture required to confirm Neuro Lyme? Why? No. Lyme disease, as stated by the CDC, is a 'clinical diagnosis'. Research indicates that less than 20 percent of those with Lyme disease have shown a positive reading in the spinal fluid. 11. List five of the most common diseases that are often mistaken for Lyme disease. There are many different diseases or conditions that are found in patients with Lyme disease. All too often Borellia organisms are not being considered as the cause for patient's complaints, signs, and symptoms. For example, an Ophthalmologist may diagnose any of the following conditions: conjunctivitis, ocular myalgias, keratitis, episcleritis, optic neuritis, pars planitis, uveitis, iritis, transient or permanent blindness, iritis, photophobia, temporal arteritis, vitritis, Horner's syndrome, ocular myasthenia gravis, or Argyll-on pupil. All of the conditions listed have been documented in Lyme disease patients and many of these diseases or conditions improve with proper antibiotic therapy. Urologists, for example, may not realize that recurring bladder infections or swollen testicles are being caused by spirochetal organisms. Infectious disease specialists often dismiss patients concerned about Lyme disease because many are under the assumption that Lyme disease is very 'rare', and/or they are not familiar with the various signs and symptoms of Lyme disease. Lyme disease is often misdiagnosed as: Chronic Fatigue Syndrome, Multiple Sclerosis, Alzheimer's, Parkinson's disease, Lupus, Lou Gehrigs (ALS) disease, Guillian-Barre Syndrome, Polymyositis, Hepatitis, Cardiac Disorders, Fibromyalgia, TMJ, Ringworm, Tullio Phenomenon, Encephalitis, ADD, ADHD, Meningitis, Depression, Panic Disorders, Bells Palsy, Candidiasis, Chronic Mononucleosis, Hypoglycemia, Scleroderma, Epstein Barr Virus, Heart Disorders, Autoimmune diseases, Bannwarths Syndrome, Cancers, Kidney disease, Raynauds Syndrome, Stress-related Illness, Sleep Disorders, Thyroid problems, Vasculitis, Anorexia, Agoraphobia, Cerebrovascular Disorders, Arthritis, Connective Tissue diseases, Hearing Disorders, Crohns disease, Purpura, Pseudotumor, Sjogrens Syndrome, Stroke, and Respiratory Insufficiency. 12. If a person has an EM rash and a negative ELISA test, should they be treated? How? Yes. An ECM rash is diagnostic for Lyme disease. Current guidelines approved by ILADS (International Lyme and Associated diseases Society) recommend oral therapy for at least 6 weeks for both adults and children when a rash is present. Lyme patients who are pregnant have special guidelines to help protect themselves and their unborn child. According to the CDC, Lyme disease is a 'clinical diagnosis' and negative tests are not to be used to rule out the disease. 13. List the studies you have read by any of the worlds leading Lyme disease experts. Where can a patient go to be enrolled in a current Lyme study? There are over 15,000 published medical studies, abstracts, videos, and general brochures concerning Lyme and other tick borne illnesses. Physicians may request assistance and information from ILADS, the International Lyme and Associated diseases Society. There are a number of ongoing Lyme disease studies, such as the four year study being conducted Dr. B. Fallon, which is being funded by the NIH. The results of the chronic Lyme disease study by Dr. Donta were recently released. 14. How many different strains of the spirochetes that cause Lyme disease have been identified to date in the United States and world wide? Eight different species and over three hundred strains of spirochetes that cause Lyme disease symptoms have been identified world wide. To date, more than 100 different strains have been identified in the United States. 15. What is STARI? STARI is a strain of spirochete that was 'discovered' in the southeastern sections of the United States within the past few years. It causes Lyme-like symptoms but is not normally detected by the current standard Lyme tests. ST ARI (Southern Tick-Associated Rash Illness) 16. What is WA-1? WA-1 is a newly identified strain of Babesiosis which has been found in a number of people who are also infected with Lyme disease. There have been new tests developed to identify this specific strain in humans but the tests are not performed at all labs. To test for this strain of Babesiosis, physicians should have blood sent to specialty labs, such as Igenex Lab in CA. 17. Approximately how many Lyme disease patients are co-infected with Babesiosis (in land, USA?) What is the most effective treatment for Babesiosis? Estimates from labs, support group leaders, and doctors offices indicate that approximately 25-50 percent of patients with Lyme disease in land are also are co-infected with Babesiosis. Unfortunately, many patients are never tested so the numbers may be even higher. A combination of Atovaquone(Mepron-750 mg. 2x daily) and Azithromyacin (Zithromax- 250 mg day) is considered to be the best treatment for Babesiosis. Some patients who were untreated for long periods may need extended treatment or may need to be retreated if symptoms return. This treatment protocol is less toxic than the quinine sulfate and clindamycin combination that was once used and there are fewer side effects reported. 18. What percentage of people with Lyme disease remember having a rash or remember being bitten by a tick? Various studies show that anywhere from 20-80 percent of seropositive Lyme disease patients with active symptoms do not recall a rash. Less than 50 percent of Lyme disease patients remember being bitten by a tick. 19. After a person is bitten by a tick, how soon is it before the spirochete can be found in the spinal fluid? Reports indicate spirochetes can disseminate quickly throughout the system (in as little as 6 hours in some cases). In addition, spirochetes are able to change forms and remain undetected in the spinal fluid. The old 'wait and see' if symptoms appear before treating theory allows the organism to go unchecked, causing multiple problems and decreasing the patient's chance for a full recovery. 