Hi all, I was wondering if anybody could help me out and confirm if they have experienced any of the following, been misdiagnosed with MS. Bear with me as this might be a bit long winded!
In the end of September 2007 I was on holiday in North America. As I had no knowledge of tick bites at that time I did very little if anything at all to cover up my ankles and feet. Whilst on holiday towards the end of the week I felt unusually drained, not tired but just no motivation to do anything.
On return to the UK approximately 4 weeks later I had a persistant non productive cough which lasted for weeks, on top of that I had headaches around the frontal section of my head which would come and go, some days it would be there and others not, this eventually cleared. On top of that I had a stomach bug which did clear within a fortnight.
Fast forward to February 2008, I woke up one morning and both my feet felt cold, not numb but cold, a few days later I developed tingling.
7 days later after the feet problem started I developed optic neuritis in my right eye with pain on moving to the right complete with a lot of floaters in my field of vision. Eye doc confirmed the optic nerve was swollen around the middle(?). My left eye also seemed to get effected but this was barely noticeable. Floaters were in both eyes.
Saw a neurologist who did an MRI and confirmed there was inflammation around the posterior bodies and trigones of the lateral ventricles bilaterally, no actual lesions could be seen on the scan. Did a lumbar puncture and the results were as follows.
CSF glucose 3.1 mmol/L CSF Protien 447 mg/L Oligoclonal Bands - Multiple oligoclonal bands detected in CSF there are no corresponding bands in serum. CSF I/G 141 mg/L IgG index 3.35. White cells - 26 all lymphocytes.
Blood results were within normal range. No ANA antibodies present.
I have had diagnosis of MS but no other episodes since apart from the odd bit of tingling in the feet which come and go for no reason regardless of temperature. One day it is there the other it is not.
I have experienced Raynaulds in my left hand during the cold weather twice. I have also experienced pain in my left knee together with clicking and pain in my right thumb joint neither of which I have injured.
Fatigue wise I have been able to do things but there just seems to be a lack of motivation in me, I seem to be contented lounging around which is just not like me.
Do you think in view of the above I would be wise to get a lyme test done in the UK. I would have to do this privately as the health care system we have in the UK is... well its not the best. Obviously in view of the above I dont want to go throwing money into the wind.
Welcome, sorry to hear of the miserable souvenir you took home with you from your holiday here. Don't feel bad about not covering up enough to avoid ticks -- short of a space suit, there's ultimately no way to avoid them -- several people have posted here about getting ticks on the scalp -- and many of us never saw the tick or a rash once bitten.
As patsy says, there are several members here who have been through the Lyme vs MS issue, and they can comment better than I.
As to testing, there are some labs that are considered 'better' than others because they test more extensively in order to obtain more data points. There are two regular labs here called Quest and LabCorp, which are fine organizations, but the one called Igenex in California does a more extensive test for Lyme. One of our members, *skarey* I believe, is also in the UK and has the information on how to get the testing done through Igenex even at such a distance.
All of us have different symptoms from each other, and also different symptoms through time, but a number of yours sound similar to what I went through initially. The lack of motivation is a big one -- the lassitude that leaves me not caring about anything except passively watching the hands on the clock go around. The aches and pains and also Reynaud's are not uncommon, from what I have read. Knee pain, joint clicking (my ankles), eye problems -- I have or have had them all.
There is a film trailer apparently available on line called 'Under Our Skin' about Lyme ... and also a book I found very helpful in understanding the politics of Lyme, Pamela Weintraub's 'Cure Unknown'. I think a better title would have been 'Diagnosis Obscured', but that probably doesn't grab the potential reader.
One last point: when you find an LLMD, you should also ask to be tested for co-infections commonly carried by the Lyme ticks -- including babesiosis (like malaria), ehrlichiosis, and bartonella especially. There are a few more but I don't know how testing is done for them (e.g., mycoplasmosis).
Best wishes to you, let us know how you do -- we learn a great deal from comparing notes here. None of us is an MD, to my knowledge, so we're just doing our best to muddle through, as I think you might say over there.
Patsy, Jackie, thanks very much for your helpful replies.
I have contacted the member you made mention of to obtain details on how to get the test carried out. It is a strange feeling that lassitude one but gratifying to see I am not the only one suffering with it.
Jackie there is nothing wrong with comparing notes, unfortunately I have endured a string of incompetance in the medical world over here. A friend of mine was suffering from constant cornea leakage and breaking down for 2 years due to a an accident until he went to a private doctor (long story) then the problem was solved with a quick operation, and we dont 'muddle through' things up here, I am in Scotland so the saying is 'behaving like a coo (cow) with a gun'.... if that saying makes sense.
'Behaving like a coo with a gun' -- I do like that!
Glad we can be of help here. I thought of another resource for you -- there is a group called ILADS, International Lyme and Associated Diseases, which is a bunch of MDs who take the more progressive view on Lyme that it is not like the sniffles that will be over with quickly after a couple of weeks of antibiotics [except in its very very early stages when the tick/rash are present]. ILADS has a website with good links and information. There is a 40 page treatise very accessible to nonMDs posted on the site by Dr Burrascano, one of the pioneers in the progressive school of thought. It is a few years old now but largely unchanged overall, as I understand.
