Agree. If all the screening tests for Lyme are negative...then your achiness/headaches/exhaustion and whatever else are caused by something else.

The issue IS the testing. Standard Lyme disease testing is only 65% accurate; this standard of testing would not be accepted for any other ailment. Imagine a doctor giving you a diagnosis of cancer, for example, based on a test that's 65% accurate. And just for the record, I have never experienced chronic lyme disease myself, or any of the other "complainer" diseases.

I can be reached for comment and I believe I have Lyme disease that periodically flares. I've read the opinion on both side of the debate and the opposition offers nothing to account for my recurring symptoms.

The latest, and worst, is an extremely painful cyst in my knee. These cysts have been proven to be caused by and harbor Lyme spirochetes. Despite 5 month living with constant pain and a reduction in mobility that prevents me from working--my job requires agility at the very least--I cannot find a doctor to treat the cyst.

Kris you're giving the ELISA test too much accuracy. According to the American College of Pathologists, it is accurate merely 45% of the time.

I recently tested double positive for lyme on the standard Elisa and Western Blot tests and the CD 57 and have been chronically ill for over 15 years. What I have found is that doctors are now agreeing that fibromyalgia and chronic fatigue are multiple infection syndrome and in addition to a person possibly having lyme bacteria they most often have an overload of several coexisting infections such as Epstein Barr and others. As far as this not being real, I can assure you I would do ANYTHING to get better and ride my horses and be active with my kids again!

As for testing, it is true that adrenal and thyroid issues accompany multiple infection syndrome and are testable, but another good test is the tilt table test. Many doctors are finding their fibromyalgia patients will have quite a significant drop in blood pressure upon rising. (Mine drops 20 pts. currently.) Furthermore, one can also easily examine blood under a dark field microscope and see the lyme spirochetes.

Lastly, multiple infection syndrome including lyme disease also can cause mitochondrial (the batteries of the cells) failure issues which can account for the inability to have quality energy and the need to physically recharge after any exertion.

For those who are ill, DO NOT GIVE UP and do not let anyone tell you that this is in your head (as some of my doctors did initially)! It sucks that our medical system is so political and money oriented and not focused on quality whole person care. Nevertheless, there truly are millions of people suffering from an overload of infections (and toxins) who can recover as long as they receive the right care and support! One might also want to google Transfer Factors (the good stuff from egg yolk, colostrom, and immune supporting nutrients) as well as they have been showing significant results for years in helping chronically ill people recover their energy and function. I WISH GOOD HEALTH TO YOU ALL! Life is too short to suffer through it!

You have obviously never experienced chronic fatigue. How can you say that it doesn't exist if you have never experienced it?

Has he been to a rheumatologist yet? I was sick for 12 years til I got a diagnosis of psoriatic arthritis.

It is my understanding that Lyme disease can cause arthritic changes.

Although it is moving pain, without any deformation.

Independent Thought, that doesn't rule out some of the more than 100 different types of arthritis.

I have three types, and each of them affect just about every part of my body. But they don't affect every part of my body all the time. Some days, and for that matter, some hours, one joint, one body part, may be causing me a lot of pain. Sometimes it's another joint or another part. Sometimes it's all over, and sometimes everything is a bit sore but nothing is painful.

This is what happens when you have even one type of arthritis. Yes, that includes having "only" osteoarthritis, but in more than one joint. And if even one of your types of arthritis is inflammatory, then it can take anywhere from weeks (aggressive rheumatoid arthritis) to years, even at times, decades (ie, psoriatic arthritis), for the damage to show up on x-rays.

Been there, done that, and I'd like to throw out the #$)(#*$ T-shirt.

The Road Back Foundation - http://www.roadback.org/

Thousands of patients have reported successfully using antibiotics for conditions including rheumatoid arthritis, scleroderma, juvenile rheumatoid arthritis, lupus, dermatomyositis, ankylosing spondylitis, Lyme disease, Reiter's syndrome, mixed connective tissue disease, fibromyalgia and psoriatic arthritis. Results of an international survey of patients documented dramatic results including relief of pain, the lessening of swollen joints and an overall successful return of quality of life.