20. What signs and symptoms would lead a doctor to suspect a Babesia infection in a patient? How many strains of Babesiosis have been identified and how many are commonly tested for in commercial labs? The following signs/symptoms may be present in those infected with Babesiosis: Fatigue * Arthralgias* Myalgia* Drenching sweats* Headaches* Emotional lability* Depression* Dark urine* Splenomegaly* Dizziness* Nausea and vomiting* Cough* Dyspnea* Fever* Chills* Hepatosplenomegaly* Jaundice* Malaise* Shortness of breath* Bleeding tendencies, bruising* Thrombocytopenia* Hemoglobinuria* Hyperesthesia* Pulmonary edema*Encephalopathy* Low to normal range leukocyte counts* Possible elevated levels of dehydrogenase, bilirubin, trans-aminase* Anorexia* Approximately 25%- 66% of Babesia patients are known to be co-infected with Lyme disease. These symptoms may continue for long periods of time, decrease, then return. A low Babesiosis titer (IgG) often indicates a chronic infection. An acute or current in-fection may show a higher reading on an initial IgM test. There are over 100 species of Babesia in the United States but only ONE or TWO species are currently checked by commercial labs. 21. Describe the rash seen in patients with Lyme disease and two of the most common variations of that rash. There is no 'typical rash' that all patients get when infected with Lyme disease. Many people do not remember a rash or even a tick bite. If a rash does appear, it may be anywhere from a light pink color to blazing red, to blue, to purple depending on the skin color, the type of rash, and possible co-infections. The ECM rash can be as small as a quarter, be present in several locations, or be large enough to cover the entire back of an adult. The rash may be mistaken for an insect bite reaction or even ringworm. It may be hot, it may flake or swell. It may be well formed and expanding or have uneven or raised edges. It may disappear and return later and it may be slightly itchy in some individuals. Borrelial lymphocytoma may appear on the earlobe, the scrotum, or on the nipple of the breast. It may be bright red to a bluish color and may disappear and return later. The ACA rash (acrodermatitis chronica atrophicans) may have the appearance of a scleroderma rash and is often noticed on the feet and ankles and/or the hands. It may appear elsewhere on the body and may affect organs. 22. Describe the rash seen in patients with Babesiosis. Many patients infected with the Babesia organism do not present with a rash, however, they may appear jaundiced and some may have a petechial rash. 23. Describe the rash seen in patients with Bartonella. The rash/lesion that is typically associated with Bartonella may not be present in patients or may not be noticed. If there is a rash/lesion, it may appear to be a small reddish brown lesion (often mistaken for an insect bite). It may heal without intervention. The patient exposed to Bartonella may have urticaria, vesiculopapular lesions, or erythema nodosums. Many Bartonella patients have swollen and/or tender lymph nodes which may become infected. 24. How do you test for and treat (which drugs) the 'cyst' form or 'L' form of the Lyme disease? Specific tests have been developed to identify some of the various forms of spirochetes using dark field microscopes. Flagyl, which has been shown to burst the cell walls of the cyst form, is currently being prescribed to patients. Normally it is prescribed along with other antibiotics, since Flagyl alone is not effective on the intact spirochetes. 25. What has the CDC determined to be the proper testing procedure for confirming that a patient does or does not have Lyme disease? TRICK question- The CDC states emphatically that Lyme tests are NOT to be used to exclude a diagnosis of Lyme disease. A negative test is NOT to be considered absolute by any means... nor is it to be used to indicate a cure. As the CDC states, Lyme disease is a 'clinical diagnosis'. No test has been developed that can confirm a patient is 'cured' of Lyme disease. 26. What is the two tier testing procedure set up by the CDC for testing patients suspected of having Lyme disease and what are the most common problems with this procedure? Doctors have been instructed (CDC guidelines) to obtain an ELISA (titer) first, which, under the best circumstances, only identifies 40-50 percent of those who actually have Lyme disease. An ELISA should NOT be used as a screening test due to the unreliable results. The guidelines state, if the ELISA is positive, physicians are to perform a Western Blot test which, under the best circumstances, only identifies 70-80 percent of those who have been exposed. Most labs do not report specific bands on the Western Blot tests, hindering the experienced physician and the diagnosis even further. This procedure allows many cases of Lyme disease to be missed, therefore, patients are not being identified or properly treated. The CDC guidelines also state which specific bands on a Western Blot are to be used to consider a test positive. When the list was developed, certain bands specific for Lyme disease, were not included. When these bands are positive, it confirms exposure, but it is mistakenly reported to the doctor and patient as a 'negative test'. Many 'borderline tests' are reported to patients, by the physician, as being negative and many positive tests are reported to be 'false-positive' because physicians are not familiar with reading test results, nor with the multiple symptoms that can occur in a person with Lyme disease, and the connection between the two is missed. Many patients who have chronic Lyme disease will have low titers or seronegative results. 27. Which bands normally show up first on a Western Blot test? Which bands are specific for Lyme disease? Which bands normally appear after the patient has had Lyme for at least one year? The first Western Blot band to show positive is normally the 41KD band followed intermittently by the 23KD band. Bands 18KD, 23-25KD, 31KD, 34KD, 37KD, 39KD, 83KD and 93KD are specific for indicating Bb exposure. The problem is they may not show up early in the infectious stages or may not appear for a year or more, or they may not show up at all. The ILADS 2002 Guidelines state that the presence of the 41KD band along with one of the specific bands listed above indicates a person has been exposed to Lyme disease. 28. List reasons why a Lyme test may not be accurate. 1. Antibiotic use prior to testing 2. Patient has been on steroids or cancer drugs 3. Antibodies are bound by bacteria 4. Immuno supression 5. The bacteria has shifted forms 6. Lab standards for cut off are too high 7. The test was performed too early or before antibodies had a chance to form 8. Bands checked are for reporting purposes, not for clinical diagnosis 9. Poor lab used that does not specialize in tick borne illnesses 10. Contamination of specimen 11. Various strains are not identified using standard tests 29. Can bismuth be used for Lyme patients? Studies have shown that bismuth will penetrate Borellia cyst walls. Intestinal problems are especially common in children with Lyme disease and bismuth compounds may eventually prove to be effective in treating the cyst form of the bacteria in the intestines. 30. What are the symptoms of Bartonella, what is the standard treatment for Bartonella, and how long should a person be treated? Common symptoms of Bartonella include fatigue, swollen lymph nodes, encephalopathy, headaches, cognitive dysfunction, rash/lesions, vision problems, numbness, and tingling. Reports indicate Doxycycline may be effective in treating Bartonella. Rifampin has also been used in combination with Doxy, but is not as successful alone. Several other antibiotics have been reported to be successful in Bartonella treatment. Antibiotics have occasionally been used for over a year to attempt to eradicate the persistent bacteria. 