One of the curses of Lyme is that once one leaves the confines of established medical opinion, there is little beyond ILADS but ailing fellow patients, some odd things on the internet, and disdain from mainstream medicine (often referred to here as MSM). For decades as Lyme spread across North America (being already established in at least some parts of Europe, in slightly different strains -- and there are many many strains of Borrelia), there were a few hearty MDs who looked at their ailing patients and went beyond the standard two weeks of antibiotics (abx) and a referral to a psychologist if you didn't shape up. These are the MDs referred to as LLMDs -- Lyme Literate MDs -- who came together to form ILADS.
ILADS is a counterweight to the MSM's Infectious Disease Society of America (IDSA), which is identified closely with the positions taken by the US Centers for Disease Control (CDC) on the definition and treatment of Lyme. In a nutshell, the CDC has set standards for diagnosis and treatment of Lyme which were based some years ago on *surveillance* standards to track the spread of Lyme across the US -- and to be certain the reports were accurate, the bar was set very high to qualify an ailment as Lyme: must have a circular rash, must have a tick, etc. Unfortunately, there were those in the IDSA who staked their careers on certain aspects of diagnosing and treating Lyme under that definition, and they adopted (and to this day cling to) the narrow definition of Lyme as requiring the rash, the tick, etc. *as a diagnostic prerequisite* -- misapplying the surveillance standard. If you don't clear the high bar of the surveillance standard, then you do not, by CDC definition, have Lyme. You may have something else, but the drs don't know what it is and many don't bestir themselves to try to find out.
Compounding the problem is the fact that the diagnostic tests are not all that accurate as to sensitivity and specificity (there are others here who can explain that better than I), and so there are many of us out here who don't meet the CDC rash/tick standards and don't show sufficiently positive on the tests. It is the ILADS doctors who have waded in to try to alleviate the suffering and debilitation that we experience daily. Diagnosis of Lyme is a *clinical* diagnosis, based of symptoms and aided by tests, but not in accord with the CDC requirements.
Every so often the IDSA MDs come out with some further pronouncement to bolster their case, but the last such release I saw was really just a cagey way of refusing to reconsider their decades of error by casting aspersions on the mental stability of those who insist they are ill with Lyme but do not meet the CDC standards.
Now you are armed to sally forth in to the fields of Lyme. Try the ILADS website, you'll find lots to think about there, and others here may also have ideas for you.
I was never diagnosed with MS, but I was being "watched" for it as my first brain MRI showed white matter lesions. However, a follow-up MRI months later was unchanged, and my LP was negative. So I sort of had the opposite test results. But only a few of my lesions were "MS-like," most were "non-specific." Lyme can cause brain lesions as well, that may or may not look like MS lesions.
From my understanding, which is by no means a replacement for a true medical opinion, Lyme can cause optic neuritis. I have no idea if ON is more often from Lyme or MS. I do know that confirmed ON increases your chances of developing MS in the future.
A big difference between Lyme and MS has to do with the distribution of symptoms. In Lyme, bilateral (or approximately so) symptoms are more common, while in MS, the symptoms are caused by damage to certain areas of the central nervous system. That means the symptoms show up in particular places and it's very unlikely to initially be even on both sides of your body. So having the same symptoms in both feet is an unusual (though not impossible) presentation of MS, since it would mean that a very symmetrical lesion had formed.
Lyme patients may not commonly have ON, but we do often have symptoms involving the eyes, and again, both eyes are usually affected. Bilateral ON is extremely rare in MS, and eye problems usually present in one eye and not the other. My eye problems include pain upon movement, flashing lights (like cameras going off) when I move my eyes(very obvious in the dark), floaters, and mild double vision (sort of like "1.5" vision, there is overlap between the images). None of these problems could be explained by an opthamologist, nor did I have any lesions visible on my optic nerve in my MRI.
You don't list these problems, but for the sake of discussion, MS does not cause joint problems or rashes, both of which are more common in Lyme. Also, symptoms that move around a lot are unlikely in MS.
There are lots of theories about links between Lyme and auto-immunity, and Lyme-induced MS. The cause of MS is not known, and some think that certain cases may be triggered by Lyme. But I don't think anyone is really sure.
If you have any concerns about a Lyme infection, you should be cautious about the treatment of your MS. Are you being treated with a DMD? I don't know much about them or how they affect the immune system, but you should keep the thought in mind. Also, MS flares are often treated with steroids. Steroids suppress the immune system, which is appropriate for treating auto-immunity but terrible if you have an underlying infection like Lyme! They may make you feel better at first (more energy, less inflammation) but if you have an infection, steroids will in the long run exacerbate your infection, causing it to worsen considerable. Again, I know just about zero regarding the MS DMD's, but I think copaxone is a better choice if you may also have Lyme. Follow up on the topic as you see fit, but don't take my word for it.
There is an MS forum here on MedHelp and they may be able to offer you advice as well. The community leader is a retired physician who has MS herself. Here's a link to it:
Lyme patients know all about incompetent doctors, as many of us go years undiagnosed. I myself was told over and over that I didn't/couldn't have it and nearly lost my mind while in diagnostic "Limbo."
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