To be replaced, Kyle by extreme candida infections that have the same set of symptoms as does "chronic" Lyme disease.

I'm no fan of the pharmaceutical industry, but some antibiotics really help.

What works best for me is Colloidal Silver. No side effects, kills candida infections, and works better in general than any antibiotic for me for "chronic" Lyme Disease and "CFS".

I was on a powerful IV antibiotic called Rocephin, and I hate to say it, but I think a good Colloidal Silver is more effective.

But that being said, there are pharmaceuticals to treat and prevent yeast infections. Diflucan and Nystatin to name a couple.

So what's the proper solution? Inject steroids for the rest of their life for all these "auto-immune" diseases? Sure your body may have developed antibodies against your own cells, but how does that prove there isn't an underlying infectious agent at the root cause?

There's a lot we don't know, and more that we don't want to acknowledge.

So instead of using antibiotics for a potential disease remission, we should compromise our immune system with steroids?

I guess we can't win either way, can we?

Remicade has been my saving grace, but I am one of the lucky ones who have insurance. It bothers me to know there are people who have that kind of pain and can't get this medicine.

TRUE! Bless you Lexiwords2. It is a tough situation, especially depending on the infection load.

Those who claim to have chronic Lyme diseae have doctors who are too lazy to find the real reason for their symptoms.

If you really want to feel well again, CHANGE DOCTORS!

I did.

I found a doctor who doesn't believe he is God and actually listens to his patients. The only thing that accounts for my constellation of symptoms is Lyme disease. I'm on my third course of antibiotics in 5 months and, aside from my knee, I'm starting to feel improvement.

The lazy docs are the ones who won't listen to their patients and want an easy, tidy quick fix.

jkatzw, Lyme disease is NOT the only illness that accounts for those symptoms. That's my point. The list of all of the possible symptoms of "chronic" Lyme disease mirrors the lists of some other problems, including some of the less-well known types of arthritis.

The lazy doctors are the ones who listen to their patients and don't want to understand that the patient has self-diagnosed by searching the internet for a name of something that seems to fit their symptoms. I'm not saying that you necessarily did that, but did you have in mind that you had a particular problem when you first saw that doctor? Even that can influence the diagnosis of a lazy doctor because it influences what you say to that doctor. t points that doctor in the direction of your untrained opinion.

EXACTLY!!!!!

And a rheumatologist said what?

There is such a thing as infective arthritis, and there is such as thing as reactive arthritis. Both, if not properly treated, will continue to cause pain.

So again, what did his rheumatologist have to say??

Pseudothink, these are the results that you get when you have an open mind about something as controversial as "chronic" Lyme disease. Good for you.

The tests for Lyme disease don't test for the presence of the bug but for the presence of the antibodies that a person who has been exposed to the bug has developed. That's all that they can do. They can't even tell if those antibodies developed in the last week or more than decade ago.

Here's an example of the equivalent to that test. Rubella is known as a "childhood disease" but if you happen to contract it while you're pregnant, it can do serious harm to the fetus. But, there is a vaccine against it. Your doctor can tell if you need this vaccine by running a blood test that checks for antibodies to rubella. Those antibodies can have developed at any time in the past. But you don't show the antibodies, and you're a woman of child-bearing age, the vaccine is advisable. It's the same concept, and it measures only for the presence of an antibody. It can't tell you how long that antibody has been present.

I don't see a reference in your post to a rheumatologist. So, arrange to see one, because there are types of arthritis that can explain your lingering symptoms. And if you have seen one, get a second opinion. It's your right.

