posted
I'm slowly learning the history of my possible exposure to Lyme. I have recently started having minor/moderate neurological problems and the neurologist is testing for Lyme (I'm seeing a doctor at a university that has actually done research in Lyme Disease).
I go back and forth between whether I think I had Lyme as a child or not. I remember getting sick after a tick bite when I was 5 years old. The doctor thought I had a virus (this was over 20 years ago).
The thing is, I got well after 2 weeks without any treatment. After that I had no problems whatsoever until recently. I have always been extremely healthy, never had any pains. I did blow out my knee and have always had knee pain, but that was due to an actual injury.
The reason I think it could be Lyme was due to a blood test I had two years after the possible exposure to Lyme. I don't know exactly what was tested but the doctor found an abnormal level of something, he didn't know what it was though. He said it was like mono (something that stays in your system) but not. He was also a horrible doctor that we promptly stopped seeing.
I didn't live in an area with extremely high levels of Lyme (I'm from the West Coast). I don't doubt that I got something from that tick but I'd debating whether it's causing my neurological problems now.
I have a family history of neurological problems (which I know have nothing to do with Lyme, it's genetic and they've found the gene that causes it) so I'm thinking it's likely that this is what's going on. The thing is, I am the youngest person in my family to start having these symptoms. Everyone else was in their 50s when the problems started showing up.
I'm trying to decide how hard I should push this whole Lyme thing. I've done a Lyme Titer and the neurologist said he'd do a Western Blot after that if I think I had Lyme as a child.
I just don't know. I'm afraid if I push the Lyme testing to hard, there is the possibility that other issues might be ignored that are actually causing the problems.
I need some insight here. Given how well I recovered from the disease, is it more likely that it's something else?
Posts: 11 | From MO | Registered: Jul 2006
| IP: Logged |
Lyme Disease Symptoms List 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
PS...You could also have coinfections from the tick bite that could be causing some of your symtoms.
WELCOME!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
Children are much more resilient than adults. I don't think you can rely much on a possible childhood experience and extrapolate from that.
If this was me I wouldn't worry so much about when you could have been infected if you do have Lyme or another tickborne infection. The importnt thing is to have the right test done by the right lab.
I don't know which University you are seeing, but in my mind that is a red flag right there that you will probably not be adequately tested. It is a sad but true state of affairs that the Universities are some of the worst when it comes to diagnosis and treatment of tickborne illnesses.
And when you mention Lyme research that worries me even more -- research is all about the money and there are many agendas that put the patient last.
Based on hubby's experience, 13 out of 14 neurologists said his Parkinsonian tremors/myoclonus/seizure-like episodes were from anxiety/depression. The real cause is Lyme, Babesia and possibly Bartonella.
Lyme could possibly trigger some other underlying neurological condition. Hubby had a previous problem with heavy metal/mercury toxicity and I feel that that is why his main symptoms are neurological.
Hubby never had a rash and never knew about the tickbite. Probably at least half of the people infected did not see a tick or have a rash.
My advice is to post in the seeking a doctor forum and forget about Univeristy doctors. A LLMD (Lyme Literate Medical Doctor) is a specialist in tickborne diseases -- many of them only treat these diseases.
Good luck.
Bea Seibert
P.S. If you have some genetic predisposition for a specific disease then if this was me I would get myself tested rather than live a life of uncertainty.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
posted
Well, I'm extremely confident in my neurologist and the research this univeristy has done. You've got your experiences, I've got mine.
Sometimes neurological problems are just that, neurological problems. I have maybe 5 of the sympoms listed and all of those are much more likely to be caused by something else given the rate of Lyme infection in the region I grew up in.
I'm beginning to believe that this website is more than a little irresponsible. The odds are against me having Lyme, yet I feel that everytime I've posted here I have been told that I have Lyme disease and have even been told that I should stop breastfeeding my child on the off chance that I do have Lyme.
I feel horrible that all of you have the experiences that you've had. I know how frustrating it is to not be listened to by doctors and fearful of what the future holds, but there are countless other diseases out there that can cause similar symptoms. I'm also extremely stressed and sleep-deprived, which in my opinion is a more likely culpret than Lyme Disease.
