I am so sorry to hear of your struggles, but welcome to the world of Lyme.
Pretty much all of us have been through the mill with this disease, bouncing from one doctor to another, and one test to another. The way you are being treated is appalling, but unfortunately does not surprise me. I have had similar issues in the past, and I know how terribly frustrating it can be.
It's fantastic that you have the appointment with the LLMD lined up. Time is of the essence, and the sooner you see the LLMD the better, please don't keep wasting your time and money elsewhere. You will not get the help that your wife desperately needs.
Please do let us know how things are going
Last edited by littlehutton; 01-05-2011 at 03:18 PM.
So sorry to hear. Unfortunately, this tends to be "par for the course".
As has been said previously, I wouldn't even fool around with Mayo Clinic. They are premier generally, but Igenex is the only place you're going to get accurate Lyme information. Then again, tests for Lyme are not reliable, even at Igenex. I understand everyone wants a test to prove that they have (or don't have) Lyme, but Lyme just doesn't fall into that category.
You said you had found an LLMD. Hopefully by now they have contacted you. If so, they can (and probably will) send her blood to Igenex while they are evaluating her symptoms.
Maybe it's really all for the best that there was a "mix up" with sending to Mayo (since they are not considered a Lyme resource). Just my take.
I hope for you a lessening of frustration from here on. Let us know how it goes.
I saw two neurologists when trying to identify what I had. They were worthless quacks who made my headaches worse with Topamax and accelerated the spread of Lyme with 3 rounds of steroids. I asked them straight up to start running tests but they insisted to give the Topamax time to work. Both hacks also made sure I plenty of Effexor for depression although it eventually helped with anxiety after the Lyme diagnosis. I think these two neuros had stock in Pfizer or something. Sorry for the rant but I still have issues with the docs who made the last year of life unnecessarily difficult.
just thought i'd share that today we got our mayo results back, and they were negative.. so the local lab, and mayo now have been negative..Rod
I cannot stress strongly enough the importance, when it comes to Lyme, of not relying on tests. I happen to test positive but I would say that the majority of lymies don't.
I'm happy to hear that your wife's symptoms have abated but that is not unusual for Lyme, especially if she has been receiving any abx therapy (I can't remember what you said about this). Lyme can look (and feel) like it goes into remission - for days, months, even years - only to reappear again, often following stress, something eaten, alcohol consumption, a cold or other illness, or just "out of the blue".
Continuing to wish you and your wife all the best, especially to find a sense of resolution and direction as I know how very frustrating it can be to not have that clarity.
I have to totally agree with Jen, testing is so unreliable, I have had three negative test results, but was lucky enough to eventually get a positive through iginex, I was also wondering if you wife has been tested for any co-infections, which is as equally as important.
I would definately recommend that you see an LLMD asap for further evaluation, as Jen said Lyme symptoms can calm down only to return later, this has happened to me twice in the past, and I am now suffering with chronic Lyme, which is much harder to treat.
I hope you find some resolution soon,
All the best
The Following User Says Thank You to littlehutton For This Useful Post: Rod72 (01-23-2011)
I'm not sure what exact test they did, all the lady from the office could tell me is that it is a lyme serology, or something to that sort, and that it is negative, with a number result of .24
what that means, i have no idea, and the lady from the Dr. office has no clue.., i know she means well, but.., well you know.. no real explanation, just makes my blood boil for the next hour..
i asked her to send me a copy of the results, maybe there is more information there once we get it..?
Even though it may be questionable, we're looking forward to seeing the neurologist just to see what he may have to share, and that box is checked.. then soon after we're off to see the LLMD.
it looks like it is going to be a matter of deductive reasoning, further collection of opinions from doctors, and hopefully good discussions with people here..., and from what i can tell, a lot of patience..?
Thanks again to all, you've been Fabulous!
The following user gives a hug of support to Rod72: jenj770 (01-14-2011)
I was diagnosed with Chronic Neurotoxin Disease a couple of years ago and I also had very high levels of Chronic Epstein Barr in my system. After much searching for a doctor who knew what was wrong with me, I finally found one and she recommended that I read the book "Desperation Medicine" by Dr. Ritchie Shoemaker. It seems that he stumbled on a connection between chronic neurotoxin disease and lyme disease and developed a drug therapy for treatment. I didn't have lyme but I was exposed to toxins when I was about seven years old. I have had many problems my entire life and when I read his book, it all started making sense to me. I was put on the drug therapy and was so much better within a few days. Please know that there is hope but you must never just give up. I have seen many, many doctors who couldn't diagnose me with anything and started trying to make me believe that I was imagining my symptoms and that maybe I was just a little crazy. Reading this book just connected all the dots.