Thanks rpearlston! I've heard the suggestion to see a rheumatologist before, but given that I've run out of things to investigate for the moment, I'm more interested now. I'm just worried that I'd show up for the appointment, explain my symptoms (fatigue, cognitive difficulty, headache, tinnitus), and the doctor would just ask me why I thought he could help me with them. I don't have an answer for that, nor any clue about what tests he might do that would help. I don't have significant joint pain or joint-related problems that I'm aware of, but I suspect there is more to rheumatology than that? Perhaps it's just the result of inflammation caused by some sort of autoimmune problem?

Pseudothink, as an arthritis patient myself, I can guarantee you that those symptoms are common to many types of arthritis.

Yes, there is more to rheumatology than just explaining joint and joint-related pain. There are more than 100 different types of arthritis, and most of them have little to nothing to do with joint pain. Most, in fact, are auto-immune disorders, and they seem to need an environmental "trigger" of some sort. For you, that may well have been Lyme disease.

Do you best to ensure that the rheumatologist that you see is working in a rheumatology clinic at a teaching hospital. These doctors are clincian/researchers, and are constantly moving that "cutting edge" forwards.

Remember that you don't need a clue as to which tests any doctor will run. Your role as a patient is to be as honest as you can be with your personal and family histories, with your reactions to the physical exam, and with your answers to the questions that any doctor will then pose. Based on all of that, a doctor will decide which tests, both imaging and lab, should be run in order to assist in finding your diagnosis. And that can take a long time. We see that process in a very, very condensed version on the show "House", but it can take years. And everything that gets ruled out is actually a step forward simply because the diagnosis of less-well known problem is about ruling out the more common of the potential explanations. Doctors, after all, are trained to think horses, not zebras, when they hear hoof beats.

http://www.roadback.org/

And you should be livid that her doctors were dismissive of her symptoms as being "old age". Neither pain nor cognitive issues are normal at any stage of life, including in geriatric patients.

But that doesn't mean that your mother has Lyme disease. My 82-year-old mother shouldn't be living alone any longer, and probably should be in a nursing home instead. Yes, she has chronic pain, but that's because she has osteoarthritis (and can't take the more effective pain meds), has a burnt-out case of an inflammatory form of arthritis and, separate from that, has cognitive problems that have just barely crossed the line into dementia. She has never, NEVER, been bitten by a tick.

Your mother's pain can be the result of any number of undiagnosed problems. There are many different causes and types of dementia. You can do something to help your mother, and that something may help her to return to being closer to the mother that you miss. You can make certain that she sees a good rheumatologist and that she sees a gerontologist who is not working at that nursing home.

No. You are not trained to interpret symptoms, test results, etc. But you can and should insist on being further assessed by specialists. If you go to a specialist in a given field and that doctor doesn't think that it's the right field for you, you'll be sent to someone in a more appropriate field for you. But diagnosing yourself is akin to pleading your own case in court, except that when you self-diagnose, you can end up in the morgue.

Doctor, how many patients have you seen who have had surgery and DON'T display any symptoms of "chronic" Lyme disease? And how many patients have you seen to who do display symptoms of "chronic" Lyme disease but have never had surgery?

AKA, your control group consists of? Empirical proof needs studies that include control groups. It also needs multiple studies, constructed in the same manner, run in different places by different research teams, with different people in both groups of each study, and all of the studies being able to replicate the results of one another. Do you have that proof?

If you wait for double-blind studies, the US will never come up with the answers! There is another concept of testing that is called proving. If I have a number of cases of Lyme disease that I have cured, that proves I have done something to affect the case.

Even Louis Pasteur, who came up with the germ theory of disease, recanted on his deathbed and said, the germ is nothing, the terrain is all!

I am an active medical physician (40+ years practicing medicine) and it would be totally unethical for me to use patients in a blind study. People come to see me to get better and not be part of experimental test. If they want to be part of experimental test, they can sign-up someplace with some pharmaceutical research or something like that.

My job is to figure out what created the problem in the first place and then reverse it and get the patient better. I would match my results with "lyme"the disease with anyone out there. If I have to wait for the system to find an answer, then I would have to tell the patient that there is nothing that I can do because the system says that there is nothing that can be done at the present time. Also, the US ranks 49th in the world in healthcare and longevity according to the World Health Organization, so why should I wait for these so-called "experts" to come up with an answer before I treat any cases.

