I've been out on vacation and haven't posted much lately, but I thought I'd respond to your post. Your experience with the ID doc is very typical of those of Lyme patients with ID docs around the world. The ID docs are told that the ELISA is very good as a screening test and the Western Blot is even better.
They have been fed sham statistics about how great these tests are, despite repeated and extended evidence that they miss too many cases. They've also been told at conferences and via gossip and news articles with quotes from health officials that there are patients who THINK they have Lyme who can be very insistent and very difficult, and the doctors willing to give them a diagnosis without a positive lab test and give them long term antibiotics are dangerous quacks.
In recently exposed emails, the CDC and IDSA called us "Lyme loonies." This contempt is most apparent in Infectious Disease doctors. They are at a much higher risk of severe professional consequences for going outside the guidelines than are other specialists. The IDSA simply doesn't seem to tolerate dissension when it comes to Lyme. One blogging LLMD called Lyme the "third rail" of medicine, referring to that 3rd rail of electrified trains that will kill you the instant you touch it. There are too many patient stories of being treated rudely or even kicked out of a doctor's office or practice for daring to press the Lyme question. I haven't heard of that happening for any other disease.
Study after study has shown that the ELISA consistently misses at least 30% of Lyme cases, but the Infectious Disease Society of America and the CDC consistently ignore these studies in spite of over 15 years of protests and complaints by physicians and patients experiencing false negatives. The Lyme committee that recommended the ELISA as a screening test had one or more members with patents on the ELISA that made money in royalites off the test.
The CDC ran a study a couple years ago to use their 2-tier testing protocol against a European strain of Borrelia, and found it was only 50% accurate. Since LLMDs in the U.S. already insist that the CDC 2-tier protocol misses nearly half of actual Lyme patients, that would probably put its real-life accuracy against European Lyme at something more like 25%. Perhaps you could find the summary of this study and show it to your ID doc. I believe I saw it in PubMed.
I am mystified as to why any other country would blindly accept and use the CDC testing protocol when it was developed using only New England-based, newly infected Lyme patients who had bulls eye rashes. It has never been validated on patients in other regions of the country, and was only recently validated against European strains in the study I mentioned. It has never been validated on late-stage Lyme patients, especially those with co-infections, whose antibodies look different. Nor has it been validated on people who took insufficient antibiotics to treat it, since antibiotics can interfere with antibody production.
Since the study summary used the word "strains" and not "species", I assume they tested it against European strains of Borrelia Burgdorferi. It is safe to assume that we have no idea how the tests perform against different SPECIES, such as Borrelia Garinii, which is well known for causing neuroborreliosis in Western Europe. I believe I have b. garinii. My symptoms are most consistent with this species. My illness mostly mimicked MS and IBS and I also had numerous brain lesions. (I have Babesia, too.)
Some LLMDs are now saying that it's the coinfection of Bartonella that is causing these brain lesions, not the Lyme itself. This would explain why some neuroborreliosis patients have the brain lesions and other equally sick patients don't. (Some have Bartonella and some don't.) I was also diagnosed and treated for Bartonella. It had messed up my gut and caused Peliosis Hepatis, which showed up on a CT scan. I ended up in the hospital with severe liver pain and swelling. The GI doc completely missed my Peliosis and told me my liver was "normal" in spite of the multiple problems seen on the scan. He misdiagnosed me with a "focal nodular hyperplasia" instead.
Bartonella is emerging as a far more widespread and serious disease than previously realized. There is an article about a narrow CDC study done on Bartonella in a Lyme endemic region (Maryland) published in the EID May 2012 issue. They found a whole lot of Bartonella in a rheumatologist's patients. Over half of the Lyme diagnosed patients in the study showed signs of Bartonella and there was a lot of symptom overlap with Lyme.
Given your brain lesions, it's definitely worth a Bartonella test. Just note that a good percentage of patients with it test false negative. I seem to remember one stat in the EID article that about 62% of people with Bartonella tested positive in their "limited access laboratory". That statistic would be much lower at the regular labs where we patients get much less sophisticated testing. (IGeneX is said by many ILADS docs to do a better job of finding it.)
Unfortunately, doctors are oblivious to Bartonella and inadequate tests for it, too.
Even if you could convince your doc to run a Western Blot for Lyme or even give you Doxy or Rocephin, the reality is that the NHS will not allow a doc to treat you for more than 4 weeks. If you're already well into MS-like symptoms and brain lesions, you'll need a whole lot more than that, especially if you've got Bartonella as a coinfection. You'll need an LLMD, which is not an ID doc. It's very unusual for mainstream docs to write a referral to a doc who gives long term antibiotics for Lyme. You'll most likely need to find a private doctor, or travel to Germany or the U.S. for proper treatment. You might be able to find a doctor who will quietly treat you in England-based support groups.