31. If a patient is infected with Lyme, Babesiosis, and/or Ehrlichiosis, which infection should be treated first? In co-infected patients, treating Babesia first has been proven to be more effective, however, in acute situations, treatment for all infections should be considered. 32. Where would you send blood and tissue samples to have the best available tests done on Lyme patients? Igenex Lab in California performs a variety of tests for tick borne diseases (PCR, urine tests- DOT, RWB- Reverse Western Blots, Lyme, Babesia, Erhiclia, and Bartonella). Igenex reports all WB bands, providing more factual results in the clinical setting. Bowen Lab in Florida is licensed to perform tests in which spirochetes in various forms can be detected and photographed from Babesia and Ehrlichiosis. MDL Lab in NJ is also used by many physicians treating Lyme patients. 33. What is a 'Lyme Dot'? Lyme Dot is a urine test performed by Igenex Lab which detects spirochete residue in urine samples. 34. What is an ACA? ACA (acrodermatitis chronica atrophicans) is a skin rash normally seen in patients with late stage Lyme disease which is usually attributed toBorrelia afzelii. It is sometimes mistaken for scleroderma. The ACA rash indicates ongoing chronic infection. 35. What is a Herxheimer reaction? Jarisch-Herxheimer's reactions often occur during antibiotic therapy for spirochetal infections and may be fatal in some cases. A 'herx' occurs when the spirochetes die off and produce toxins. Symptoms may become much worse during the reaction. Due to the replication cycle of the spirochete, treatment for Lyme should continue for several months after all Jarisch-Herxheimer reactions have ceased and all symptoms have cleared or the patient is likely to relapse. 36. How does prednisone help the Lyme patient? Trick question- NEVER take steroids if Lyme disease is even suspected! Steroids suppress the immune system which allows the spirochetes a non challenged place to multiply. Many people who now suffer with chronic cases of Lyme disease were given steroids and are now chronically ill, disabled, or have died. 37. Approximately how many Lyme and Babesia cases are reported (in land, USA)? At this time, Babesia cases are not reportable in land. land ranks sixth in the nation for the most cases of Lyme disease. There were over 4,000 cases reported in land in the 1990's. It is estimated that this figure should be at least ten times higher, therefore, about 40,000 cases are suspected. Consequently, over 30,000 cases were missed. Since some Lyme patients are treated 'clinically', blood tests are not always ordered. This reduces the actual number of reported Lyme disease cases. 38. Since Lyme is a multi-systemic disease, list 20 of the over 150 documented signs, symptoms, or indications that someone may have Lyme disease? Lyme disease can have a wide range of symptoms, which can go dormant (sometimes for years), can migrate, return, disappear, or change day by day. Symptoms can be aggravated by stress, medications, weather, and other outside influences. Symptoms may tend to worsen on a four week peaking cycle. SOME of the symptoms that may be found in those with Lyme disease include: Flu-like symptoms, headaches (mild to severe), recurring low grade fevers or fevers up to 104.5 degrees. Usually in the first few weeks of Lyme disease fevers tend to be higher. (Patients with Lyme disease often tend to have a " normal temperature " below 98.6 degrees, therefore, a slight rise in temperature may be all that is noted.) Often patients exhibit fatigue (mild to extreme), joint pain (with or without swelling), muscle pain, connective tissue pain, recurring sore throat (sometimes only on one side of the throat), swollen glands (come and go), varying shades of red on ear lobes and pinna, malar rash, cold hands and feet in a warm environment, weakness, lightheadedness, eczema and psoriasis, painful or itching skin, flushing, night or day sweats, inordinate amounts of sweating, anhydrosis (inability to sweat), or dermatitis (acrodermatitis chronica). There may be a rash, but it isn't noticed or does not appear in all cases. The rash may be basically circular with outward spreading, however, other varieties are seen. The rash may be singular or multiple, at the site of a bug bite, or in another location, warm to touch, or slightly raised with distinct borders. In dark skinned individuals the rash may appear to be a bruise. Numbness, sleep disturbances, vertigo, hearing loss, feelings of being off-balance, unexplained weight gain or loss, and feeling " infected " are also problems associated with Lyme disease. Symptoms may develop that include: panic attacks, anxiety, depression, mild to severe cognitive difficulties, mood swings, coma, seizures, dementia, mania, biploar disorders, vivid nightmares, stammering speech, confusion, memory loss (short or long term), " brain fog " , vibrating feeling in head, topographical disorientation, and environmental agnosia. Some patients have problems with numbers and sequencing, disorganization of thoughts, rambling on in great detail while talking, frequent errors in word selection or pronunciation, changes in personality, short attention span, Tourette manifestations, OCD (obsessive compulsive disorder), raging emotions, and cranial nerve palsies. Patients have reported bladder disfunction (neurogenic bladder with either hesitancy, frequency, loss of bladder awareness, urinary retention, incontinence or symptoms of UTI, and chronic pyelonephritis). Intersitial cystitis, irregular or severe menstrual cycles with decreased or increased bleeding, early menopause, a new onset of P.M.S. symptoms, or disturbed estrogen and progesterone levels are documented in many cases. Other problems include altered pregnancy outcomes, severe symptoms during pregnancy, abdominal bloating, irritable bowel syndrome, abdominal pain and cramping (may appear to be ulcers), loss of sex drive, testicular or pelvic pain, breast pain, and fibrocystic breast disease. Diarrhea (which can come and go or last for months with no explanation), constipation (which can be severe enough to cause blockage), irritable bowel syndrome, spastic colon, nausea, stomach acid reflux, gastritis, abdominal myositis, and indigestion are some of the gasto-intestinal disorders reported. In addition, patients demonstrate a higher occurrence of various types of cysts (liver, breast, bone, ovary, skin, pineal gland and kidney). Some Lyme patients are diagnosed by their eye care professionals and have been documented as suffering from one or more of the following disorders: conjunctivitis, ocular myalgias, keratitis, episcleritis, optic neuritis, pars planitis, uveitis, iritis, transient or permanent blindness, iritis, photophobia, temporal arteritis, vitritis, Horner's syndrome, ocular myasthenia gravis, and Argyll-on pupil. Often eye problems require a changing of prescription glasses more often than normal. Heart-related problems are associated with Lyme disease and can include: mitral valve prolapse, irregular heart beat, ocarditis, pericarditis, enlarged heart, inflammation of muscle or