Albert Einstein said, "insanity is doing the same thing over and over again and expecting a different result". That's exactly what you're talking about!

Dr. B, inflammation from surgery resolves. The inflammation from surgery does not persist for years, trapped nor is there any evidence that this would induce say, autoimmunity which would cause persistent systemic inflammation in many cases. It sounds like you are saying that lyme, presumably chronic, would not be infectious in origin (note: I do not believe in chronic lyme).

Pasteur never said what you mentioned above. In fact, infectious disease denialists such as ones who proclaim that AIDS is not caused by HIV believe that Pasteur recanted his theory on his deathbed - which is a known fabrication. Curious doctor, do you wash your hands before you see patients?

I have been studying inflammation by viewing the live blood for the past 25 years. Just by watching an account in the size of the platelets can tell you how much inflammation there is. Platelets are the bodies first reaction against an injury which creates an inflammation and that starts up the healing process. A platelet count is very important and it's meaning is passed over by traditional allopathic medicine today.

I am a surgeon and my hands are always clean. I was a trauma surgeon in Vietnam from 1968 to 1969.

By the way, I do not believe that there is inherent in the forest that has an autoimmune disease and is supposedly allergic to itself. Do you believe that we have diseases that have been created because we are allergic to ourselves? That's what autoimmune means.

Yes I believe that autoimmunity exists and it some manifestations are horribly underdiagnosed (CIDP springs to mind for underdiagnosed autoimmunity). It seems so absurd that the tolerance to self would break down, but it does in some susceptible people. That is one theory of the so called chronic lyme - the infection itself has been eradicated but there potentially is molecular mimicry occurring, where now the immune system recognizes tissues as foreign, such as in the joints. Prolonged courses of antibiotics are useless in treating autoimmunity in the absence of infection, and have the potential to encourage development of abx-resistant bacteria not to mention the side effects of just a single course of abx. Autoimmunity of any type is a tricky disease to treat as you no doubt know.

I would be interested in sources for the platelet size and inflammatory status in the body; this is the first time I have heard of this.

read the book "Doctors Are More Harmful Than Germs".There is also a concept that was supported by several Nobel Prize winners called Homotoxicology. There are charts that have been developed explaining the above concept.

If you cut your arm for example, the first response body has is to bring in platelets to seal off the bleeding. Also, if you research it, you will find that platelets contain many proteins called cytokines which are major immune response molecules.

I meant to say in the above paragraph that I believe there is not a deer in the forest that suffers from an autoimmune disease or being allergic to itself.

I'm probably in need of my morning caffeine, but I don't get your deer comment. I am probably being too literal though. As a doctor, you must know that autoimmunity represent a real medical burden to many?

Autoimmune diseases are increasing dramatically in our society today. However, I do not believe we are allergic to ourselves and I believe that the medical system has created the term autoimmune because frankly, they have been total failures and do not know what they're doing. Traditional medicine in the US today has not found a cause or cure of one chronic disease in 100 years and therefore they are not experts!

Autoimmune means we are allergic to ourselves. There is no way I believe that! As I have said previously, I do not believe that there is a deer forest that is allergic to itself, because that's what autoimmune means.

I wish you the best and see if you can find a good craniosacral osteopath who can probably help. Also, look up the September issue of the Townsend newsletter and there is a letter to the editor that I wrote that explains my philosophy on "lyme" disease.

An allergy is when your immune system perceives something put into your body as foreign, that is not an infection. Pollen, penicillin, eggs, peanuts, etc etc may cause a release histamine in susceptible individuals.

Autoimmunity is when your immune system attacks its own tissues. Not the same as an allergy.

BTW, I don't follow the homeopathy practice. Water does not have memory and more diluted does not equal more potent. Homotoxicology has been debunked time and time again. I will look up the letter you wrote in Townsend as I am curious.