Thank you for answering my questions but I don't feel the need to live in hysteria.
Posts: 11 | From MO | Registered: Jul 2006
| IP: Logged |
arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Hi,
I understand your desire to not just focus on Lyme when you're not convinced that's what is causing your problems. It is hard to feel warranted to go through extra testing and seeing other doctors when you feel it could be something else.
On the chance that it IS Lyme and you brush off that possibility, it seems that you should read what you can on it to figure out for yourself how likely it is that Lyme is causing (or contributing) to your current problems. Just as you don't want to focus on Lyme so much that you miss other possible diagnosis, I think you shouldn't discount Lyme if there's a chance that's what you have.
I read your other post about breastfeeding and, seeing that your son is a toddler and if you do have Lyme you've probably had it since long before he was born, I don't think it's warranted for you to wean him unless you're either more convinced that you have Lyme or your doctor (whether it's your current neurologist or an LLMD - Lyme literate MD) believes there's a good chance you have Lyme.
It's hard for those of us who have been going through hell with this disease to not feel that any chance of transferring Lyme should be avoided or that anyone suspecting they have Lyme should be evaluated by an LLMD. We don't want anyone to have to go through what we've been going through so forgive us if you feel we're going overboard (although I can't really speak for everyone).
For some good basic information about Lyme, here are a few websites:
posted
I'm not saying Lyme Disease is hysteria. I said jumping to the conclusion that I have Lyme Disease based on nothing is hysteria. Being told that I should give up breastfeeding my son is hysteria.
I mean this in the nicest way possible, but not everyone that has weird stuff going on has Lyme Disease. That said, I'm going to take precautions and do the labs (although not from Igenex due to research I've done) but I'm not going to drive across the state to a doctor that I don't know when I've got a doctor that take Lyme Disease seriously, but without jumping to conclusions.
Posts: 11 | From MO | Registered: Jul 2006
| IP: Logged |
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
hey there minion...
Why the heck are you here then/
Look,,, whoever told you not to breastfeed your child was way off base...
Cuz if you have lyme you already may have passed it on to your child in UTERO...
As I suspect my mother of doing that to me...
Do not worry about it though...nothing you can do about it now,,,
The lack of sleep and ensuing anxiety are signals that your circadean rythm is off...a lyme symptom... It has a tendancy to give you a ptsd like reaction...flee fight response... In this way...as with many chronic illnesses...even if it is not lyme...the cycle of illness and worrying about it feed on each other and perpetuate themselves...
Soooo go your own way if you like....
One of the interesting things about lyme is it likes to go after previously traumatized parts of the body...and brain...
And you do not have to have all the symptoms...
I know of a couple folks who only have like chronic fatigue... parkinsons like stuff... or fibro myalgia...
You may just be affected mentally...
It does not have to be both physical and mental...
mine lay dorment...with the exception of infantile parallysis at age four for six months...followed by life long migrains...stomach pains that were never diagnosed...and mild psychological anxieties and depression....
It just got worse when I got older and my immune system got weaker and then weakened even more by ducks...treating me for stuff I did not have...
Careful dear....we are only here to help....zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
| IP: Logged |
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Here's the thing, Minion - docs (ducks) often play the odds when deciding to test for Lyme Disease. Which, of course, is a self-perpetuating system of ``We are so sure we don't have Lyme around here, we don't even test for it!'' The truth being that if you don't test for it, you don't find it, so that must mean you don't HAVE it, right?
The odds are against me having Lyme, too - much more so than you - and that goes for the other 5 people I've located in my town of 9,500 that also have it. At least 3 of us are convinced we got it here. If you look at the 2003 CDC map, I have almost zero chance of getting Lyme here, and in every state where I have every lived.
Please don't rely on the ``odds''. Be smart and find out instead. And you are right, don't get hysterical about any of this. These are tough decisions that need to be thought through.