membrane, shortness of breath, strokes, and chest pain. Twitching of facial muscles, Bell's palsy, tingling of the nose, cheek or face are reported. In addition, there may be chest pain or soreness, enlarged spleen, liver function disorders, tremors, extreme sensitivity to being touched or bumped, burning sensations, stiff neck, meningitis, and encephalitis. Patients may experience continual or recurring infections (sinus, kidney and urinary tract are most common). Patients may suffer from a weakened immune system, the development of new allergies, recurring upper respiratory tract infections (causing, or worsening of pre-existing sinusitis, asthma, bronchitis, otitis, mastoiditis), and allergic or chemical hypersensitivity's. Other noted problems include: T.M.J., difficulty swallowing or chewing, tooth grinding,arthritis (in small joints of fingers and larger, weight bearing joints), Osgood-Schlatter's Syndrome (water on the knee), bone pain, gout-like pain in toe, muscle spasms to the point of dislocating joints and tearing muscletissue, leg and hip pain, " drawing up " of arms, " growing pains " in children, tendonitis, heel pain, carpal tunnel syndrome, and paravertebral lumbosacral muscle strain/spasm. Some patients tend to suffer from a monthly " flare-up " of symptoms as the spirochetes reproduce and/or die off. 39. When testing by EEG and MRI, what are the results that may indicate Lyme disease could be a problem? Some EEG's have been abnormal showing bilateral sharp waves and some slowing. CAT Scans have usually been normal. A number of MRI's have been abnormal showing evidence of increased signal in the white matter which may resemble what is seen in patients with MS. 40. What are the symptoms and signs in a patient with Ehrlichiosis? Symptoms of Ehrlichiosis may include: fever, chills, muscle pain, headaches, confusion, nausea, vomiting, and a few patients have a rash. 41. Is Babesia a bacteria, protozoan, virus, or parasite? Babesiosis is caused by a protozal parasite which is treated with antiviral medication and an antibiotic. Antibiotics alone are not effective for treating Babesiosis. 42. Is HGE or HME more common (in land, USA)? Both HGE and HME have been responsible for infecting animals and humans in land. Serology tests for both should be performed if Ehrlichosis is suspected. 43. Approximately how many late cases of sero-negative Lyme patients will become sero-positive after successful treatment? It has been reported that increasing numbers of seronegative patients who were diagnosed clinically and treated for Lyme disease, converted to seropositive after the completion of antibiotic therapy. Unfortunately, physicians unfamiliar with Lyme disease are refusing treatment to seronegative patients even when they have active symptoms. The CDC states Lyme disease is a clinical diagnosis and negative tests should not be used to rule out diagnosis. 44. Why do some patients respond to certain antibiotics and others not respond? Certain gene types, spirochetal loads, various strains, co-infections, previous health issues, delays in treatment, immune system activity, and many other factors contribute to the success or failure of antibiotic therapy. One size does not fit all. Each patient's history and clinical picture should be considered by experienced physicians prior to treatment. 45. How high of a dose of doxycycline or tetracycline is needed for adults to allow the medications to be bactericidal instead of bacteriostatic? The 'typical' doses (100 mg 2 X day) of Doxycycline that were prescribed by many doctors were not high enough to be considered bacteriostatic for Lyme disease. To enhance antibiotic action several other agents are now being prescribed along with the antibiotics in order to increase effectiveness. In addition, the recommendations for doxycycline doses now range from 300-600 mg a day. If necessary, doxycycline can be administered by IV to keep blood levels high. 46. What are the two most common medications prescribed to remove Lyme disease neurotoxins from the body? Welchol and Questran are the most commonly prescribed medications ordered to remove toxins. 47. Should a patient with Lyme disease be restricted from donating blood? Anyone who has Lyme disease or any of the co-infections often found in Lyme patients should not donate blood or organs. 48. What special precautions should be taken with pregnant women who contract Lyme disease? There are special guidelines for treating pregnant women infected with Lyme and other tick borne illnesses. Physicians are advised to contact the International Lyme and Associated diseases Society (ILADS) for specific treatment guidelines and precautions. All pregnant patients should be tested for co-infections and should be aware that breast milk may also pass the infection to children. Newborns should have cord samples and tissue sent for PCR testing to check for Lyme disease. 49. What are the symptoms of Brucellosis? Fever, chills, headaches, excessive sweating, fatigue, back pain, and joint pain are some of the symptoms that may be present in a person infected with Brucellosis. 50. How do you properly remove a tick? Where can the tick be sent for testing and what are the costs? How do you package the tick for shipment? Does the tick need to be alive for testing? To remove an attached tick- Do not touch the tick with your fingers or squeeze the tick. Use fine point tweezers to grasp the tick as close to the skin as possible. Pull the tick out in the opposite direction from the way it entered, with a smooth motion. Do not twist or crush the tick. Clean the wound with alcohol to help prevent a secondary infection. Place the tick, dead or alive, in a plastic baggy with a cotton ball that is slightly damp. Contact your local health department or a lab that performs tick testing, such as Igenex Lab, to determine the current shipping methods and prices for tick testing. The current (04/03) cost to test an individual tick (or up to 20 ticks together) is approximately $50.00 for each tick borne disease. This information is also published on Lymenet- http://flash.lymenet.org/ubb/Forum1/HTML/013670.html Visit Lymnet forum. Carol Fitzgerald VisionWork 919 Osos Way Paso Robles, CA 93446 805.237.1807 805.550.3907 [ ] Questions My daughter is 5 years old she is 40 inches tall and 35lbs. She is so tiny! so much smaller than her brothers at this age. So, this is breaking my heart. My daughter got sick over the holidays I thought the flu...we all were so sick .she caught it on 12/25 and again, yes she got sick with the flu twice. Never really recovering, staying tired fever off and on. by 1/5 complaining her legs hurt. i saw nothing wrong with her i told her to stop being a baby and go to school.. by 1/6 she could not walk went for xrays they were neg. and it was late ,i do have 3 other children they needed to eat and go to bed so home we went she had a horrible night no sleep...me no sleep by 8 am she was screaming and crying in pain...carried her back to the dr both of us in tears now my daughter