Who debunked Homotoxicology?if it was the American medical experts, then you know my feelings on those people. Homotoxicology was backed up by several Nobel Prize winners, Otto Warburg and Albert Szvent-Giorgi specifically.

If you keep on looking for the germ and trying to treat that, you will never get better

Dr. B, we are in agreement on the germ part for chronic lyme. The germ's been eradicated, it's the lingering response against self, probably d/t molecular mimicry, that causes the lingering sx. Fix that, fix the patient. Keep treating with rounds and rounds of abx, keep the patient sick.

Well stated.

I have not had the extensive medical care as you have listed due to having a limited insurance, but I have seen doctor after doctor to treat the symptoms I am showing and to test for the possible illnesses I may have. Of course, nothing is working when it comes to making me better. Yes the medicine may take away some pain or cover my symptoms, but when those medicines are taken away, I am just as sick, if not more sick, as I was previously. I have been ill for 12 of my 20 years, and I can tell you it is not all in my head. The doctors know there is something wrong, but refuse to admit it is lyme, though they are unable to find any other cause. I was tested years ago and came back positive, but the doctor gave me under 2 months of antibiotics and sent me on my way. I have had the symptoms in the orders of the stages lyme is said to have, and I have a herx everytime I am put on an antibiotic for something like bronchitis. I refuse to believe that everything I am feeling or going through is a lie.

To those who agree with this article, you have no idea. Just because you're ill with one of the illnesses that lyme can look like doesn't mean you have the medical knowledge to state whether it is real or not. You are ignorant, and until you have more knowledge on the topic, or have gone through what those of us who suffer from lyme daily, then be respectful and shut your mouths. Everyone is entitled to an opinion, but you need to learn when it is time to back off.

And to go along with what hope said, it is not like I don't go through a single day wishing that I wasn't sick. I'm a college student with a part time job who is too sick to make it to most of her classes because she can't get the rest or help she needs medical wise. Every day I wish that I could be a "normal" college student. I am in a constant fight to show my teachers and those around me that, even though I am struggling so much, I can still graduate college without having to take time off or take less classes a term. And yet, unlike most of you, I go through everyday with a smile on my face. It's really hard sometimes, but I do not want others to know that each push forward is killing me inside. I'm not going to give up with trying to fight this illness, and I'm not going to let any of you cynics get in my way.

rerae, what you've said simply makes you a walking advertisement for the desperate need for universal health insurance. That way, you can go to the doctor who you need to see (rheumatologist) who can do a far better job of finding your proper diagnosis, and then help you to manage it.

The number of meds tools for managing auto-immune illnesses are increasing by leaps and bounds, because they are the direct result of the research being done into the genetics of auto-immune problems. And meds are not the only management tools available to anyone.

Medical management tools are the first step. THe second is being able to cure, and the third and final is being able to prevent. That's where the research is going.

iInd a way to see a rheumatologist. Seeing one in a teaching hospital-based clinic is your best bet.

I have seen a few rheumatologists. They have checked me for many different things. You don't know my situation, or any of these others situations. Just because it has not been completely uncovered yet, doesn't mean lyme doesn't exist. You have your opinion as I have mine. Don't sit here and tell me what you believe is best for me when you don't even know me, or my case.

You really have no idea.

Are you in significant pain. Do you need pain meds or psychotropics to make it through the day? Do these meds not really work for you anyway?

Were you highly functional one day, and caught some kind of flu-like illness that never went away.

Can you work? Can you drive a car? If so, can you drive a car without feeling lost?

Do you have terrible insomnia that can last for many days no matter how tired you may be? Do you wake at 4 AM every night feeling very sick?

Do you ever feel like you are going to die, and this feeling lingers for days or weeks? I am not talking about a thought. A feeling.

Have you ever had panic attacks that last the whole day or several days? Have you ever been to the hospital with a heart rate of over 200 bpm that wouldn't come down without beta blockers (heart medication), anxiolytics, and pain medicine for angina? Have you ever shown up to a hospital with triage thinking you are having a heart attack? I have, at 24 years old.