It seems that when you are biten by a tick, most doctors treat you for just one type of toxin that is emitted but Dr. Shoemaker believes that you are actually injected with two toxins by the tick and are not treated by most doctors for the second toxin.
It has been found that people who were born with a defective chromosome are more susceptible to toxins in their surroundings. I was called a canary by my doctor because what happened to me will eventually effect everyone because of all the toxins we have put in the environment.
It is important to know that treatment is available for people with a toxin issue as well as CEBV but you must be very proactive in finding a doctor who understands what these illnesses are and how to treat them.
Please know that I wish you and your wife well and that there is hope...never, never give up and you will overcome the illness....
Last edited by hb-mod; 01-17-2011 at 09:39 AM.
Reason: Removed Quote from previous post. Please use "Quick" Reply rather than "Quote" Reply. Thanks!
The Following User Says Thank You to MotherofPiper For This Useful Post: Rod72 (01-23-2011)
We haven't tested for coinfections, just the two negative lyme tests so far. this week should be informative, as we see both the neurologist, and LLMD.
Its frustrating as can be, we found a family friend who's an Doctor, and he inquired that an entire endocrine workup be done, hormones, thyroid, potentially even doing a spinal tap to see what may be in the fluid..
something we found with my wife to have about 7 years ago was small pituitary adenomas, and she's had occasional MRIs to maintain that nothing has been changing.. her latest MRI shows no change..
Has anyone else ever found that there may be some link between the pituitary glans and Lyme Disease?
Recently my wife has been having anxiety attacks in the evenings, with short bursts of shakes with her hands and legs.. took about an hour for her to calm down after also taking a xanax.
We're really besides ourselves, i hope that we get some direction or at least a ray of light in what might be going on.. Its tearing me up to see her suffer like this.
Lyme is going to constantly make you think there is something terribly wrong with your heart, your lungs, your brain, your colon, your kidney; every system of the body can be affected. Many of us have gone from specialist to specialist trying to determine what is wrong only to find that they come up with nothing. This is because all these symptoms are due to Lyme Disease and can only be addressed using methods to kill the spirochetes and detox. Once you start treating the lyme, these symptoms should slowly start to abate.
I know this must sound like a broken-record, but it's only because so many of us have been through exactly what your wife is experiencing that we know the futility of seeking other specialists and going through their tests. I'll just speak for myself now because I know that you must do whatever you think best, but it was a waste of energy (which I had little of), sometimes money, but most importantly precious time to go down that path because every day spent chasing answers from misinformed doctors the spirochetes are gaining in strength. Did you know they replicate every 4 weeks or so?
I truly wish you the clarity you seek. I just don't think it's going to be found in the general medical community. I think you said you have an LLMD appointment sometime soon. Hopefully, that will help to alleviate some of your wife's current symptoms. I've been there - with the neuro lyme, the brain cysts, parotid gland tumors, lyme rage, kidney problems, lung edema, joint disorders, the list is endless. It's a devastating illness, but there is hope. Then again, how lucky is your wife to have such a caring husband!
You might want to read a book called "Desperation Medicine" by Dr. Ritchie Shoemaker...He talks a lot about Lyme Disease and the treatment of it by many physicians. It seems that ticks emit a toxin that goes untreated most of the time and causes all kinds of other problems on an ongoing basis.
I was diagnosed with Chronic Neurotoxin Disease about two years ago which it has been found I have had for more than fifty years. I never had Lyme disease but I am on the drug therapy that was developed by Dr. Shoemaker and I can tell you that I was so much better shortly after starting it. I have had bouts of shaking as well as really bad equilibrium problems. I got so bad that I could not finish a sentence that I started and could not remember names of people that I had known for a very long time. The staggering and falling down were the worst as well as the general feeling that I had the flu all the time. My body hurt everywhere including my skin being tender to the touch. I am sure that my co-workers thought I had a drinking problem because I couldn't walk a straight line.
Lyme Disease is a type of chronic neurotoxin disease and should be treated as such. Neurotoxins attack the nerves but if they can begin to be eliminated, the symptoms will subside and I have been told by my doctor that unlike other parts of the body, nerves can repair themselves over time.
Please know that there is hope...you just have to be very proactive in your search for answers. Finding a doctor who knows something about neurotoxins and how to treat them is most important.