We just try to present the truth here as best we can.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
| IP: Logged |
posted
I fail to see anything being said as hysteria.
I had Lyme when I was a kid, got treated for it, but since I had it for so long all the treatment did was knock it into remission...for 16 years.
Over the past year my health started failing with seemingly unrelated problems. I was asking myself how one person could have so many problems and go from being a healthy 26 year old to a frantic and diseased individual in the span of 12 months (sinus infections, horrible and debilating upper respiratory infections, strange TMJ and tooth pains, gastric ulcer/chronic gastritis, fatigue).
I did some Lyme research about 7 months ago about Lyme, and found out it could come back and out of remission. I blew it off then, thinking people were nuts too, and just grasping at straws.
I finally gave in to the possibility of Lyme when I became sooo ill that I couldn't function normally day to day, my health was failing swiftly. I went to doctor after doctor. All tests coming back negative. I was told I was crazy, its all in your head, blah blah blah.
I came to this site, was convinced that I had to see an LLMD. I'm glad I did, because now I'm getting treated and am verrrrry slowly feeling stronger.
I got no rash as a child either, but like you had the 'flu' for quite a while, that was when it started for me.
Believe me, when I first came here and people were telling me about how much work I'd have to do and how I had to see a specific doctor..one not covered by insurance...I was also taken aback, but there is a reason Lyme is taken so seriously by its patients.
Posts: 594 | From NJ/NY | Registered: Jun 2006
| IP: Logged |
Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Hey Minion, nice to meet you. I am glad you have a good doc you trust in Missouri.
Any doc worth his/her salt will include Lyme disease in a differential diagnosis and will test you for any ailments for which you show signs and symptoms. I am sure you will get a good work-up to rule out some and rule in other probabilities.
The most encouraging thing I read was that your doctor was willing to have you take a western blot test. It is not infallible, but has a better record than the ELISA which is probably what you had.
I agree that sometimes people here seem to be over-sure that whatever is presented is Lyme disease for sure. This is the internet and you have to keep in mind that you will hear all sorts of opinions. Generally the people who post here have good intentions.
quote:Originally posted by Ann-OH: The most encouraging thing I read was that your doctor was willing to have you take a western blot test. It is not infallible, but has a better record than the ELISA which is probably what you had.
I'm concerned that they are going to use Quest or LabCorp and those are not so hot for lyme testing, to say the least!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
"The lack of sleep and ensuing anxiety are signals that your circadean rythm is off...a lyme symptom..."
No, my lack of sleep comes from having a toddler that is so addicted to nursing that he wants to nurse all night long (he's had a lot of teething lately).
I know for a fact that if someone were to take my child for 10 hours I could sleep straight through with no problems whatsoever.
I haven't slept longer than 5 hours in 18 months due to nursing, therefore I think it's highly likely that sleep deprivation could be causing my problems.
(I should add, my son has no symptoms of Lyme Disease so his lack of sleep cannot be attributed to the disease. It's very much part of his personality and extremely common at this age.)
I think you all misunderstand me. I don't think it's not possible that I have Lyme.
I came here because it is a possiblity and I want to be informed. That said, it's still extremely unlikely that I have Lyme. I know that Lyme is everywhere. I'm an intelligent person and have done my homework.
I just don't want to get so convinced that I have Lyme Disease that I focus so much on that and don't discuss other issues with the doctor, which I'm much more likely to have.
I know stress can do a number on your body, so can sleep deprivation. I've got a husband in Iraq and a toddler that makes me want to pull my hair out. Stress is a very good possibility.
I hope you didn't take my post as rude. I understand that you all are very passionate about Lyme Disease and I truly appreciate that.
I just felt like everytime I posted a question the responses were attempts to tell me I have Lyme Disease. I just don't think that's a good thing to do to a person.
I'm not living in denial in the least bit. I know what the possibilities are and in fact, I'm hopeful that it's Lyme Disease rather than the genetic illness that has left my uncle bed ridden and unable to talk.
In doing research about Lyme Disease, I've found that the topic is very controversial and it seems everyone has an agenda.