Do you ever go partially functional for several days or weeks, and for the next week you can't get out of bed because of pain/discomfort?

Do you have significant chest pain all the time? I do. It's better than it used to be thank god. It would be nice if it goes away.

Do you have hundreds of thousands of dollars in medical bills, and tens of thousands of dollars of out of pocket expenses? Have you been to your primary care physician, neurologist, psychiatrist, opthamologist, rheumatologist, endocrinologist with no answers? I have.

Do you have mitochondrial dysfunction? Do you not convert oxygen to energy properly. I don't. My fitness profile is in the bottom 1% of the population, and I used to be a super athlete and mountain biked 30 miles a day in the Sierra Nevada mountains. Now I get winded walking up the stairs slowly.

I have both CFS and Chronic Lyme Disease, and yes, some doctors and researchers are finding that these two diseases may be linked (XMRV retrovirus). My CFS doctor at first thought that I really didn't have Lyme Disease and CFS. In fact, he told me he really didn't believe in Chronic Lyme Disease anymore (I am in TX).

I got a phone call back from the nurse saying that the doctor thinks I do in fact have Lyme Disease.

I think a majority of people with Chronic Lyme Disease may have the newly discovered CFS retrovirus (HIV is a retrovirus) as well. However, I think a number of infections can trigger CFS.

I am much better than I was, but unfortunately I am not well. I have to live with my parents now as I still can't drive a car or work. I gave my car to my older sister.

Now that being said, if you met me and I didn't tell you anything, you probably couldn't guess that I am sick. I can walk, talk, and look otherwise normal. I go out when I feel ok enough to do so, but in reality I am suffering and feeling symptoms all the time.

You obviously don't know anything about CFS, Fibro, or Lyme. There are many that are bed or wheelchair bound. You won't see the most serious cases, because those people can't leave their room for a number of reasons (neurological, sensitivity to any stimulation, severe pain, etc).

Why don't you just thank god that you have your health. Some of us are not so fortunate. I am 24, and these ARE NOT aches and pains of daily living. Step back and have compassion for others. You can't even compare yourself to others with these conditions, so please don't try.

Kyle:

I truly understand your maladies and the pain you endure everyday. I have utmost Empathy for you as you are so young & must live the rest of your life with such. I just now posted my history and am with you on those who are healthy to Thank God each day they are.

I'm beginning to see that the younger generation is more apt to help me open the heavy doors that doctor's use, which I do not understand. I had one young nurses aid who helped me with my scooter as I was at my Breast Specialist & it was sunny when I went in, but was storming when I came out. I tried to wait the storm out, but the pain was getting to severe & knew I had a 40 mile drive home. The wind was blowing my umbrella wrong side out.

This young lady told me to hold onto my umbrella & step back with my rollator. She was a very thin young lady; however, she didn't mess with the remote control. She just picked up my scooter and put it in the back of my van and took off down the hill to the employees parking lot. I was so upset I didn't see her name tag. There are lots of doctor's offices &a surgical center in the lower floor of this building. I would say she was in her young 20's.

It's my generation (the baby boomers) who just look at me & don't even try to help me open doors. I carry a small cane with a handle on it to try to open the doors; however, it's getting to the point where I call the office & tell them I'm at the door & to please send someone to open it.

Wish a healthy person could just spend one full day 'in our shoes' and I'm sure their thinking and their life would be changed for the betterment of those who are severely handicapped.

Will add you to my morning & evening Prayers as I've come to realize that Prayers are quite Mighty. God Bless you Kyle.