Sorry you're dealing with this! I hope I didn't unload too much info on you at once. This is a hard journey to take, both the illness and dealing with a medical establishment that does not put patient care at the top of its priority list. It's hard to comprehend the denials.
I encourage you to become your own advocate, and don't expect doctors or any "health system" to look out for you or act in your own best interests. Being persistent can often be very effective. Hang in there and keep seeking out support from others who've gone through it already! You can get better with treatment!
Hi, first I want to tell you that I had so many neurological symptoms that they did a brain MRI. I had lesions and was misdiagnosed with MS.
When I got to an LLMD she said they were Lyme lesions and I don't have MS. That happens very often. Unless you have a Lyme literate radiologist, it is often misdiagnosed.
Often times Dr's want to give you steroids. Do not take them. They can make Lyme patients very ill.
For mainstream doctors the ELISA is very sensitive. We don't think so here unless IgeneX does them. I would just test Western Blot and for co-infections.
You can go on the IgeneX labs website and call them to see if you can send your blood to them. Maybe then you can get some real help.
I am sorry you are frustrated. Sad thing is most of us have been there in our struggle to get diagnosed correctly.
Keep us updated ok?
Add to that a CD-57 by any lab. It may be useful in showing how ill you are.
This is per IgeneX when I talked to them.
I know that the NHS probably has a slightly different ELISA test than the CDC but the NHS closely follows the CDC critria.
" studies conducted by the group responsible for Lyme Disease proficiency testing for the College of American Pathologists (CAP) concluded that the currently available ELISA assays for Lyme Disease do not have adequate sensitivity to be part of the two-tiered approach of the CDC/ASPHLD,"
"The reason that most ELISA assays are inadequate as screening tests is that they were not designed by the manufacturers to be sensitive at the 95% confidence level, the level typically required for screening.5 In fact, Luger and Krause found up to a 56% false-negative rate (depending upon the commercial kit), when compared to their clinical diagnoses.7 Golightly et al. observed a lack of sensitivity (over a 70% false-negative rate) with commercial kits in early Lyme disease and from 4 to 46% with late manifestations of Lyme disease."
A very long but very interesting series of emails between the FOIA and a person questioning the use of the ELISA.
Another example of how Lyme disease is denied---- this in the UK, maybe Europe also.
Bada-UK had this;
"NHS Map of Medicine Lyme Disease Guide
The NHS Map of Medicine produced a guide to Lyme disease until early 2012 when the site was revised and the page deleted. We have provided below the PDF version.
nhs map of medicine_lyme borreliosis_2010.''
[I tried to download it but was sent right back to the original page.]
"This map of medicine was due to be reviewed at the end of May 2012. Instead it has been removed from this site. When I asked why I was sent the following message.
"The aim of the Map of Medicine is to offer pathways that will be of
value to our users, and reflect how clinical topics are dealt with in
clinical practice. In accordance with our methodology we have analysed
key data to determine the justification for the Lyme disease pathway,
balanced against the resource requirements to maintain it and its
anticipated use. The outcome of this analysis is that we have decided
not to retain and update this topic currently. However, if circumstances
change in the future, we will be sure to republish the pathway."
Why the denial whats the sketch?
According to the uk southampton branch the doc told me he has already done a lyme test he did an ELISA and then he did a western blot. But they only do a western blot if the ELISA comes back positive right? He said he cant give me any other info and my gp shoukd have the results tomorrow. I am going to email this link to my ID consultant tomorrow he wont read it and will be fuming i sent it probaly report me for harrassment looool.
Apart from lyme and ms what else cause cns inflammation in spinal fluod only apparantly i have tested positive for o bands i asked the neuro how many o bands have i got as he said it was suggestive for ms and he said we dont measurse them in numbers. Huhhhhh thats the first ive heard.
A well know Dr in the States, James Schaller, is saying in his many publications that there are so many more cases of Bartonella now ( which I have) that he is questioning if Bartonella is the co-infection of Lyme.
i removed the tweet because here in the uk you can get arrested for harassing doctors etc hahaha...and I don't want that.
I'm sorry--- I don't understand your question, nazzyb.
"Why the denial whats the sketch?"
Is the word 'sketch' a British slang word? Or colloquialism?
It helps if punctuation marks are put into a sentence or paragraph, also.:)
Just so I'm clear---- you said " I am going to email this link to my ID consultant tomorrow". Do you mean you sent the link to THIS thread to your doctor/consultant?
You later said you removed a tweet------ was the link to this thread in that tweet? (I know you said you removed it but I wonder how long it was up and how many people read it or copied it.)
Sorry, meant to say above if Lyme is the co-infection of Bart's.
