Guest guest Posted April 28, 2009 Report Share Posted April 28, 2009 Doctors in the news media are saying this is an airborne variety...transmitted through respiratory fluids (coughs, sneezes, etc.) and once those respiratory fluids have dried, the contagion dies too...approximately 45 minutes after the sneeze, cough or whatever. They are also saying you cannot get it from ingesting meat products, including 'swine'. I'm not worried at all! > > Hi list, > I just joined and I am eager to get on the road to better health. I seem to take better care of my dogs then myself. Anyway, before I go search for my lab work and ask questions I have one REAL concern at the moment. I had insisted to be put on Armour against my Dr.'s recommendations because all he ever prescribed was Synthroid. So he finally gave in and now I'm concerned about this swine flu thing and having pills that come pigs. Should I be concerned? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2009 Report Share Posted April 28, 2009 I would personally ask the pharmacy for further information. Labs such as Quantum list it on their website: http://healthproducts-usa.com/30secrets.htm " Infectious Prion Exposure " Animal-based organ and glandular products (from commercial animals) carry the risk of infectious prion contamination exposure as well as a greatly increased burden on the kidney and liver to metabolize them. Great concern and fear over " mad cow " disease, which causes spongiform encephalopathy in humans, has now been reported in animals around the world, including the U.S. Recently, mass animal exterminations have been carried out in numerous locations worldwide in an attempt to curtail outbreaks of the disease. In the U.S., the USDA ordered mass exterminations on two sheep farms in Vermont (March, 2001) for fear of spread of the disease to other animals and humans. Products made with constituents from commercial animals (such as organs and glands) now carry the risk of contaminations with toxic prions (infective particles which transmit the disease). The Answer: Due to the widespread risk of prion contamination in commercial animals, the wisest advice is to avoid nutritional products made with constituents from commercial animals (including beef, sheep and pork) as well as avoiding gelatin capsules made from hooves of commercial animals. QNL is the first company to design effective nutritional products that can target and strengthen a specific organ or gland in the human body without using animal by-products, thus avoiding the risk of prion contamination. QNL's unique organ and gland complexes are made with 100% grade 10 herbal and food concentrates and presents a novel approach to target and transport nutrients critical to the body's own healing and recovery systems. A great benefit of this targeted approach is that a specific organ complex can be coupled with another agent, such as an anti-infective herb, so that it can be targeted directly to the same organ. As an example of this targeting approach, Premier Heart Complex, a product used to strengthen the heart, can be taken together with Premier Oleuropein, an anti-infective herbal complex featuring Italian olive leaf extract. Taken together, the anti-infective nutrients can also be targeted to the heart. Similarly, any other powerful anti-infective agent could be targeted to the desired organ or gland systems. Another threat of prion exposure is from animal-derived digestive enzymes which may also contain other toxic tag-along chemicals. In contrast, QNL uses 100% pure, non-animal digestive enzymes (called Quantum Digest), which are specially derived from aspergillus. Unlike other enzyme sources, our enzymes are ultra-purified and filtered by special Japanese technology (not available in the U.S.), so they are 100% free of fungal residue -- a common problem in other enzyme products which can elicit allergic-type reactions. QNL's unique enzyme process uses no heat, which ensures the enzymes are fully biologically active over the broadest range of gastrointestinal pH exposure -- a feature starkly missing in enzyme products extracted with heat. Quantum Lab products are made without the use of toxic tagalongs such as magnesium stearate (hydrogenated oil), calcium stearate (hydrogenated oil), stearic acid (hydrogenated oil), silicon dioxide (common sand), talcum powder (a suspected carcinogen) and other toxic tableting agents or gelatin capsules (made from cow hooves). _____ From: hypothyroidism [mailto:hypothyroidism ] On Behalf Of Roni Molin Sent: Monday, April 27, 2009 11:43 PM hypothyroidism Subject: RE: New member How would I know where they are harvested? I get mine from the pharmacy. Roni <>Just because something isn't seen doesn't mean it's not there<> From: Banta <healthreflection@ <mailto:healthreflection%40fbcom.net> fbcom.net> Subject: RE: New member hypothyroidism@ <mailto:hypothyroidism%40> Date: Monday, April 27, 2009, 9:08 PM Depends on how and where the organs were harvested. if it says China. run! You may want to consider http://healthproduc <http://healthproducts-usa.com/30thyroidcomplexinfo.htm> ts-usa.com/30thyroidcomplexinfo.htm _____ From: hypothyroidism@ <mailto:hypothyroidism%40> [mailto:hypothyroidism@ <mailto:hypothyroidism%40> ] On Behalf Of beaucerongirl101 Sent: Sunday, April 26, 2009 1:12 PM hypothyroidism@ <mailto:hypothyroidism%40> Subject: New member Hi list, I just joined and I am eager to get on the road to better health. I seem to take better care of my dogs then myself. Anyway, before I go search for my lab work and ask questions I have one REAL concern at the moment. I had insisted to be put on Armour against my Dr.'s recommendations because all he ever prescribed was Synthroid. So he finally gave in and now I'm concerned about this swine flu thing and having pills that come pigs. Should I be concerned? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2009 Report Share Posted April 28, 2009 Roni, You wrote: > > Wow, I never thought of that. Chuck, what do you think? Doubtful. The animals are inspected and certified free of common infectious agents. Dr. Lowe recently posted an explanation about this on his web site. They would be more worried about the bacon and ham, so the parts selected for Armour should be well screened. The bug causing all the trouble is being transmitted by humans, although it started with pigs. Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2009 Report Share Posted April 28, 2009 Well, that's a relief. Roni <>Just because something isn't seen doesn't mean it's not there<> > > Wow, I never thought of that. Chuck, what do you think? Doubtful. The animals are inspected and certified free of common infectious agents. Dr. Lowe recently posted an explanation about this on his web site. They would be more worried about the bacon and ham, so the parts selected for Armour should be well screened. The bug causing all the trouble is being transmitted by humans, although it started with pigs. Chuck ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2009 Report Share Posted July 31, 2009 Lucia, You wrote: > > My problem is that I have a few micro nodules on my thyroid and the > doctor put me on Euthyrox of 25 mg, each morning. I do not like how the > medication makes me feel .... Please share the specific test results with reference ranges, as these vary between labs. " Normal " is so vague as to be meaningless. Euthyrox is a generic for Synthroid (levothyroxine, synthetic T4), which is made by Merck (Germany) but sold world wide. A 25 mcg per day dose is pretty minimal. If it is causing hyperthyroid symptoms, please tell your doctor immediately. Ordinarily, +/- 25 mcg could not be life threatening, but the problem may actually be in the nodules rather than the medication. This will depend on whether they are producing or not. Unfortunately, telling the difference can require a fairly involved test (radioactive iodine uptake). My son went through all of this just a few months ago. His nodules were found to be benign and not producing, so he is now on 37 mcg. His test results were all in the " normal " range, both before and after treatment. Please be specific. Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2009 Report Share Posted July 31, 2009 Hi, Lucia. Two things: 1] 25 mcg is so low I'm surprised you can even detect it; 2] If anyone ever finds any credible research that shows any beneficial results for any homeopathic remedy greater than chance or placebo I'd appreciate a link. Luck, .. .. > Posted by: " Lucia " lucia_n36@... > <mailto:lucia_n36@...?Subject=%20Re%3ANew%20Member> > lucia_n36 <lucia_n36> > > > Thu Jul 30, 2009 8:33 pm (PDT) > > > > I would like to say a few words to thank you for having me here, in > this group. I was sent here by someone on another group and I am glad > I found you. > My problem is that I have a few micro nodules on my thyroid and the > doctor put me on Euthyrox of 25 mg, each morning. I do not like how > the medication makes me feel and I would like to find some alternative > remedies. I mention that according to my blood tests my thyroid > funtions normally. My question is: is this medicine necessary for me > to take? I would like to use some homeopathic remedies. Any suggestion? > Be well, > Lucia > P.S. I am 57 years old. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2009 Report Share Posted September 23, 2009 , I'm so sorry about the Dx you've gotten! And at such a young, promising age! My youngest son is your age, and I know this must be hell for your parents, too. Have you been given a treatment plan yet, to prolong your ability to stay out of the chair? Or does anything you do have a chance of making a difference? I don't know much about MSA, so these may seem goofy questions. I'll be wishing you well, and am glad you're here. Please pass along a good word to your parents, too. It sounds as though they love you very much and want to help in any way they can, which is what good parents always try to do. All best, > > Hi there >  > I am new to this group i thought i would do a intro well My name is i am 19 years olod i live in Manchester in England about a year ago mum and dad noticed something was not right with me i was always getting tired and i would find it hard walking. After and few weeks mum and dad said i should go and see a doctor i have been under going lots and lots of tests last month i was digeniosed with SMA. > (This is a clip off the internet) >  Spinal muscular atrophy (SMA) is a genetic disease that affects muscle movement. It causes the motor neurons in an area of the spinal cord called the anterior horn to deteriorate. Motor neurons are nerve cells in the spinal cord that send impulses to the muscles, telling them to expand or contract. The deterioration of the motor neurons gradually breaks the link between the brain and the muscles that this part of the spinal cord controls. As the link is broken, the muscles - used for activities such as crawling, walking, sitting up and moving the head - are used less and less and so become weaker, or shrink (atrophy). >  > So the outlook is not that good for me so i have come on hear to meet people and make friends i will need long term care in a few months mum and dad are planing and makeing a bigger room for me downstaris now i have started to have mussle weakness all ready i am in diapers and have no bladder or bowle controll. I will need to have a wheelchair i have a old one at the moment but mum and dad are going to get a very good one that will help me get around. Mum and dad are very suppotive to me and look after me very well. Please feal free to IM me on l Messanger and we can chat. Thanks >  >  > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2009 Report Share Posted September 28, 2009 Welcome, Meredith. I've found this group to be a great resource for both information and support. How long do you think you've had lyme? And most probably many or most of the " unexplained " symptoms can definitely be explained by lyme. Knee problems are very common, muscle/joint pain/weakness as well as a whole host of other symptoms - which vary from person to person. Is your doc an llmd (lyme literate medical doctor)? How were you dx'd with lyme? Pardon all the questions - I'm just curious since all of us come at it from different places. On Sun, Sep 27, 2009 at 7:55 PM, no longer a fan <merlodge@...> wrote: > > > I am a new member. I was dx Fri with lyme. I do not know anything more than > that. > > I have a long list of disgnosed things (water on the knee, achilles > tendonitis and so much more...) without causes and I wonder if now the cause > has been found. > > I am very overwhelmed by all the info out there but I am ok with that. I > will become more familiar and I will figure it all out. First I have to find > out what I exactly have or the blood work has showed. I am thankful for this > group. > > Thanks, > > Meredith > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2009 Report Share Posted December 12, 2009 Allan, Hate to be the bearer of bad news, but the surgeon is most likely telling you the truth. Do you recall if he used the term myolapathy? My husband had 3 opinions before we finally believed what the Dr's were saying. When the cervical spine is severely compressed, there is no other option than surgery. The good news is, an anterior ACDF isn't that bad of a surgery. Get more opinions before getting the laminectomy. That surgery is more painful and a couple Doctors said it was an " old fashioned " way of taking care of the problem. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2009 Report Share Posted December 13, 2009 In a message dated 12/13/2009 9:28:29 A.M. Eastern Standard Time, vendetta33@... writes: My surgeon told me the same thing about being in an auto accident, but said it after surgery. I don't drive much since it increases my pain, and being a passenger is even worse, but I am still aware of that warning all the time. My husband was told to have the surgery so he would not become paralyzed. I thought once the surgery is done, the risk is over. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2009 Report Share Posted December 13, 2009 Welcome, Alan. I agree with rinninwind: if the surgeon mentioned mylopathy, you shouldn't wait too long. Getting a second opinion is a good idea, but if mylopathy is involved, progressive (and permanent) damage can occur. I'm guessing the issues are complex enough that they can't get at them all with just one surgery or from the anterior approach? I've only had a diskectomy/laminectomy at C6-7, so don't have any fusion experience to share; surgeon didn't want to do it because I was " too young " at the time (38). It's true that laminectomy has quite a long recovery time, in my own experience. Cutting through the muscle is no small issue to deal with; I wasn't allowed to lift more than 5lbs for several months. 3.5 years post surgery and I've again got disc bulging, arthritis and nerve impingement in the same places as were operated on (some not as severe yet, some worse, some exactly the same as before) so am dealing with quite a bit of nerve pain myself in addition to arthritis/disc pain. Fusion might prevent all that, though other members here could better address that. My surgeon told me the same thing about being in an auto accident, but said it after surgery. I don't drive much since it increases my pain, and being a passenger is even worse, but I am still aware of that warning all the time. I wonder if, like some other folks, you'll get lower back relief when your neck is taken care of. It happens to some... You didn't mention what issues you have in your lumbar spine. Anything you'd want to share? Anyway, welcome to the group, but sorry that you had need of it! > > Hello All, > > I'm Alan. 60 years old. Diagnosed with lumbar and cervical stenosis. Neurosurgeon wants to do neck surgery - remove old discs and fuse vertebrae, then come back in some months and do cervical lamenectomy. He says my neck is too screwed up to consider lumbar surgery at this time - says there's spinal cord constriction in the neck and it's so bad that if i got in a minor car accident i could be paralyzed..... > > I think he's too damned eager to operate! The pain seems reasonably manageable with robaxin and vicoden. > > Any advice or experience is welcome. > > Alan > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2009 Report Share Posted December 14, 2009 Dear Group, Approaching my 1 year fusion and determined to continue living my life I would like to add that the most alarming part of your post Alan appears to me to be about the I could be paralyzed part. Consider that part a little longer and then educate yourself through legitimate sites on the good/bad and reasonable expectations to your health. I'm a believer in working the problem and just ran a 5K race this past October! Gook luck to all in our group. > > > > Hello All, > > > > I'm Alan. 60 years old. Diagnosed with lumbar and cervical stenosis. Neurosurgeon wants to do neck surgery - remove old discs and fuse vertebrae, then come back in some months and do cervical lamenectomy. He says my neck is too screwed up to consider lumbar surgery at this time - says there's spinal cord constriction in the neck and it's so bad that if i got in a minor car accident i could be paralyzed..... > > > > I think he's too damned eager to operate! The pain seems reasonably manageable with robaxin and vicoden. > > > > Any advice or experience is welcome. > > > > Alan > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2009 Report Share Posted December 14, 2009 alan, It's not clear what advice you are seeking. It seems to me that you have already made up your mind...perhaps, are you looking at convincing? If you sense that the doc is too eager to cut, then he probably is. Trust your gut! You know more about your own body than any other person, including specialized doctors. Stenosis doesn't happen overnight, so at your age, you've been living a good amout of time with it. Plus, you have found a simple way to reasonably manage the pain. Robaxin & Vicodin for stenosis? This is magnificant! So then exactly what is the rush? Continue to take the time to make an informed decision. That is, if you need to decide something. If I was in your position, I would not need to decide anything. I would just continue with those meds. I probably wouldn't have even gone to a neurosurgeon if I was being reasonably treated by a general practicioner. dave  ________________________________ From: Alan <alrond999@...> spinal problems Sent: Sat, December 12, 2009 4:48:13 PM Subject: New Member  Hello All, I'm Alan. 60 years old. Diagnosed with lumbar and cervical stenosis. Neurosurgeon wants to do neck surgery - remove old discs and fuse vertebrae, then come back in some months and do cervical lamenectomy. He says my neck is too screwed up to consider lumbar surgery at this time - says there's spinal cord constriction in the neck and it's so bad that if i got in a minor car accident i could be paralyzed... .. I think he's too damned eager to operate! The pain seems reasonably manageable with robaxin and vicoden. Any advice or experience is welcome. Alan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2009 Report Share Posted December 14, 2009 In my case it was because of other issues with my neck that weren't addressed by the surgery. I only had one level worked on. My guess is that your husband had some progressive myelopathy, right? That does need to be taken care of right away. I have a not so wonderful complex of situations in my neck that contribute to the warning I got to be careful. Loss of lordosis and scoliosis are two contributors, along with prominent spurring in a few places. I also have a movement disorder that causes constantly spasmed muscles and also adds to the mix. At any rate, any one of us could be paralyzed in an auto accident, even with a perfectly healthy spine--it's just worse odds in some of us. Sorry I didn't explain it well before, or now. I'm not having a good time sitting at PC lately and have been rushed to get back away from it. Pain is NOT my friend! All best, p.s. Does anyone know where is? Seems like a very long time since she's been around! > > > > In a message dated 12/13/2009 9:28:29 A.M. Eastern Standard Time, > vendetta33@... writes: > > My surgeon told me the same thing about being in an auto accident, but > said it after surgery. I don't drive much since it increases my pain, and > being a passenger is even worse, but I am still aware of that warning all the > time. > > My husband was told to have the surgery so he would not become paralyzed. > I thought once the surgery is done, the risk is over. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2009 Report Share Posted December 16, 2009 Hi. I went to see a doctor because my fingertip was getting a little numb. Didn't have any pain to have to manage. Got referred to a very astute neurologist who trotted me thru an MRI the same day I saw her. Had some spinal stenosis. Was in surgery the next day. Stenosis was there because my neck was BROKEN. I live a fairly quiet life, never had a neck injury- the vertebra just fell apart, dunno why. The neurosurgeon, neurologist, and consulting neurosurgeon all agreed that by the time I hit surgery, I prolly had less than 24 hours left before it all slid too far, even with the neck brace on. Would've cut my spinal cord at the C3/4 level. Would've killed me. I got a good look at my scan. They weren't lying. Had a bunch of bits removed, a bunch of plates and screws, some donor bone installed, a disc or two removed, some fusion. I'm fine now, except for left hand being partially paralyzed. Sure beats what almost happened. Moral of my story: This is serious. Don't piddle around with it too very long. Get it done while you still have a chance. LCB > > Hello All, > > I'm Alan. 60 years old. Diagnosed with lumbar and cervical stenosis. Neurosurgeon wants to do neck surgery - remove old discs and fuse vertebrae, then come back in some months and do cervical lamenectomy. He says my neck is too screwed up to consider lumbar surgery at this time - says there's spinal cord constriction in the neck and it's so bad that if i got in a minor car accident i could be paralyzed..... > > I think he's too damned eager to operate! The pain seems reasonably manageable with robaxin and vicoden. > > Any advice or experience is welcome. > > Alan > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2010 Report Share Posted January 3, 2010 : Welcome to our little corner of hell! Seriously, you're in for a longer, stranger trip than you probably realize right now. The good news is that there are a lot of people here who've walked that path, and I think most of us would say that we'd never have made it if it weren't for what we learned here. A few things you need to know right off... The bad news -- the worst of all -- is that your orthopedist and your rheumatologist will not, in all likelihood, know the first thing about curing your Lyme. They will give you a month of a single antibiotic, which almost certainly won't do the job (I can say this with some certainty because you have clear symptoms of both neurological and cardiac Lyme, which indicates that you've had it a good long while, and it's entrenched itself deeply in your system). You need to locate a Lyme-literate doctor, preferably one who is a member of ILADS, who will undertake the comprehensive treatment needed to really manage and shake off the disease. And because Lyme is a deeply political disease, these doctors typically don't take insurance, so this is going to run to some money. The good news is that your Lupus symptoms, cardiomyopathy, and POTS are all very probably directly caused by the Lyme, and will likely clear up when the Lyme is properly treated. (Personal experience speaking: I had cardiomyopathy, POTS, and different but similar autoimmune issues that all abated with treatment.) The " 3 out of 9 " was probably a reference to the bands on your Western Blot test. There are nine bands that indicate the presence of Lyme; you lit up on three of them. Some of these bands are more clearly indicative than others; obviously, at least one or two of the ones on your test were very strong indicators. You need information, and you need it now. Books to acquire include: Cure Unknown 10 Best Lyme Disease Treatments Everything You Need to Know about Living With Lyme Disease And a video: Under Our Skin Websites to consult now: <http://www.lisasimone.net/images/pdfs/B_guidelines_12_17_08.pdf> <http://www.ilads.org/> <www.calda.org> Holler with any questions. We're here with an ear. Sara On Jan 3, 2010, at 4:31 13PM, wrote: > I was recently told that I tested positive for Lyme Disease and Lupus according to the blood test results done by mt orthopedic doctor. I go to see a rheumatologist this coming Friday. He said that the Lyme test came back 3 out of 9 positive. Can anyone explain that to me? I can't seem to find much on the web and I find it kind of hard to believe that I have both. Just a little background on me. I just turned 30 in late November. I am married and have a 3 year old son. I live in CT. I also was diagnosed with cardiomyopathy July of theis year and postural orthostatic tachycardia syndrome last month. > > > > > > ------------------------------------ > > Lyme Disease News continually updated from thousands of sources around the > net: http://www.topix.net/health/lyme-disease > > MedWorm: The latest items on: Lyme Disease > http://tinyurl.com/23dgy8 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2010 Report Share Posted January 3, 2010  Thanks so much. Your email actually has brought great relief to know that maybe all of my problems could have one answer. I was in good health until one day when I had some chest pain then it went into my shoulder and neck. I thought this can't be just stress. I found out that I had pericarditis and then they found the cardiomyopathy. Thinking back July of 2008 I went to the ER for what they said was a " spider bite " I had severe inflamation for a bite to my elbow that was about 10-12 inches long. I had a 103 fever and a heart rate of 170. Maybe that was actually a tick bite. I guess I will never know. I moved from the city to a small town called Wolcott. We do have quite a bit of ticks out here. Lots of deer and wooded areas. I already see that this group will be alot of comfort!  Thanks From: Sara <srobinson@...> Subject: Re: [ ] new member Date: Sunday, January 3, 2010, 8:36 PM  : Welcome to our little corner of hell! Seriously, you're in for a longer, stranger trip than you probably realize right now. The good news is that there are a lot of people here who've walked that path, and I think most of us would say that we'd never have made it if it weren't for what we learned here. A few things you need to know right off... The bad news -- the worst of all -- is that your orthopedist and your rheumatologist will not, in all likelihood, know the first thing about curing your Lyme. They will give you a month of a single antibiotic, which almost certainly won't do the job (I can say this with some certainty because you have clear symptoms of both neurological and cardiac Lyme, which indicates that you've had it a good long while, and it's entrenched itself deeply in your system). You need to locate a Lyme-literate doctor, preferably one who is a member of ILADS, who will undertake the comprehensive treatment needed to really manage and shake off the disease. And because Lyme is a deeply political disease, these doctors typically don't take insurance, so this is going to run to some money. The good news is that your Lupus symptoms, cardiomyopathy, and POTS are all very probably directly caused by the Lyme, and will likely clear up when the Lyme is properly treated. (Personal experience speaking: I had cardiomyopathy, POTS, and different but similar autoimmune issues that all abated with treatment.) The " 3 out of 9 " was probably a reference to the bands on your Western Blot test. There are nine bands that indicate the presence of Lyme; you lit up on three of them. Some of these bands are more clearly indicative than others; obviously, at least one or two of the ones on your test were very strong indicators. You need information, and you need it now. Books to acquire include: Cure Unknown 10 Best Lyme Disease Treatments Everything You Need to Know about Living With Lyme Disease And a video: Under Our Skin Websites to consult now: <http://www.lisasimo ne.net/images/ pdfs/B_guideline s_12_17_08. pdf> <http://www.ilads. org/> <www.calda.org> Holler with any questions. We're here with an ear. Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2010 Report Share Posted January 4, 2010 , not sure on the test results, but I just wanted to say hi and good luck, I have a 4 year old, and was diagnosed with lots of things before they found the lymes, one of which is sinus tachycardia caused by lyme. Welcome, and good luck! Bridget > > I was recently told that I tested positive for Lyme Disease and Lupus according to the blood test results done by mt orthopedic doctor. I go to see a rheumatologist this coming Friday. He said that the Lyme test came back 3 out of 9 positive. Can anyone explain that to me? I can't seem to find much on the web and I find it kind of hard to believe that I have both. Just a little background on me. I just turned 30 in late November. I am married and have a 3 year old son. I live in CT. I also was diagnosed with cardiomyopathy July of theis year and postural orthostatic tachycardia syndrome last month. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2010 Report Share Posted January 4, 2010 Cardiac Lyme is common as dirt in patients who've had the disease for more than a couple years -- it's one of the later of the late-stage symptoms. (For most people who die of Lyme, congestive heart failure was a major contributing cause of death.) The spirochete infects the myocardium, creating symptoms that are virtually indistinguishable from diastolic congestive heart failure. Unfortunately, most cardiologists aren't familiar with cardiac Lyme, and are thus very confused when stress ECGs don't show the typical CHF left ventricle stretching; and when angiograms show no blockages whatsoever. (This happened to me.) You've got all the symptoms and disabilities; but none of the structural causes that they expect to see. And yet the heart is misbehaving badly. All they can do at that point is shrug and refer you to a shrink. POTS is caused by Lyme's effects on the hypothalamus/pituitary/adrenal (HPA) axis, which controls blood volume, among other things. Lyme loves the collagen in all three structures, and a heavy infection will disrupt the body's ability to maintain blood volume. By and by, you're literally running a quart low. This makes the blood thicky and sticky, creating a host of circulation-related problems; and that leads to the syncope and light-headedness of POTS. You just don't have enough blood on board to feed your head while you're standing. Lyme mimics Lupus because our immune systems up-regulate to vanquish the bug. Unfortunately, since Lyme has several effective ways of hiding from the immune system, our bodies will go into permanent overdrive trying to find it. This up-regulation creates a host of autoimmune disorders, since a redlining immune system will tend to get very stupid over time and start going after stuff it's not supposed to -- stuff like routine foods and " safe " chemicals (creating food allergies and MCS symptoms), our own organs (leading to hypothyroid and hypoadrenal problems), and so on. To a doctor who doesn't know what Lyme looks like, some of these symptoms can look very much like Lupus. So, if you can clear the Lyme, you may see considerable progress on all these fronts. I've been under treatment for 16 months, and both the cardiac symptoms and the POTS were gone in the first three or four months. The autoimmune stuff faded more slowly, but it's going away, too. Your mileage will no doubt vary; but your Lyme diagnosis is actually a good reason to hold out hope that most of this can eventually be managed or cured. Sara On Jan 3, 2010, at 7:30 09PM, Chiaravalloti wrote: > > Thanks so much. Your email actually has brought great relief to know that maybe all of my problems could have one answer. I was in good health until one day when I had some chest pain then it went into my shoulder and neck. I thought this can't be just stress. I found out that I had pericarditis and then they found the cardiomyopathy. Thinking back July of 2008 I went to the ER for what they said was a " spider bite " I had severe inflamation for a bite to my elbow that was about 10-12 inches long. I had a 103 fever and a heart rate of 170. Maybe that was actually a tick bite. I guess I will never know. I moved from the city to a small town called Wolcott. We do have quite a bit of ticks out here. Lots of deer and wooded areas. I already see that this group will be alot of comfort! > > Thanks > > > > > > From: Sara <srobinson@...> > Subject: Re: [ ] new member > > Date: Sunday, January 3, 2010, 8:36 PM > > > > > > > : Welcome to our little corner of hell! Seriously, you're in for a longer, stranger trip than you probably realize right now. The good news is that there are a lot of people here who've walked that path, and I think most of us would say that we'd never have made it if it weren't for what we learned here. > > A few things you need to know right off... > > The bad news -- the worst of all -- is that your orthopedist and your rheumatologist will not, in all likelihood, know the first thing about curing your Lyme. They will give you a month of a single antibiotic, which almost certainly won't do the job (I can say this with some certainty because you have clear symptoms of both neurological and cardiac Lyme, which indicates that you've had it a good long while, and it's entrenched itself deeply in your system). You need to locate a Lyme-literate doctor, preferably one who is a member of ILADS, who will undertake the comprehensive treatment needed to really manage and shake off the disease. And because Lyme is a deeply political disease, these doctors typically don't take insurance, so this is going to run to some money. > > The good news is that your Lupus symptoms, cardiomyopathy, and POTS are all very probably directly caused by the Lyme, and will likely clear up when the Lyme is properly treated. (Personal experience speaking: I had cardiomyopathy, POTS, and different but similar autoimmune issues that all abated with treatment.) > > The " 3 out of 9 " was probably a reference to the bands on your Western Blot test. There are nine bands that indicate the presence of Lyme; you lit up on three of them. Some of these bands are more clearly indicative than others; obviously, at least one or two of the ones on your test were very strong indicators. > > You need information, and you need it now. Books to acquire include: > > Cure Unknown > 10 Best Lyme Disease Treatments > Everything You Need to Know about Living With Lyme Disease > > And a video: > Under Our Skin > > Websites to consult now: > <http://www.lisasimo ne.net/images/ pdfs/B_guideline s_12_17_08. pdf> > <http://www.ilads. org/> > <www.calda.org> > > Holler with any questions. We're here with an ear. > > Sara > > > > ------------------------------------ > > Lyme Disease News continually updated from thousands of sources around the > net: http://www.topix.net/health/lyme-disease > > MedWorm: The latest items on: Lyme Disease > http://tinyurl.com/23dgy8 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2010 Report Share Posted January 4, 2010 Thank you for this email. It was very helpful. I went through cardiac testing because of my persistent tachycardia & high blood pressure. I was so frustrated. The cardiologists didn't know what was wrong and said it was probably POTS. Then the cardiologist said it might be sinus tachycardia.   