Personally, I don't think either side is reliable (and I'm not talking about you as individuals, I'm talking about doctors and researchers) and I don't think there are enough scientifically proven facts for me to pitch a tent in either camp. There's a lot of speculation. I'm just trying to make informed decisions.
Posts: 11 | From MO | Registered: Jul 2006
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by Minion26: I'm going to take precautions and do the labs (although not from Igenex due to research I've done)
Good morning, Minion!
I think it's a perfectly good idea to NOT jump to any conclusions until you have thoroughly checked out other possible diagnoses.
It sounds as if your neurologist is a cut above most, who rely solely on the so-called 'two-step' approach to lyme testing, meaning a positive ELISA is required before you get a western blot. Glad to hear yours isn't in that camp.
I do have a concern about your western blot testing, however. It's really very crucial.
You say you will not test with IGeneX due to "research" you've done. IGeneX has met and exceeded every possible standard of rigorous testing imaginable. And believe me, they've been put through the grind. They are the positively best lab in the world for tickborne diseases. They are approved by the US Government and Medicare, fer cryin out loud. :-) They do NOT hand out positive results to everyone. Quite the contrary!
Other labs are not going to do a thorough job, period. One major reason? They are going to completely OMIT reporting on some of the most important bands on your western blot. They are actually FORBIDDEN to report on them. You might be triple positive on those bands -- bands so specific to borrelia burgdorferi that they were used to make the failed vaccine from!!!! -- but you will never find out, because those labs are forbidden to tell you. You'll get a nice 'negative' report back, though you could be teeming with lyme disease bacteria.
But IGeneX is not bound by these rules like Quest and the other labs, and will tell you the results of every single band on your western blot.
If you're going to get a western blot, get a real one. A western blot from anywhere else is a crap shoot. I've been on this board long enough to know there are PLENTY of people with negative blots from IGeneX, so believe me, if you're negative, they'll be more than happy to tell you!
I'm wishing you the very best!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
posted
I'm not going to get into my views on Igenex but I think I've established a game plan.
1) Wait for results on Lyme Titer (expecting them to be negative)
2) Get a Western Blot by the lab my doctor recommends (I know you aren't going to agree with me but I have my reasons).
3) If Western Blot comes back negative, persue other causes of neurological problems.
4) No matter what the diagnosis (something or nothing) I will then get a test from Igenex and go from there.
I've done a ton of research from both camps and to me, this plan incorporates both sides very well.
Posts: 11 | From MO | Registered: Jul 2006
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hiya, Minion!
Here's an interesting little article, with some good references, on how horribly awry western blot testing can go at other labs. And this is from conservative journals.
My ELISA was negative, and I had an initial diagnosis by my neuro of MS (multiple brain lesions, 24/7 migraines, cognitive sludge, zilch for memory, bilateral arm pain). However, I had a shriekin' CDC positive IGeneX blot. Many here are the same. The ELISA is one dead dud -- oughta be tossed, in my less-than-humble opinion.
I'm glad an IGeneX is in your plan at least at some point. Some of our members here have had a positive test through Quest, et al. and been lucky, but as you can see from the article, 'taint real frequent.
Do keep us posted on yer journey!!
Michelle
____________________
What About the Western Blot? Is That Definitive?
The Western Blot is merely another antibody test. Our experience in measuring immune system markers is that the immune system is weakened in many with Lyme. So depending on immune system anti-Lyme antibodies is wishful. However, the Western Blot is more specific than the ELISA. The test can test for 25 possible "bands" that relate to parts of Lyme or other infections.
But the routine Western Blot typically done has massive errors. In one serious test of the Lyme Western Blot testers, there was a stunning finding. They used nine clearly infected patients and sent their blood to 18 labs. Of the IgG type of antibody, some labs were wrong. They missed 10 of 18 samples. For the IgM type of antibody, the labs were occasionally so bad they falsely reported Lyme as absent in 16 of 18 samples (Arch Intern Med 150:761-763, 1990).