Let us know what your Western Blot results are. I have heard that UK Lyme testing is nearly worthless. That's just hearsay, but since officials say it's really rare there, and lots of miserable people from the U.K. are complaining on the message boards about testing negative and getting no help, I would guess there's some truth to this hearsay.
Most big commercial labs in the U.S. use mass produced test kits that only look at the CDC bands in the test criteria and only use a single strain of Bb from Shelter Island in New York. If I had done one of these tests, I would only have shown band 41, and I would have been told there's no way I had Lyme.
But since I got my WB at IGeneX and they show a lot more bands, I could see I had two highly Lyme indicative bands on my IgM (18 & 31) that the CDC ignores. IGeneX called it positive. The CDC called it negative. I am so grateful for IGeneX and my LLMD. I think they saved my life. (Forgive my broken record... Most doctors know nothing about the "bands" in the WB and think a "negative" excludes Lyme.)
There are plenty of late stage Lyme patients who just don't produce many antibodies at all anymore, and test negative even at IGeneX. This is when you need a doctor skilled in making clinical diagnoses, which is an experienced LLMD.
I also thought docs counted the Oligoclonal bands in the spinal fluid and compared them to the count in the blood serum as part of their work up for MS. I think part of the diagnostic criteria is having a minimum number in the spinal fluid that is more than the number in the blood. Neuro Lyme can easily mimic MS. Even a Harvard neurologist has commented on how well Lyme can mimic MS. (People with Lyme sometimes have O-bands in their spinal fluid, too. A big clue is when MS treatment makes the patient worse. Then it's probably Lyme. Too bad they don't try antibotics before trying immune suppressants.)
Try googling the words Lyme misdiagnosed MS and you'll find a variety of articles and testimonials about it.
There are some people on the MS forum who are very knowledgeable about the diagnostic criteria for MS and they may be able to give you some insight into the O-bands question. I have found they're not very familiar with Lyme, though. Not a criticism at all... just an observation. I am also not very familiar with diseases I don't have.
A big question is, are any of your brain lesions enhanced during active symptoms? If you're having new/ongoing MS symptoms then there should be an enhanced lesion in your brain or spinal chord under contrast in an MRI. I had about 20 little lesions, but they were scattered all over the white matter. My neuro said for MS, he'd expect fewer, they'd be a little bigger, and not as widely scattered. He said at least one should be enhanced since I had recent and ongoing symptoms. I have read about one woman who had two enhanced lesions on her cervical spinal chord, was diagnosed with MS and got much sicker with meds. Turned out she had Lyme. You can see why telling the difference can be so tricky. Both illnesses have wide variations in their presentation with few "absolutes".
What is really different about MS vs. Lyme, though, is that with Lyme the symptoms can seem to randomly come and go, wax and wane. My first neuro explained that MS symptoms usually show up and stay for the duration of the attack, which can be days to months. MS symptoms in an attack usually appears on just one side of the body, but Lyme symptoms can move around and cross the body. If there are some weird symptoms that neither MS or Lyme explain, you could have a coinfection of Lyme, another tick borne infection such as Babesia or Anaplasma or Bartonella. Lyme + Bartonella can cause a "preponderance of neurological symptoms", according to Dr. Burrascano.
And so another big question for you is Do you have other symptoms not attributable to MS? Many neuros will dismiss such symptoms as "normal" or "common" or from some other condition or due to stress. Have you seen the Burrascano symptom checklist? That's what convinced me I had Lyme. I had conditions attributed to aging that I didn't even know were symptoms, such as light sensitivity, tinnitus, hormone imbalance, the early stages of forgetfulness, and saying the wrong word. The symptoms list isn't complete, though. There are others.
I have a friend whose husband has Parkinson's. His new Integrative physician told him of a small study where the brains of 10 Parkinsons patients were autopsied after death. Remarkably, EIGHT of them did NOT actually have Parkinson's!
The doc said this could explain why many Parkinson's patients don't respond to treatment. Because they are misdiagnosed and have something else!! (I wonder how many had Lyme! Too bad they didn't look for it.) I tell this story just to point out that despite neurologists' position high in the medical establishment pecking order, there is a great deal they don't know and much they can't explain. Many neurological conditions are primarily clinical diagnoses, as Lyme should be, too. We just need them to acknowledge this and learn how to do it like the LLMDs do. Not sure when that is going to happen.
I was just reading this article and thought you might like to show a copy to your doc who insists the ELISA is very accurate. In it, a couple German docs talk about testing, coinfections, prevalence of Lyme, etc. One specifically mentions the ELISA and how more recent studies show it only accurately finds 30% of cases, missing up to 70%. (I would love to know what the studies are. I have no idea if they're publicly available.)