who crawled at 4 months and walked at 8 months and is little but can take on her 10 year old brother is curled up in a fetal position not able to talk. So dr sees her sends us to childrens hospital..we are told she has some form of arthritis and they do lots of tests she has a terrible UTI send us home with wait for the test results and take antibiotics {. so now 2 weeks out today is 1/21 she still has the UTI its caused by a strep and e-coli bacteris and they tell me that her lymes tests came back positive, the PCR, E-LISA, and WESTERN BLOT all came back positive. so went to library today no book there..feeling a little over whelmed and lost So is lymes treatable with antibiotics and when will I get my daughter back? she is alittle beter but not back to normal we are seeing a Rhuemtiodoligist..ok cant spell that one on the 3rd of Feb anyone else I should ask to see? Also she never had a tick to my that <-- wait now that I think of it almost 2 years ago she had a tiny tick<-- I know of I am her only care taker..hubby not around and do not use babysitter..yes I have no life..lol never a rash or anything until this so this means that it has gone undetected for how long? over the summer she became constipated and we have had problems ever since..is this from that too? My question is what credentials should and what makes a LLMD? What makes a LLMD different from my pediatrician? What about health insurance? this DR is out of network and I'm just going to pay for it myself but if things continue or get worse I will not be able to afford that. What important questions should I ask? both the Drs. and Ins? What are some of the things you all wish someone would have told you or thought about asking in the beginning? I went to the county library and the only book they have was out Lyme the cause, cure and controversy? I think that was the title? it was out and not due back until the 2/14 . Any of you read a book? Have the title handy? Would love to read up on lyme disease. I'm not really ready to accept that my daughter has this. I read only on-line that there is no test that says YES you have lyme...its a process of elimination and if they say your western blot came back positive... something else could have made that happen I'm at a disadvantage knowing nothing of this disease and not having her records in front of me ...by the way calling for all her records on Monday. so far not being able to get any really hard copy proof of anything other than my pediatrician telling me to have her take amx for 2 more weeks and see the Rhuemitolighst. spelled that wrong and spell check doesn't know it and to lazy to look it up right now forgive me. Just confused. Also let me add today 1/30 maggie has been saying her hands were stinging and putting cold water on them. now tonight they are red and slightly swollen. they look fire red and tight..like the skin is tight... do any of you ever have this is this related to lyme? Help ??? To contact the list owner for any reason please write to: -Owner Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2004 Report Share Posted February 29, 2004 Dear Carey, my name is Janice and I have a son who is now 8years. He has Stills Disease (systemic JRA). His paediatrician called it a working diagnosis for quite sometime before diagonising him with the above diagnosis. I was told that there was no actual blood test that they could do to show what it is. Not sure why.Something to do with the type of arthritis it is as to whether they show rheumatoid factor, I think it's been awhile since i read all the info on it.Unfortunately this disease seems to run this extraordinary course that takes the child and the parents to places that we never even knew existed. Hope this has been of some help, this is a great group for support. People here know what your talking about. Kind Regards Janice from downunder (N.Z) Questions HelloMy daughter is 2 years old has not yet been diagnosed with jra. Her pediatricians think she has it and her specialist want to wait and see. For a year she has had high spiking fevers of unknown origin. She was first diagnosed with . Then in September of last year her joints started swelling and she fevered the entire month. They at first would go from one joint to the other. In November she had her tonsils out and her fevers have gotten better. The joints have not. She also gets an unusual rash that appears either on her chest or her arms usually lasting anywheres from an hour to a few days. Her joint swelling now is mainly in her wrists and hands. The specialist said they don't see any joint deteriation although no x-rays have been done. Her blood work also comes back negative. So now the are saying it is an autoimmune disorder of unknown origin. They don't want to give her a jra diagnosis right now since it has not been long enough. I guess my question is how long does it usually take since the doctors are not very forth coming with information? What kind of tests are usually done to figure this out? Should x-rays be done? I know that early morning, bed time, cold weather and a lot of physical play seems to be when we notice an increase in swelling and pain. I am very frustrated and concerned. I want so much to help her but feel like I keep hitting a brick wall. If anyone could give me any advice I would greatly appreciate it.Carey mom to Hannah ville, TN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2004 Report Share Posted March 1, 2004 Hello Carey, As far as I know, there isn't any test that can be ran to determine what type of arthritis your daughter has. It is more a "ruling out" thing that the doctors have to do. It would probably be a good idea to document when the fever occurs (the time of day and how high her fever runs), when and where the rashes are and even when she is feeling okay. This could/should give the doctor some indication as to what might be going on. With my daughter, her fever seemed to spike to 107 in the afternoons and would drop to around 101 in several hours. This went on for many weeks and I noticed that she also had a rash on her chest and thighs. In the early mornings she would be fine only for things to happen all over again and without any warning. Sometimes the doctors will look at the "sed-rate" to see if it is elevated but still that does not give a diagnosis. Also, there is a ANA test that can be given. Do you know of any of the test that have been ran? I wish you the best and hope that your daughter starts feeling better really soon! Sincerely, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2004 Report Share Posted March 1, 2004 In a message dated 2/29/04 6:44:21 PM Central Standard Time, app_37190@... writes: .. The specialist said they don't see any joint deteriation although no x- rays have been done. Her blood work also comes back negative. So now the are saying it is an autoimmune disorder of unknown origin. They don't want to give her a jra diagnosis right now since it has not been long enough. I guess my question is how long does it usually take since the