1. Most physicians are taught to do the ELISA first. If that is positive then "confirm" with the Western Blot. The big confusion is that this is not a way to diagnose. It is the CDC's way of generally tracking the movement of Lyme in locations and states. It is not a way to determine whether you, your child, your relative or close friend, individually, have Lyme! It is not the best way to test our precious loved ones.
If you use the Elisa first method with the confirmation Western Blot you miss massive numbers of individuals with Lyme (Journal of Clinical Microbiology 34: 10-9, 1996).
From this two-stage approach, you may have a sense that Lyme is entering your state at an increased rate, but that does not address your individual concern.
2. The CDC guidelines seem to express clearly to me that these two lab tests were never intended to be the final measure of whether you have Lyme. They report the main diagnostic criteria are what you report to your doctor and what they find on a physical, i.e., "clinical findings." (www.cdc.gov/ncidod/dvbid/lyme/diagnosis.htm)
3. Another government agency, the conservative FDA, has issued a bulletin explaining that a person may have active Lyme disease and yet may have a negative lab result. Meaning, diagnosis should be based on the history of what happened to you, symptoms, exposure to the tick and physical findings (www.fda.gov/medbull/summer99/lyme.html).
4. Congress and the President have felt that negative labs have been used to keep people from needed treatment. United States Congress Public Law 107-116 explains that labs that are negative have no relation to Lyme diagnosis in a person and refers to the CDC that lab monitoring and testing with Elisa and Western Blot was "developed for national reporting of Lyme disease: it is not appropriate for clinical diagnosis."
Some bands may be fairly specific to Lyme: 12, 22, 23/25, 31, 34, 35, 37, 39, 83, 93. Dr. Charles Jones, who is the leading pediatric Lyme expert in the USA, with over 6,000 treated child Lyme patients, explained to me if a Western Blot done by IgeneX -- the best Tick illness lab in the USA -- comes up positive with only one band, it is a specific positive. It means that "bands" or antibodies specific to Lyme are present.
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
quote:Originally posted by Michelle M: Other labs are not going to do a thorough job, period. One major reason? They are going to completely OMIT reporting on some of the most important bands on your western blot. They are actually FORBIDDEN to report on them. You might be triple positive on those bands -- bands so specific to borrelia burgdorferi that they were used to make the failed vaccine from!!!! -- but you will never find out, because those labs are forbidden to tell you. You'll get a nice 'negative' report back, though you could be teeming with lyme disease bacteria. ========================================== If you're going to get a western blot, get a real one. A western blot from anywhere else is a crap shoot. I've been on this board long enough to know there are PLENTY of people with negative blots from IGeneX, so believe me, if you're negative, they'll be more than happy to tell you!
Absolutely correct!
PS... My western blot was negative from Igenex.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
keep in mind if you've had Lyme since you were a child your body may not make the antibodies necessary to give you what is considered a positive test result...its been a long time.
My LLMD said my test was a hair below what traditional medicine would consider positive, but based on my symptoms he made a diagnosis.
Lab tests are just that...tests...they aren't infallible(able?) unfortunately.
Posts: 594 | From NJ/NY | Registered: Jun 2006
| IP: Logged |
quote:Originally posted by elley0531: keep in mind if you've had Lyme since you were a child your body may not make the antibodies necessary to give you what is considered a positive test result...its been a long time.
That is what happened to me and why my test was not CDC positive. That and the fact that my former rheumatologist gave me steroids and methotrexate...further suppressing my already weak immune system.
I like your plan, Minion. Especially number 4.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Hey there minion... why the nickname...minion of what? My understanding of minion is someone who walks on the darker side...witches and stuff...
Now I may come off sometimes as a little harsh to some folk around here...probably cuz I am not all touchy feely gooshey girley...
but then again I don't have a lot of patience with no it all, swell headed folks.
Yeah, I personally thought you were QUITE rude... You come to a lyme disease website and expect what?
That we would talk about your possible genetic neurological disorders...which you fail to embelish any info...cuz neurologic disorders could be linked to in utero lyme neuroboreliosis passed on to you from your mother...
You tell us you have five symptoms...but don't tell us what they are...
