Many patients who have been diagnosed with ME/CFS will empathise with this list below. These are remarks made by doctors and consultants who stick rigidly to the IDSA 2006 discredited Guidelines.
These excuses are so pathetic you will probably be bored reading them and wonder how doctors who we have spent vast sums of money and so long educating them could possibly come out with so much rubbish.
a.) People in the community (advocacy groups, media publicity,sympathetic physicians and prominent individuals in society) are able to convince patients they are still sick when they really aren’t(functional somatic syndrome);
b.) Stress can be the cause of remaining physical symptoms after being bitten by ticks;
c.) Secondary gain (patient has hidden motive for wanting to remain ill);
d.) Prior undiagnosed psychiatric disorders (some from as far back as childhood) that don’t appear in individuals until after they have a tickbite;
e.) Even while living in endemic areas, having a tick bite, EM rash, positive lab work and showing improvement on antibiotic therapy- many of the IDSA supporters claim, without examining patients, that they never actually had Lyme disease in the first place so they can’t possibly have chronic Lyme disease;
f.) They feel patients experience improvement due to the placebo effect, so those with continuing symptoms are just easily influenced into believing they are still sick when they aren’t;
g.) If tests don’t support the IDSA’s position, they are being labeled as producing too many false-positives by the IDSA and therefore, theLyme symptoms remaining must be discounted because the lab tests are inaccurate and the patient can’t have Lyme disease;
h.) Patients that are well-documented, even those house-bound or in the hospital, must have had another tick bite at some point that is causing the continuing symptoms;
i.) A pre-infection emotional state that was never detected or diagnosed is suddenly discovered after getting Lyme disease;
j.) The “no one else had these symptoms before you did, so you can’t have Lyme” theory;
k.) IDSA feels other doctors are not as versed as they happen to be and are part of the problem because they are telling patients they have Lyme disease and they treat them for it when they don’t actually have it;
l.) Patients often decide on their own they have chronic Lyme disease because they don’t like the stigma attached to having unexplained chronic symptoms after having a tick bite and contracting Lyme disease;
m.) There is not enough research being done on how to explain to patients that they aren’t suffering from Lyme (when they really are) and more research ($$) is needed by the IDSA so they can figure out how to explain that to patients so they believe what they are being told;
n.) Patients have symptoms but they aren’t the same symptoms the IDSA authors have listed in their Guidelines, so it can’t be Lyme disease;
o.) You are a female or you are getting older and the symptoms you have just became noticeable to you since you got Lyme disease;
p.) Your symptoms aren’t bad enough to be Lyme disease, or the opposite,the symptoms are too severe to be Lyme disease;
q.) People in the general population can have those symptoms, so they can’t be Lyme related;
r.) Doctors treating children in endemic areas don’t know the difference between mosquito bites and tick bites and falsely label patients who are experiencing Lyme symptoms with having Lyme;
s.) Anxiety about the illness, derived from reading information on the Internet, causes patients to remain ill and think they have chronic Lyme disease;
t.) The authoritative “you are not sick because I said so” theory;
u.) Patients develop an unexplained personality disorder, or fibromyalgia, or depression, but only after having a bite from a tick infected with Lyme disease, so it is a coincidence and is unrelated.
In my case a Professor of Rheumatology at a top London Hospital wrote to my GP, she had referred me to him as he had been recommended by the HPA as someone taking an interest in Lyme Disease. In his letter to my GP he wrote that I was someone suffering from 'Lyme Neurosis due to her reading around the subject. Her condition is chronic fatigue syndrome.' He had found signs of arthritis in hip shoulders and bursitis. Having found these signs during examination he asked me, what I had done to sprain my wrists. DUUR! I was there saying that I had these symptoms in all my major joints and had done so for several years.
What was his recommendation
1. wean herself off antibiotics
2. Consider Amitriptyline or Dothiepin therapy.
3. Consider cognititive behaviour therapy.
How must my GP have felt when she read his letter, in view of the fact that it was her not me who had suspected Lyme Disease and I had responded to the antibiotics used to treat Lyme Disease. Thankfully she did not accept his diagnosis or his recommendation. I have to add that depression had never been one of my symptoms throughout my illness although I have since learnt that it can be a symptom that Lyme patients suffer with. As to CBT well I think those chronically sick learn far better coping strategies than any therapist can dream up.
So where am I now. Well many months of antibiotics have returned me to nearly full health better than for many years. I have no arthritis or muscle weakness. I still have a few Lyme like symptoms that cycle four weekly but my immune system is coping for now. Most importantly I am not currently on antibiotics.
My LLMD was amused by the Lyme Neurosis diagnosis clearly the Professor had invented a new illness.
What else you might say, well at the time of my consultation I did not have access to a computer so was not able to read information on the internet as he had suggested to me during my appointment, but since going on line I have made up for lost time. I will happily accept I now have 'Lyme Neurosis' but no pain, what a pity that the Professor hasn't got Lyme Neurosis too, he might learn something of the successes of his medical colleagues who do take time to properly research this illness.
Sadly how many more patients have been through this Professors hands and been denied treatment that could help them, some I have since met through the internet and they like me are recovering. What a pity these consultants don't get to see the outcome of their mistakes whilst we the patients can be left to suffer the consequences.
Does this all sound familiar to people with ME/CFS especially now in the light of the discovery of this new XMRV retrovirus.