doctors are not very forth coming with information? What kind of tests are usually done to figure this out? Should x-rays be done? I know that early morning, bed time, cold weather and a lot of physical play seems to be when we notice an increase in swelling and pain. I am very frustrated and concerned. I want so much to help her but feel like I keep hitting a brick wall. If anyone could give me any advice I would greatly appreciate it. Hi Carey, Persistant arthritis has to continue for 6 weeks to make a diagnosis.There are no specific blood tests for JRA.You basicaly have to rule other things out first.X rays will ownly show damage where as MRI's can detect inflimation. You didn't mention what kind of specialist.Are you going to the department of Pediatric Immunoligy,Rheumatoligy,allergies at Vanderbilt?The reason I ask is we live in Murfreesboro Tn and I have a 5 yr old that was diagnosed in June01.We see Dr Lawton and Dr.Hummel at Vandy and Dr.Mencio is the orthopedist sees.I am sorry you feel like you keep slamming into a brick wall.It's got to be so hard when the doctors dont know exactly what your child has so they don't know the best way to treat it.In the meantime the child suffers.This list is great but if you want to talk about Vanderbilt or and how we got him in you can e-mail me at Arthurnator@... Hugs Becki and 5 systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2004 Report Share Posted March 1, 2004 Hi Carey, Welcome to the group... I think most of us here can totally understand where you are right now.. weve all been there. I know I have! JRA, is not something that can be dx with any one simple test, unfortunatly, its more a case of ruling out other illness, keeping an eye on its course and in time you hopefully get an answer. Theres a few on here that dont have a definate rx yet, although all signs say JRA. My son has systemic JRA, but in the begining, I was told he had untreated strep, scarlet fever, Kawssakis disease and even a "virus". The 1st few months are the worse and i think are also the times Systemic kids are at their worse. Once they start treating things get better. Even now, Nicks rhumey made the comment at his last visit, "you are always wondering if you have the right DX" I think that the rhuemys are always keeping in the back of their minds that it might be something else and always keep an open mind and watch for any and all new symptoms. Systemic Kids will more than likely have negative ANA and negative RF.. they will have elevated SED rates and CRPs although this is not always the case and JRA are not the only factors to make these two tests evevated. The best advice i got was to keep a daily record, take pictures of any rashes and learn to be the best advocate you can be for your child, by reading all you can, asking lots of questions and getting to understand this disease. It is all overwelming at 1st, but as you learn more, it will make more sense. The folks on this list have soo much knowledge between them and will be able to help answer any of your questions and more than that, they are an amazing source of support and compassion. Hugs Helen, mom to (6,systemic) Hugs..Helen DH Dan DS's (20)(14)(12)Zachary(9)(6) DD (4)>From: app_37190@... >Reply- > >Subject: Questions >Date: Mon, 01 Mar 2004 00:42:10 -0000 > >Hello > >My daughter is 2 years old has not yet been diagnosed with jra. Her >pediatricians think she has it and her specialist want to wait and >see. For a year she has had high spiking fevers of unknown origin. >She was first diagnosed with . Then in September of last year >her joints started swelling and she fevered the entire month. They >at first would go from one joint to the other. In November she had >her tonsils out and her fevers have gotten better. The joints have >not. She also gets an unusual rash that appears either on her chest >or her arms usually lasting anywheres from an hour to a few days. >Her joint swelling now is mainly in her wrists and hands. The >specialist said they don't see any joint deteriation although no x- >rays have been done. Her blood work also comes back negative. So >now the are saying it is an autoimmune disorder of unknown origin. >They don't want to give her a jra diagnosis right now since it has >not been long enough. I guess my question is how long does it >usually take since the doctors are not very forth coming with >information? What kind of tests are usually done to figure this out? >Should x-rays be done? I know that early morning, bed time, cold >weather and a lot of physical play seems to be when we notice an >increase in swelling and pain. I am very frustrated and concerned. I >want so much to help her but feel like I keep hitting a brick wall. >If anyone could give me any advice I would greatly appreciate it. > >Carey mom to Hannah >ville, TN > Take off on a romantic weekend or a family adventure to these great U.S. locations. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2004 Report Share Posted March 1, 2004 Hi Carey: I am glad you found this group. You will find this group to have some of the most caring, compassionate and informative people! People who have and are still walking in your shoes! My daughter, Caitlin (11), is still not officially diagnosed. She became very ill in November with a sore throat, fever (105) rash and in such pain that she couldn't walk. During the two weeks of going back and forth many times to the peds office, they strep cultured her twice and they were both negative. However, at the hospital, her ASO test came back positive. She stay in the hospital for a week and while there, they suspected Rheumatic Fever. Now the rheumy is looking at Reactive Arthritis or Systemic JRA (Still's). Her cardiology check up today was perfect and I think RF is out, thankfully. She has had just about every test done under the sun. Her sed rate was very high (120). It is now down to normal at 11 YEAH. This just happened in the last two weeks. She also had a bone marrow biopsy done to check for leukemia. Scary stuff, but like people have said already, it's a process of ruling out as you go along. The waiting is frustrating. I know. We have kept a journal of her everyday events. Fevers, rash, meds, things that worked, things that didn't, if she vomited, when I called the doctors, what they said, what she ate, everything! It's great to help keep track of what seems to be going on and great for the doctors to review if needed. I look at it now and see how very far she has come. We took pictures also. Caitlin has had red spots, splotches and lines (almost like someone scratched her). At her latest blood draw her numbers are, for the most part, now good. Sed rate is down, hemoglobin is up, etc. We have learned to live day by day with this illness. We still want an official diagnosis, but only time will tell that. Caitlin is on quite a few medications for her illness. Have they put your daughter on anything to help with the pain and the swelling? I wish your little Hannah pain free days ahead and hope that you get some answers soon. Do you have other children? I know Caitlin's sisters each had a very different reaction to her serious illness. Her twin sister, , wanted Christmas again because " it wasn't much fun because Caitlin was so sick " (she had the bone marrow the day before too). She also wanted to go to church and pray for her all the time. Meanwhile, her sister, Alyssa (13), just told her to " stop her whining " . Typical teenager, I guess. Take care. Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2004 Report Share Posted March 1, 2004 In a message dated 3/1/04 5:23:05 PM Eastern Standard Time, maryfield@... writes: << Patty- I have hard several people refer to an ASO test. What is that? Therese Re: Questions >> Hi Therese: What is an antistreptolysin-O (ASO) test? The antistreptolysin-O (ASO) test is a blood test that measures the levels of ASO in the blood. ASO is an antibody produced by the body to fight streptolysin-O — an enzyme produced by a specific type of bacteria called Group A streptococci (“strepâ€). High levels of ASO may remain in the blood for months following the onset of infection, even after the bacteria causing the infection have been eliminated. Initially, I was told it was actual strep in the blood. Totally freaked me out. The doctor, just today, explained to me that it is not actual strep in the bloodstream, but an antibody created to fight off the strep. Makes sense to me now:) Take care. Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2004 Report Share Posted March 1, 2004 Very well said Helen. Strep certainly seems to be the 'kick off' to systemic JRA. I'd be curious to see just who with SoJRA was triggered or flared by strep. Anyone care to answer if theirs was? We might just find out something interesting, ehhh. Take care. Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2004 Report Share Posted March 1, 2004 Hi Helen- Thanks for the answer. So, a positive ASO would be something that would possibly help in diagnosing certain forms of JRA because they start many times with strep? Is that how it relates? Therese Re: Questions > > > Hi Carey: > > I am glad you found this group. You will find this group to have some of the > most caring, compassionate and informative people! People who have and are > still walking in your shoes! > > My daughter, Caitlin (11), is still not officially diagnosed. She became > very ill in November with a sore throat, fever (105) rash and in such pain that > she couldn't walk. During the two weeks of going back and forth many times to > the peds office, they strep cultured her twice and they were both negative. > However, at the hospital, her ASO test came back positive. She stay in the > hospital for a week and while there, they suspected Rheumatic Fever. Now the > rheumy is looking at Reactive Arthritis or Systemic JRA (Still's). Her cardiology > check up today was perfect and I think RF is out, thankfully. She has had > just about every test done under the sun. Her sed rate was very high (120). It > is now down to normal at 11 YEAH. This just happened in the last two weeks. > She also had a bone marrow biopsy done to check for leukemia. Scary stuff, > but like people have said already, it's a process of ruling out as you go along. > > The waiting is frustrating. I know. We have kept a journal of her everyday > events. Fevers, rash, meds, things that worked, things that didn't, if she > vomited, when I called the doctors, what they said, what she ate, everything! > It's great to help keep track of what seems to be going on and great for the > doctors to review if needed. I look at it now and see how very far she has > come. We took pictures also. Caitlin has had red spots, splotches and lines > (almost like someone scratched her). > > At her latest blood draw her numbers are, for the most part, now good. Sed > rate is down, hemoglobin is up, etc. We have learned to live day by day with > this illness. We still want an official diagnosis, but only time will tell > that. > > Caitlin is on quite a few medications for her illness. Have they put your > daughter on anything to help with the pain and the swelling? > > I wish your little Hannah pain free days ahead and hope that you get some > answers soon. > > Do you have other children? I know Caitlin's sisters each had a very > different reaction to her serious illness. Her twin sister, , wanted > Christmas again because "it wasn't much fun because Caitlin was so sick" (she had the > bone marrow the day before too). She also wanted to go to church and pray > for her all the time. Meanwhile, her sister, Alyssa (13), just told her to > "stop her whining". Typical teenager, I guess. > > Take care. > Patty > > >------------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2004 Report Share Posted March 1, 2004 HI Therese, An ASO blood test (Anti-Streptolysin O Titer) checks for a prior strep infection. To see if theres been an untreated bout of strep that has shown up in the blood stream. Hope this helps.. Hugs helen, mom to (6,systemic) Hugs..Helen DH Dan DS's (20)(14)(12)Zachary(9)(6) DD (4)>From: " and Therese Z." >Reply- >>Subject: Re: Questions >Date: Mon, 1 Mar 2004 16:09:09 -0600 > >Patty- >I have hard several people refer to an ASO test. What is that? >Therese > Re: Questions > > > Hi Carey: > > I am glad you found this group. You will find this group to have some of the > most caring, compassionate and informative people! People who have and are > still walking in your shoes! > > My daughter, Caitlin (11), is still not officially diagnosed. She became > very ill in November with a sore throat, fever (105) rash and in such pain that > she couldn't walk. During the two weeks of going back and forth many times to > the peds office, they strep cultured her twice and they were both negative. > However, at the hospital, her ASO test came back positive. She stay in the > hospital for a week and while there, they suspected Rheumatic Fever. Now the > rheumy is looking at Reactive Arthritis or Systemic JRA (Still's). Her cardiology > check up today was perfect and I think RF is out, thankfully. She has had > just about every test done under the sun. Her sed rate was very high (120). It > is now down to normal at 11 YEAH. This just happened in the last two weeks. > She also had a bone marrow biopsy done to check for leukemia. Scary stuff, > but like people have said already, it's a process of ruling out as you go along. > > The waiting is frustrating. I know. We have kept a journal of her everyday > events. Fevers, rash, meds, things that worked, things that didn't, if she > vomited, when I called the doctors, what they said, what she ate, everything! > It's great to help keep track of what seems to be going on and great for the > doctors to review if needed. I look at it now and see how very far she has > come. We took pictures also. Caitlin has had red spots, splotches and lines > (almost like someone scratched her). > > At her latest blood draw her numbers are, for the most part, now good. Sed > rate is down, hemoglobin is up, etc. We have learned