You tell us you have a great doctor and university lab that researches lyme disease...but don't tell us which one that might be...
Furthermore you say you're stressed out and sleep deprived...which I admit can and does cause some of the aforementioned symptoms that you did not mention. Then later tell us your sleep deprivation is due to your feeding schedule.
You accuse us of being hysterical...you're mistaking that for overprotective and over concerned from having gone thru hell with this disease and we don't want anyone else to have to go thru the same crap...if we can help it!
Here's something you may not have thought about... Your hubby is in the military...are you aware that gulf war syndrome was treated by the army with doxycicline and is suspected of being lyme disease either contracted as a genetically engineered bioweapon.... Or as simple as GI's getting infected durring basic training on maneuvers...maybe even brining the little ticks home to their families on their bodies or clothes...or in their sperm???
I Know you SAY you're an intelligent individual...
But you know what...there's a lot of them here too...
We've probably FORGOTTEN more than any duck...neurologist, infectious disease, internal medicine, psychiatrist or general practitioner even can begin to know about our disease......
But if you think we're blowin smoke up your derrier...
Kindly do whatever your little heart desires...
If you're smart enough to realize I was offended by some of your comments...good for you...there's SOME hope for ya...cuz I was...
Other folk around here are too nice to tell ya where to get off....not me!
Believe me not a one here would rather you had some other ailment than what we have...and we would trade places with you in a heartbeat...
Cuz gee...you might have something mainstream medicine is willing and able to recognize and treat...
That's the only REAL controversy you'll find around here...
US having it and they(the money) not willing to treat IT! zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
| IP: Logged |
"You accuse us of being hysterical...you're mistaking that for overprotective and over concerned from having gone thru hell with this disease and we don't want anyone else to have to go thru the same crap...if we can help it!"
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
Thank you Tony for saying everything that I wanted to say but due to my bad lyme flare up I could not find the words.
I am glad you did.
I can only say this, I am to the point that I pray at times for it to be something besides Lyme. This is hell, it is no life.
Posts: 191 | From Eastern Shore. Maryland USA | Registered: Jun 2003
| IP: Logged |
posted
Before you get all bent out of shape that I said I hoped I had Lyme rather than the genetic illness that runs in my family, you have to understand what I'm talking about here. With Lyme I at least stand a chance. There is something that I can do. Maybe it will work, maybe it won't, but at least there's hope.
The disease that inflicts my family is a disease that has no possible treatment. It's extremely rare, and extremely debilitating, much more so than Lyme. There are diseases that are worse than Lyme.
This is why I made the statement I made. If it offends you, I'm sorry but if I had to choose between the two, I'd choose Lyme. This is not an attempt to say that those with Lyme don't suffer horribly! I in no way was belittling what you all go through.
I can see I can't win here so I'll go along my merry way and find information elsewhere.
Posts: 11 | From MO | Registered: Jul 2006
| IP: Logged |
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
I see you FAILED in addressing my questions...
MORE imperical evidence that you're some kind of troll...
This is NOT a GAME we're all playing here...where someone wins or loses...
It's a place to exchange ideas and you're obviously unwilling to play by these rules...
More trollish behavior...IMO....sooooo
What a MAROON!
GOODBYE.....
See ya....would'nt want to be ya....
Don't let the door hit ya....zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
| IP: Logged |
posted
Minion, first off, I'm sorry you need to be here and are worried about Lyme disease. Maybe we can help you get to the bottom of this?
Can you tell us what your family disease is called?
Lyme can and does cause neurological problems. Lyme can mimic many other diseases.
Tests are NOT reliable for lyme disease....ask others here how many are positive for it and you won't find many.
Most doctors will NOT treat for lyme disease even in the face of positive tests that they pass off as not positive. Unfortunately, finding a doctor literate in lyme disease is not as easy as going to a neurologist. There are only handfuls of capable doctors for treating lyme in this country.
If you were sick after a tick bite when you were young, there is a better than average chance that you have lyme and that the lyme is reoccuring.
