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From the beginning — Our 6 yr old son has been diagnosed with IBS & en coup de sabre.We did several months of Methotrexate and it seemed as if the disease progressed rapidly while on it. Everything I researched seemed to bring me to a bacteria and for Michael that fit. . He was the only one of my children to have bad teeth as a toddler when I asked 3 different ” specialist” about the morphea and dental problems being related I was told no—yet I found where a bacteria called Dental Carries, that is related to his type of morphea and it does make the teeth appear rotten also his teeth were not coming back in-in the same order he lost them, at just before 2 yrs of age he was stung or bit by something in the middle of the night that ended us in the ER where he received an antapholactic shot and in less than 24 hrs he ended up needing another one at the pediatricians and it took weeks to really go away, IBS is also an over growth of bacteria in the gut. We are on antibiotic therapy for now, Our pediatrician and I are learning as we go. He’s figuring that if all goes well that we’ll do this for a year or so, but from what I’m reading about Lyme disease-if thats what it is- that may not be how it works, that this may need to be even a longer term than that. At first it didn’t seem important that I prove this one way or another only that I got him the correct treatment now it seeems as if those 2 things may go hand in hand and yes I’m on the right track but I really don’t know how to go about proveing it or even if I can with him being on Antibiotics now. Anyone with advise or insight of any kind please share !!! I should add that sense he’s been on the Ab therapy his severe stomache pain has quit, his rash and constant itching is gone, his mouth has cleared up & one of his top teeth just broke thru, the white cradel cap looking stuff is gone from his head, his atrophy on top doesn’t look as bad and he hasn’t complained of any joint pain, I’d say much improvement !!!
kseevers – just a quick response as I’m about to go to a meeting. Welcome to the Road Back Discussion Forum and I’m sure others will chime in with helpful responses. As a start, I suggest you make use of the search box at the top of the first page to General Discussion (where topics are listed) and type in ‘coup de sabe’ (some people leave out the ‘en’). Quite a few posts on this will come up for you to look through. Hope this helps as a beginning.
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Hi K;
I also have Lyme that caused my SD and from what I have read about 60% of people with Linear/Morphea have lyme also.You can get the test from Igenex which is one of the 3 reliable labs in the U.S(http://www.igenex.com ) or get a CD57 test done.Here is the explanation.http://heallyme.wordpress.com/2009/01/28/understanding-the-cd-57-test/If the results come back normal you will know that it is plain old SD and not Lyme which I hope is the case because dealing with Lyme is a real pain in the —Any biting bug,not just a tick can tranmit it.
LynneHi, as you can see I am a newbie here and not sure if I am doing this in the right spot to ask this question. Does anyone know where I can be properly tested for Lyme disease in Australia? Or can I send for it from elsewhere and what is the cost please? Thanks Jannee 58
Hi Jannee and welcome to the Forum. Usually it’s better to ask a new question by starting a new thread so that it doesnt get overlooked. However, I caught your question and am in Australia!You may be best to join the aussielyme group (it’s a yahoo group). Once signed up, you’ll have access to a number of articles and links about testing. Australian Biologics do PCR testing for Lyme (there’s info about this on the site). But, for the most accurate results, many eventually send their blood to Igenex in the U.S. and there is a piece in the ‘links’ section on the site about how to go about getting the blood there in the shortest space of time possible. This is the link, but you’ll probably have to join the group to access it.
http://au.groups.yahoo.com/group/AussieLyme/message/380
There’s also good information about the various testing methods on the Karl Mcmanus Foundation site:
http://www.karlmcmanusfoundation.org.au/lyme-disease-information/index.php?id=5
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Hi kseevers and I’m glad your son is noticing so many improvements!
The ‘middle of the night’ episode made me think of this:
http://www.peoplespharmacy.com/2011/10/01/830-alpha-gal-allergy/“In some parts of the country, emergency room physicians have been faced with a puzzling scenario: the patient awakens in the middle of the night with unbearable itching, hives, low blood pressure or trouble breathing. Usually, such an anaphylactic reaction is an immediate response to an exposure like an insect sting. But these people have been in bed for hours.
We talk with a patient who had this frightening experience and with the allergist who treated him. We also learn about the discovery of this improbable allergy to red meat, triggered by the bite of a tick.”
Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.
This is all very interesting, Michael doesn’t like red meat and very rarely eats bread infact I get a little frustrated with myself because his diet seems like it’s mostly chicken and rice with whatever vegie I can sneak in. I’ve requested a kit from IGeneX and I’m hopeful and doubtful at the same time simply because Lyme seems so hard to really prove. My mom gut says this disease isn”t done with us yet .
The red meat allergy post a tick bite has been noticed over the past 5 years in Australia
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)I’ve requested a kit from IGeneX and my question is, If it comes back positive do I have to have a LLMD ?
Yes that would be best. You can request a list from one of the U.S. Volunteers (assuming that is where you are)
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)
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