to live day by day with > this illness. We still want an official diagnosis, but only time will tell > that. > > Caitlin is on quite a few medications for her illness. Have they put your > daughter on anything to help with the pain and the swelling? > > I wish your little Hannah pain free days ahead and hope that you get some > answers soon. > > Do you have other children? I know Caitlin's sisters each had a very > different reaction to her serious illness. Her twin sister, , wanted > Christmas again because "it wasn't much fun because Caitlin was so sick" (she had the > bone marrow the day before too). She also wanted to go to church and pray > for her all the time. Meanwhile, her sister, Alyssa (13), just told her to > "stop her whining". Typical teenager, I guess. > > Take care. > Patty > > >------------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 In a message dated 3/3/04 4:02:23 PM Eastern Standard Time, carneyval@... writes: << uld be interested to see what the percentages could be and if there was any correlation. Take care! Val Rob's >> It sure does seem that anything can trigger JRA. Maybe something will show a higher incidence. Take care. patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 Hi Patty, Robbie has systemic onset JRA, and his wasn't triggered by a strep infection - though was probably triggered by an ear infection. His MCD was triggered by conjunctivitis - the Nephrologist said that a flare could be triggered by anything that makes the immune system kick in, such as an injury, any type of infection, bee sting or bug bite. I have always thought that the same was true of JRA. Still, it would be interested to see what the percentages could be and if there was any correlation. Take care! Val Rob's Mom (6, systemic) In a message dated 3/1/2004 6:15:12 PM Eastern Standard Time, Emeraldsx3 writes: > > > Very well said Helen. Strep certainly seems to be the 'kick off' to systemic > JRA. I'd be curious to see just who with SoJRA was triggered or flared by > strep. Anyone care to answer if theirs was? We might just > find out something > interesting, ehhh. > > Take care. > Patty > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2004 Report Share Posted April 26, 2004 >>BM's are still fairly non existant without intervention > by me. My constipation ideas http://www.danasview.net/constip.htm Anyway he is on Ritalin, a big no no to a lot of people but it has > made a difference although still not comfortable with the idea. I know > people have had success with various diets for children with ADHD, diet is a > no go area, he already looks half starved on what little he does eat, Enzymes would be a good thing to consider then. > wondering about him simply having some enzymes, Peptizyde is the one I am > thinking about, would I be able to notice a difference even if he stayed on > the Ritalin. Probably. What foods will he currently eat? That makes a difference. Peptizyde is for proteins like gluten/casein [wheat/milk] and soy. Zyme Prime is for many foods, carbs, starches, and some proteins. No-Fenol is for phenol foods like fruits. >> Also the size of tablets still bother me, he can only take a > very small capsule, It is not a " very small " capsule, but not too large either. >> won't chew pills, and will know if stuff is mixed into > food. Any ideas? I open capsules and mix supplements into peanut butter, then spread onto a cracker. I don't hide it into food, this is a separate thing which my kids know they are required to eat. Other ideas here http://www.enzymestuff.com/discussionmixing.htm Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2004 Report Share Posted April 26, 2004 From making a list of foods the other day on another list someone suggested there could be a wheat problem as he eats a lot of that type of product. I have no chance of switching him to much else. That's why I was thinking peptizyde. He doesn't eat any fruit so don't need the No Fenol one. I read your constipation page when i first joined and took a couple of ideas from there like the stool/feet idea, I have already used others like the glycerine suppositories and dulcalax. The only thing I have had any success with are Epson salts which i understand is a laxative and shouldn't be given long term although apparently my great nan used to have a glass a day and never had any problems!! But on the other hand he is at least getting a strong feeling of needing to go and not ignoring it. A few grains of salt have produced more results this past week then a high dose of senna, sodium picasulphate or anything else that doctors have recommended ~Best Wishes~ Ruth Re: Questions | | >>BM's are still fairly non existant without intervention | > by me. | | | My constipation ideas | | http://www.danasview.net/constip.htm | | | Anyway he is on Ritalin, a big no no to a lot of people but it has | > made a difference although still not comfortable with the idea. I know | > people have had success with various diets for children with ADHD, | diet is a | > no go area, he already looks half starved on what little he does eat, | | | Enzymes would be a good thing to consider then. | | | > wondering about him simply having some enzymes, Peptizyde is the one | I am | > thinking about, would I be able to notice a difference even if he | stayed on | > the Ritalin. | | | Probably. What foods will he currently eat? That makes a difference. | Peptizyde is for proteins like gluten/casein [wheat/milk] and soy. | Zyme Prime is for many foods, carbs, starches, and some proteins. | No-Fenol is for phenol foods like fruits. | | | >> Also the size of tablets still bother me, he can only take a | > very small capsule, | | | It is not a " very small " capsule, but not too large either. | | | >> won't chew pills, and will know if stuff is mixed into | > food. Any ideas? | | | I open capsules and mix supplements into peanut butter, then spread | onto a cracker. I don't hide it into food, this is a separate thing | which my kids know they are required to eat. | | Other ideas here | | http://www.enzymestuff.com/discussionmixing.htm | | Dana | | | | Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2004 Report Share Posted April 27, 2004 Hi Ruth As you are probably aware, Ritalin takes the appetite away. I'm not against taking Ritalin, but its probably one of the reasons your child is on the thin side. As far as BM could you get your son to eat salad, spinach or flax seed oil is good too, helps them go . Drinking enough water helps too.. If your not gluten free than s Bran is good if you can sprinkle it on his cereal. I mix supplements with peanut butter or honey it seems to work well around here. We haven't tried the enzyme route here either. My daughter has ADHD also, Ritalin and Adderall made here off the wall ever the tiniest dose. But taking red dye and additives and preservative, low sugar and low phenol helps here too. Hope some of this helps you. K Quote Link to comment Share on other sites More sharing options...
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