Kyle, sorry, I didn't mean to sound unfeeling. I was just expressing that the symptoms listed were very general. As a sufferer of severe chronic migraines I am not indifferent to pain and suffering. Without my preventive meds (2 anti convulsants) I would likely be in bed in a dark room every day. As it is I still have a migraine to some degree every day. I also have fibromyalgia, which means my whole body hurts every day. I can't take NSAIDS for fear of rebound headaches, which I have experienced-it's better just to stretch and do relaxation exercises for the pain. I also don't take narcotics due to being a recovering alcoholic. There are days when I can hardly move-like you, no one can see anything wrong with me, so there is no sympathy at all. Without meds I don't sleep at all, period. Since the mind can't go without sleep, I start to lose it after about 3 nights. I have had a positive test for narcolepsy some years ago, though the doctor questioned whether it was valid. I still sleep more than 12 hours-some days I'm only up for about 5 hours or so. I also have neurological problems-my neurologist thinks I have a neuropathy, though nothing has ever shown up. I gave up talking to doctors about all of this long ago-I'm doing well to have a doctor who believes fibromyalgia exists. Can't tell you how many docs have thought things were all in my head, even in the ER. Once I was denied not only treatment but also food and water for 48 hours in the hospital when I had a spinal headache from a spinal tap received in their ER. My own family doesn't believe I'm sick. So I'm sorry if I came across as not caring. I didn't mean to.

P.S. The last time I showed up at the hospital with a heart problem (PVC's) they just shoved me into the back of the ER and left me alone all night without even monitoring me. After 6 hours when I fell asleep they did an EKG which picked up nothing, then they sent me home. I discovered later that I do have an anomaly in my valve which causes the PVC's.

Just a few more additions. Kyle, I really do feel for you. Believe it or not I have seen a lot of people like you, as I was once team leader of a chronic pain/industrial rehab center. So I have seen extreme amounts of disability due to pain and fibromyalgia. No one discussed chronic lyme back then. I never thought I would wind up in their shoes! At least I do have a good bit of knowledge of how to self treat and make myself as functional as possible. Part of me is probably jealous that you have doctors that actually listen to you and take you seriously. I have to walk on eggshells around the docs I have b/c too often I've had docs who were fine turn on me and suddenly start offering Xanax for everything from fevers to coughs. That's when I know I have to find another doc. At that point they will never investigate anything or do any testing or anything b/c they've made up their minds that everything, and I mean everything is all in my head.

That seems to be a trend these days. My husband says his PA treats him that way, and he's never had a psychiatric problem or taken an antidepressant in his life! It seriously ticks me off! I know there's a connection between mind and body and all that, but EVERYTHING is not all in your head. I wonder if they do that b/c they're too lazy to do testing. I've just given up and pretty much keep it all to myself.

Thanks for your replies. Sorry that I misinterpreted your post. I thought you were just one of the common folks bashing people with these diseases/syndromes.

Sorry about that, and I definitely know what you mean about doctors using Xanax for everything.

When I ended up in the hospital after I got ill, I usually ended up on Ativan with a suggestion to see a psychiatrist. It didn't matter that my heart reached over 200 bpm, and stayed over 100 bpm while sedated to sleep in the ER. Most doctors really just don't care.

I'm lucky to have a team of doctors that listens to me without trying to pull a new psychiatric diagnosis out of their hat. Sure, I have anxiety, and it used to be terrible. It was the worst anxiety my doctor has seen in his career (and he was an older doctor). However, most doctors still don't understand that severe anxiety like I had was the consequence of a disease state, not because of my mind.

You're right, but as the ILADS doctors noted, the IDSA has financial ties to companies that treat symptoms rather than cure Lyme.

RIGHT ON! HARVEY! My son and I were full of mold, mercury & other additives from vaccines. etc. That made us horrifically sick in addition to the poisons from Lyme & co-infections!

We were detoxed via www.AdvancedCellTraining.com -ACT, which worked amazingly~And have had long term involvement in the process. Even to address the emotional trauma caused by the lack of help as well as personal struggles!

After being poisoned by the heparin from China, which killed thousands, I could no longer try antibiotics, they were now poison. My son, too, could only take so much of the antibiotics before he had an adverse reaction!

The ionic foot bath does great...you actually see the flakes of heavy metal.