It does not matter where you live as to your chances of getting lyme.....you were bitten in the West--I live in the West and I was bitten here, I have lyme.
Blood tests can be abnormal with lyme.
We can help with determining what those family disease symptoms are in relation to lyme disease if you let us....if you talk to us about it.
Help us to help YOU--Please!
--
[ 23. July 2006, 04:47 PM: Message edited by: meg ]
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Mini..
Welcome to LYMEnet!
Good to see you are trying to check out all possibilities concerning your poor and/or failing health. That is especially comforting to know since you have a baby who will depend on you making the best decission possible for your future and theirs.
Also sorry to hear about your relatives with the rare disabling disorders. Please know researchers and scientists on BOTH sides of the fence are now able to... and are doing some genetic testing on chronically ill Lyme patients.
They are finding that even though Lyme is the culprit.. folks with Lyme are falling into several genetic "groups" that dictate what types of symptoms they may have... how they will present, how they will deterioate, etc.
So if folks are tested for Lyme with inadequate tests.. and also tested for a genetic profile.. they WILL miss Lyme as the cause of the "rare" disease that they are told has no known cause, no known cure.. and they will not treat it properly.
And... they will NEVER find out the source of their problem is because Lyme was wrongly ruled out already, due to inadequate tests.
Example-
MANY many MS folks are learning they have Lyme disease and coinfections, NOT MS. They were originally told they had MS.. and many of those poor folks feel the unfortunate need to stick with that diagnosis because they feel a fool if they have been wrong for so many years. The ones who dare be brave enough to try and find the cause of their MS symptoms are often finding they have Lyme and coinfections.. NOT MS.
Since Lyme spirochetes can infect any and every organ, body fluid and tissue.. there can be many "sets of symptoms" which are subsequently given made up names (sometimes even after the doctors who first "descibe" the syndromes - no ego there, eh).. which ALL have one thing in common. There is no known cause or cure.
Things that are often misdiagnosed... that can actually be Lyme include.... but are not limited to:
The good news is- Those who took the lessons we've learned to heart and were properly evaluated by EXPERIENCED doctors were later treated with extended antibiotic therapy... and improved! To me that seems MUCH better than going down the wrong road.. living in misery.. and shortening one's lifespan.
In other words.. since the Lyme DNA has just recently been mapped out and available.. the latest reseach is currently expanding our knowledge... and we know many of us have certain genetic factors that contribute to our specific Lyme symptoms.. which in turn... may make it LOOK genetic.. or like a "rare" disorder.. but it isn't.
````````````````````````````````````````````````` You said.. "In doing research about Lyme Disease, I've found that the topic is very controversial and it seems everyone has an agenda."
Yes.. you are right.. it is controversial.. HORRIBLY so. People should NOT be stuck in the middle of such a nightmare.. especially such sick people.
You might want to consider the various agenda's of the various sides when considering what to do and what road to follow.
University doctors- School loans to pay off... high dollar living costs.. reputations to protect.. grants to apply for to pay for their research at universities and to keep their positions ... families to support with THAT income... reputations.. protectioin from malrpractice suits for wrong diagnosis, etc.
Most of the hard core ducks have other financial ties to the Lyme world.. lab interests, Lyme related patents, insurance industry ties, etc. Don't believe me.. do check into it for yourself. (Just PLEASE don't take too long.. I worry about the baby.)
Most of the university researchers and doctors are NOT experienced with treating chronic Lyme disease.. most don't have it.. and most don't even treat patients with it because their guidelines (IDSA) don't acknowledge that it even exists!
Most are in fear of losing their positions if they don't "tow the line" and keep on the same course.. so other doctors who have totally screwed up so many people won't look bad and be proven wrong.
I heard last month.. two months ago actually... that a doctor in a law suit concerning Lyme disease .. during a hospital staff meeting.. told other doctors in attendence that if they were found to be following OUR guidelines (ILADS) for diagnosis and treating of patients.. you know, the guidelines that WORK .. that they would, "be in trouble".
Ok.. consider the above.. then this...