Anyway, my LLMD put me on IV Rocephin last week and amazingly my blood pressure has been normal for the past few days and I haven't had tachycardia. My family even said that my face wasn't as swollen as it was the week before. It was like someone turned on a light and my heart wasn't racing anymore. I have had fluctuating high blood pressure and tachycardia for 2 years while on blood pressure medication.  Keep on your journey...it will get better.    Ann ________________________________ From: Sara <srobinson@...> Sent: Mon, January 4, 2010 11:33:38 AM Subject: Re: [ ] new member Cardiac Lyme is common as dirt in patients who've had the disease for more than a couple years -- it's one of the later of the late-stage symptoms. (For most people who die of Lyme, congestive heart failure was a major contributing cause of death.) The spirochete infects the myocardium, creating symptoms that are virtually indistinguishable from diastolic congestive heart failure. Unfortunately, most cardiologists aren't familiar with cardiac Lyme, and are thus very confused when stress ECGs don't show the typical CHF left ventricle stretching; and when angiograms show no blockages whatsoever. (This happened to me.) You've got all the symptoms and disabilities; but none of the structural causes that they expect to see. And yet the heart is misbehaving badly. All they can do at that point is shrug and refer you to a shrink. POTS is caused by Lyme's effects on the hypothalamus/pituitary/adrenal (HPA) axis, which controls blood volume, among other things. Lyme loves the collagen in all three structures, and a heavy infection will disrupt the body's ability to maintain blood volume. By and by, you're literally running a quart low. This makes the blood thicky and sticky, creating a host of circulation-related problems; and that leads to the syncope and light-headedness of POTS. You just don't have enough blood on board to feed your head while you're standing. Lyme mimics Lupus because our immune systems up-regulate to vanquish the bug. Unfortunately, since Lyme has several effective ways of hiding from the immune system, our bodies will go into permanent overdrive trying to find it. This up-regulation creates a host of autoimmune disorders, since a redlining immune system will tend to get very stupid over time and start going after stuff it's not supposed to -- stuff like routine foods and " safe " chemicals (creating food allergies and MCS symptoms), our own organs (leading to hypothyroid and hypoadrenal problems), and so on. To a doctor who doesn't know what Lyme looks like, some of these symptoms can look very much like Lupus. So, if you can clear the Lyme, you may see considerable progress on all these fronts. I've been under treatment for 16 months, and both the cardiac symptoms and the POTS were gone in the first three or four months. The autoimmune stuff faded more slowly, but it's going away, too. Your mileage will no doubt vary; but your Lyme diagnosis is actually a good reason to hold out hope that most of this can eventually be managed or cured. Sara On Jan 3, 2010, at 7:30 09PM, Chiaravalloti wrote: > > Thanks so much. Your email actually has brought great relief to know that maybe all of my problems could have one answer. I was in good health until one day when I had some chest pain then it went into my shoulder and neck. I thought this can't be just stress. I found out that I had pericarditis and then they found the cardiomyopathy. Thinking back July of 2008 I went to the ER for what they said was a " spider bite " I had severe inflamation for a bite to my elbow that was about 10-12 inches long. I had a 103 fever and a heart rate of 170. Maybe that was actually a tick bite. I guess I will never know. I moved from the city to a small town called Wolcott. We do have quite a bit of ticks out here. Lots of deer and wooded areas. I already see that this group will be alot of comfort! > > Thanks > > > > > > From: Sara <srobinson@...> > Subject: Re: [ ] new member > > Date: Sunday, January 3, 2010, 8:36 PM > > > > > > > : Welcome to our little corner of hell! Seriously, you're in for a longer, stranger trip than you probably realize right now. The good news is that there are a lot of people here who've walked that path, and I think most of us would say that we'd never have made it if it weren't for what we learned here. > > A few things you need to know right off... > > The bad news -- the worst of all -- is that your orthopedist and your rheumatologist will not, in all likelihood, know the first thing about curing your Lyme. They will give you a month of a single antibiotic, which almost certainly won't do the job (I can say this with some certainty because you have clear symptoms of both neurological and cardiac Lyme, which indicates that you've had it a good long while, and it's entrenched itself deeply in your system). You need to locate a Lyme-literate doctor, preferably one who is a member of ILADS, who will undertake the comprehensive treatment needed to really manage and shake off the disease. And because Lyme is a deeply political disease, these doctors typically don't take insurance, so this is going to run to some money. > > The good news is that your Lupus symptoms, cardiomyopathy, and POTS are all very probably directly caused by the Lyme, and will likely clear up when the Lyme is properly treated. (Personal experience speaking: I had cardiomyopathy, POTS, and different but similar autoimmune issues that all abated with treatment.) > > The " 3 out of 9 " was probably a reference to the bands on your Western Blot test. There are nine bands that indicate the presence of Lyme; you lit up on three of them. Some of these bands are more clearly indicative than others; obviously, at least one or two of the ones on your test were very strong indicators. > > You need information, and you need it now. Books to acquire include: > > Cure Unknown > 10 Best Lyme Disease Treatments > Everything You Need to Know about Living With Lyme Disease > > And a video: > Under Our Skin > > Websites to consult now: > <http://www.lisasimo ne.net/images/ pdfs/B_guideline s_12_17_08. pdf> > <http://www.ilads. org/> > <www.calda.org> > > Holler with any questions. We're here with an ear. > > Sara > > > > ------------------------------------ > > Lyme Disease News continually updated from thousands of sources around the > net: http://www.topix.net/health/lyme-disease > > MedWorm: The latest items on: Lyme Disease > http://tinyurl.com/23dgy8 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2010 Report Share Posted January 4, 2010 Thanks so much. So do you think that a rheumatologist won't know enough? > > > From: Sara <srobinson@cosmiccow grrl.com> > Subject: Re: [ ] new member > @group s.com > Date: Sunday, January 3, 2010, 8:36 PM > > > > > > > : Welcome to our little corner of hell! Seriously, you're in for a longer, stranger trip than you probably realize right now. The good news is that there are a lot of people here who've walked that path, and I think most of us would say that we'd never have made it if it weren't for what we learned here. > > A few things you need to know right off... > > The bad news -- the worst of all -- is that your orthopedist and your rheumatologist will not, in all likelihood, know the first thing about curing your Lyme. They will give you a month of a single antibiotic, which almost certainly won't do the job (I can say this with some certainty because you have clear symptoms of both neurological and cardiac Lyme, which indicates that you've had it a good long while, and it's entrenched itself deeply in your system). You need to locate a Lyme-literate doctor, preferably one who is a member of ILADS, who will undertake the comprehensive treatment needed to really manage and shake off the disease. And because Lyme is a deeply political disease, these doctors typically don't take insurance, so this is going to run to some money. > > The good news is that your Lupus symptoms, cardiomyopathy, and POTS are all very probably directly caused by the Lyme, and will likely clear up when the Lyme is properly treated. (Personal experience speaking: I had cardiomyopathy, POTS, and different but similar autoimmune issues that all abated with treatment.) > > The " 3 out of 9 " was probably a reference to the bands on your Western Blot test. There are nine bands that indicate the presence of Lyme; you lit up on three of them. Some of these bands are more clearly indicative than others; obviously, at least one or two of the ones on your test were very strong indicators. > > You need information, and you need it now. Books to acquire include: > > Cure Unknown > 10 Best Lyme Disease Treatments > Everything You Need to Know about Living With Lyme Disease > > And a video: > Under Our Skin > > Websites to consult now: > <http://www.lisasimo ne.net/images/ pdfs/B_guideline s_12_17_08. pdf> > <http://www.ilads. org/> > <www.calda.org> > > Holler with any questions. We're here with an ear. > > Sara > > > > ------------ --------- --------- ------ > > Lyme Disease News continually updated from thousands of sources around the > net: http://www.topix. net/health/ lyme-disease > > MedWorm: The latest items on: Lyme Disease > http://tinyurl. com/23dgy8 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2010 Report Share Posted January 4, 2010 Rheumatologists see plenty of Lyme arthritis, and many of them do recognize it when they see it. But most of them only know what a rheumatologist needs to know, which is pretty limited. They are by no means specialists in treating the disease -- for that, you need someone for whom Lyme is their first and only specialty. (Note that this criterion also lets out traditional infectious disease doctors, who also have a very limited view of the disease.) Lyme is multi-systemic, which means that any of these doctors is like one of the blind men feeling the elephant. They only know about the part they're grasping. LLMDs, on the other hand, see the whole elephant -- and that's why we're pretty emphatic here that you need to get yourself in to see one, and soon. Sara On Jan 4, 2010, at 3:30 37PM, Chiaravalloti wrote: > Thanks so much. So do you think that a rheumatologist won't know enough? > > >> >> >> From: Sara <srobinson@cosmiccow grrl.com> >> Subject: Re: [ ] new member >> @group s.com >> Date: Sunday, January 3, 2010, 8:36 PM >> >> >> >> >> >> >> : Welcome to our little corner of hell! Seriously, you're in for a longer, stranger trip than you probably realize right now. The good news is that there are a lot of people here who've walked that path, and I think most of us would say that we'd never have made it if it weren't for what we learned here. >> >> A few things you need to know right off... >> >> The bad news -- the worst of all -- is that your orthopedist and your rheumatologist will not, in all likelihood, know the first thing about curing your Lyme. They will give you a month of a single antibiotic, which almost certainly won't do the job (I can say this with some certainty because you have clear symptoms of both neurological and cardiac Lyme, which indicates that you've had it a good long while, and it's entrenched itself deeply in your system). You need to locate a Lyme-literate doctor, preferably one who is a member of ILADS, who will undertake the comprehensive treatment needed to really manage and shake off the disease. And because Lyme is a deeply political disease, these doctors typically don't take insurance, so this is going to run to some money. >> >> The good news is that your Lupus symptoms, cardiomyopathy, and POTS are all very probably directly caused by the Lyme, and will likely clear up when the Lyme is properly treated. (Personal experience speaking: I had cardiomyopathy, POTS, and different but similar autoimmune issues that all abated with treatment.) >> >> The " 3 out of 9 " was probably a reference to the bands on your Western Blot test. There are nine bands that indicate the presence of Lyme; you lit up on three of them. Some of these bands are more clearly indicative than others; obviously, at least one or two of the ones on your test were very strong indicators. >> >> You need information, and you need it now. Books to acquire include: >> >> Cure Unknown >> 10 Best Lyme Disease Treatments >> Everything You Need to Know about Living With Lyme Disease >> >> And a video: >> Under Our Skin >> >> Websites to consult now: >> <http://www.lisasimo ne.net/images/ pdfs/B_guideline s_12_17_08. pdf> >> <http://www.ilads. org/> >> <www.calda.org> >> >> Holler with any questions. We're here with an ear. >> >> Sara >> >> >> >> ------------ --------- --------- ------ >> >> Lyme Disease News continually updated from thousands of sources around the >> net: http://www.topix. net/health/ lyme-disease >> >> MedWorm: The latest items on: Lyme Disease >> http://tinyurl. com/23dgy8 >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2010 Report Share Posted January 5, 2010 Sara, You have a wonderful way of explaining things, as usual! I wanted to second your comment about the cardiac and POTS stuff occuring earlier in treatment. I also have been in treatment for 16 months and my cardiac symptoms were all in the first 3 months of treatment. I did relapse last August and for a couple months the lightheadedness came back for a couple weeks but the tachycardia did not return, thankfully. Its one thing to deal with all these Lyme symptoms but when it starts messing with your heart its scary! - Re: [ ] new member ://. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2010 Report Share Posted January 5, 2010 My 14 year old daughter has been going to a rheumatologist (sp sorry) for the last five years or so at the Children's Hosp - she was diagnosed with JRA back five years ago - he called himself a lyme guru - what ever that means - BUT and please listen closely - he told me that my daughter doesn't have lyme even though her tests came back positive...........he is so against lyme it's scary - what I think is going on is that why treat lyme when you can keep these kids on meds that are to help the JRA but not treat what is really going on with them...........I deal with this first hand and have been for over five years - my daughter is now being treated for chronic lyme that I have her through birth and now her " JRA " is doing very good - under control! You can try and deal with them but the one I deal with feels that he is much to smart than me - especially when it comes to lyme disease and it all in our head so to say - Good Luck - -just giving you the truth Diane ________________________________ From: Chiaravalloti <tscollo@...> Sent: Mon, January 4, 2010 5:30:37 PM Subject: Re: [ ] new member  Thanks so much. So do you think that a rheumatologist won't know enough? > > > From: Sara <srobinson@cosmicco w grrl.com> > Subject: Re: [ ] new member > @group s.com > Date: Sunday, January 3, 2010, 8:36 PM > > > > > > > : Welcome to our little corner of hell! Seriously, you're in for a longer, stranger trip than you probably realize right now. The good news is that there are a lot of people here who've walked that path, and I think most of us would say that we'd never have made it if it weren't for what we learned here. > > A few things you need to know right off... > > The bad news -- the worst of all -- is that your orthopedist and your rheumatologist will not, in all likelihood, know the first thing about curing your Lyme. They will give you a month of a single antibiotic, which almost certainly won't do the job (I can say this with some certainty because you have clear symptoms of both neurological and cardiac Lyme, which indicates that you've had it a good long while, and it's entrenched itself deeply in your system). You need to locate a Lyme-literate doctor, preferably one who is a member of ILADS, who will undertake the comprehensive treatment needed to really manage and shake off the disease. And because Lyme is a deeply political disease, these doctors typically don't take insurance, so this is going to run to some money. > > The good news is that your Lupus symptoms, cardiomyopathy, and POTS are all very probably directly caused by the Lyme, and will likely clear up when the Lyme is properly treated. (Personal experience speaking: I had cardiomyopathy, POTS, and different but similar autoimmune issues that all abated with treatment.) > > The " 3 out of 9 " was probably a reference to the bands on your Western Blot test. There are nine bands that indicate the presence of Lyme; you lit up on three of them. Some of these bands are more clearly indicative than others; obviously, at least one or two of the ones on your test were very strong indicators. > > You need information, and you need it now. Books to acquire include: > > Cure Unknown > 10 Best Lyme Disease Treatments > Everything You Need to Know about Living With Lyme Disease > > And a video: > Under Our Skin > > Websites to consult now: > <http://www.lisasimo ne.net/images/ pdfs/B_guideline s_12_17_08. pdf> > <http://www.ilads. org/> > <www.calda.org> > > Holler with any questions. We're here with an ear. > > Sara > > > > ------------ --------- --------- ------ > > Lyme Disease News continually updated from thousands of sources around the > net: http://www.topix. net/health/ lyme-disease > > MedWorm: The latest items on: Lyme Disease > http://tinyurl. com/23dgy8 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2010 Report Share Posted January 5, 2010 Diane, thats too bad. i did hear that there is a MD part of the unbelieving group, doing the same sort of thing, and I wonder if its the same doctor. I'm sorry that happened, thats horrible! i feel bad for your daughter too, as I'm 14 and have been told it was fibromayalgia by a very cruel, and mean, and senseless rhuematologist.... Elaina > > > From: Sara <srobinson@cosmicco w grrl.com> > Subject: Re: [ ] new member > @group s.com > Date: Sunday, January 3, 2010, 8:36 PM > > > > > > > : Welcome to our little corner of hell! Seriously, you're in for a longer, stranger trip than you probably realize right now. The good news is that there are a lot of people here who've walked that path, and I think most of us would say that we'd never have made it if it weren't for what we learned here. > > A few things you need to know right off... > > The bad news -- the worst of all -- is that your orthopedist and your rheumatologist will not, in all likelihood, know the first thing about curing your Lyme. They will give you a month of a single antibiotic, which almost certainly won't do the job (I can say this with some certainty because you have clear symptoms of both neurological and cardiac Lyme, which indicates that you've had it a good long while, and it's entrenched itself deeply in your system). You need to locate a Lyme-literate doctor, preferably one who is a member of ILADS, who will undertake the comprehensive treatment needed to really manage and shake off the disease. And because Lyme is a deeply political disease, these doctors typically don't take insurance, so this is going to run to some money. > > The good news is that your Lupus symptoms, cardiomyopathy, and POTS are all very probably directly caused by the Lyme, and will likely clear up when the Lyme is properly treated. (Personal experience speaking: I had cardiomyopathy, POTS, and different but similar autoimmune issues that all abated with treatment.) > > The " 3 out of 9 " was probably a reference to the bands on your Western Blot test. There are nine bands that indicate the presence of Lyme; you lit up on three of them. Some of these bands are more clearly indicative than others; obviously, at least one or two of the ones on your test were very strong indicators. > > You need information, and you need it now. Books to acquire include: > > Cure Unknown > 10 Best Lyme Disease Treatments > Everything You Need to Know about Living With Lyme Disease > > And a video: > Under Our Skin > > Websites to consult now: > <http://www.lisasimo ne.net/images/ pdfs/B_guideline s_12_17_08. pdf> > <http://www.ilads. org/> > <www.calda.org> > > Holler with any questions. We're here with an ear. > > Sara > > > > ------------ --------- --------- ------ > > Lyme Disease News continually updated from thousands of sources around the > net: http://www.topix. net/health/ lyme-disease > > MedWorm: The latest items on: Lyme Disease > http://tinyurl. com/23dgy8 > Quote Link to comment Share on other sites More sharing options...
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