Lyme Net patients- Volunteers who HAVE the disease and have seen ALL angles... and who have YEARS of experience in having to find help for themselves (been through the good and bad)... who don't have to worry about income gains or losses from being here sharing information and trying to save lives.. have no rewards or perks to gain .... and who's ONLY goal is to help others from going down this horrible, controversial road.
Example... I could walk away today... and let the destruction of hundreds of thousands of lives continue.. but I don't want YOU.. especially as a fellow military wife alone with a baby.. which I have been through (bless your heart)... to have to end up totally disabled or dead because you had the same WRONG information we had.
Please do continue to research and learn about Lyme. But do yourself and your precious little one a favor. Focus on the words .. CHRONIC Lyme.
The universities stop at the word Lyme.. which is the majority of their problem.
Bottom line..
If Camp "A was right, there wouldn't be a Camp "B".
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Oh Thank God... Tin
for saying so articuately what so many of us struggle to say.
Thank You
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Hey Daveapen....
Is that the best you can do?
Hey TUTU...maybe you're right...time will tell...I just got a burr under my saddle is all...
I don't like folks comming here for help and being soooo secretive, and RUDE.
Inferring that we're all nut jobs who are convinced EVERYONE HAS LYME DISEASE....aaaYYYIIIII...when we don't.
I'm here like a lot of you every day and I sure don't see a lot of what minion or tabers refers to in their acusatory posts...
OVERGENERALIZATIONS...is what I'm referring to.
And Hey...if ya think our advice stinks...then go away...that's all.........zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
| IP: Logged |
posted
Lymietonyz, Are you herxing? minion just doesn't understand what you have been through. Be nice. She may still need even your help. Didn't you also believe in your doctors in the beginning, before you learned the truth? Years ago I wouldn't have believed any of you here. Don't we all at some point believe that our doctor knows best? Maybe once Minion understands what a herx is she will forgive you for being mean.........
Tincup did an excellent job of explaining things to you Minion. Keep your mind and options open.
tincup is right to worry about your baby as I do as well. My son did not show typical lyme symptoms either as a baby, except for the colic which was blamed on the formula..... We didn't find out he had lyme until he was 9 years old. Even then his symptoms could be explained away. I had him tested because I thankfully came in contact with an entire family that included three children that do have lyme. Even though my own son seemed healthy, was very athletic and recd good grades I knew in my heart that something wasn't right. I had been told he was inattentive ADD but not all the time. Only some days. What? How could that be. He then tested positve for lyme and I began to see the picture on the puzzle. We now belive that my son was more then likely born with lyme. I had Bells Palsey when I was 9 months pregnant but no one thought to check for the lyme. The symptoms can be so subtle that you may not know there is anything wrong at all. Again, keep an open mind and NO I DON'T BELIEVE YOU ARE A TROLL.
Posts: 547 | From Maryland | Registered: Mar 2005
| IP: Logged |
TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
What you have may very well not be lyme disease. The only thing I can say is if you believe , for the slightest inkling, that some or all of your symptoms may be coming
from the tick bite when you were five- get a LLMD, get tested and at least try some treatment.
Thats my only advice.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
| IP: Logged |
posted
Lymie tony z, relax man. Based on your recent posts, calling you a nutjob wouldn't be too far-fetched.
Do you get worked up this much all the time?
Posts: 27 | From CA | Registered: May 2006
| IP: Logged |
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
OK OK OK...
Perhaps I've been a little strong...
I've been dealing with ducks for the past month a lot...
That never makes me feel too good.
Perhaps cuz my recent DX of typeII diabetes and trying to get that under control has made me a little hyper.
I have had some of you applaud my remarks and some of you think I'm WAY off base...
And a recent plea for me to STOP...
OK fine....you guys handle it.....zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Given how well I recovered from the disease, is it more likely that it's something else?
![[Cool]](cool.gif)
![[tsk]](graemlins/tsk.gif)
![[Razz]](tongue.gif)
![[Big Grin]](biggrin.gif)
![[kiss]](graemlins/kissing.gif)
Printer-friendly view of this topic