Mar 102008

In Friday’s post I responded to a comment by “Anonymous” (Anonymous deleted the comment) with another comment questioning her knowledge of Lyme pathology. Following is part of her response (Anonymous deleted the full comment):

I know enough about Lyme. I have a close friend who claims to have “Chronic Lyme” but who I actually believe is probably suffering from either Munchausen Syndrome or hypochondria. The “dissenting research” to which you made reference has all been published by so-called “LLMDs”—the same people who stick patients on unending IV antibiotic regimens (in some cases killing them, after which, at autopsy, no sign whatsoever of Lyme Disease or coinfections is found) or prescribe quack treatments ranging from “magical lasers” (LMAO) to fad diets to herbs which, when scientifically tested, were shown to have no effect on people.

I don’t know Anonymous’ close friend so I certainly can’t speak to that specific situation. Either way I thought there are some things that can be discussed about this comment. On a side note Munchausen Syndrome and hypochondria are very different mental disorders that present very differently. Anonymous should consider looking over the DSM IV on those two issues; I’m sure the school library has a copy.

First, since Lyme was the point of comment, Lyme can be diagnosed clinically. Proceeding with antibiotic treatment with clinical signs is a reasonable course of action. Antibiotics do kill people, but that usually has more to do with an allergic reaction. An autopsy would not test for Lyme, but if the body was donated to a medical school that could be part of some research. There was no citation so nothing more to really comment on. As to the quack, or questionable treatments that certainly isn’t unique to Lyme. 😉 Certainly after many years of MVT I’m still having problems!

The bigger issue is the invisible nature of many problems. This invisibility issue affects many diseases; though MS and Lyme are noteworthy here. Anonymous’ comment about Munchausen Syndrome should hit home to many MS’ers who’ve heard the “but you look so good.” Taking a look again at the NMSS site: You can’t see fatigue, depression, cognitive issues, emotional issues, depression, headaches, burning, pain, numbness, itching, etc. Furthermore, there’s no test confirming you are having most of these problems; it is just your word. It appears that Anonymous is early in her MS journey, and maybe has not encountered the difficulty of symptoms that are unseen. Hopefully she will not have to. Regardless, I hope she did not slap the Munchausen Syndrome label on her friend for problems she could not see.

Mar 192007

As promised here are my impressions of the Lyme. The Lyme does explain some very weird problems that I have had, and the Multiple Sclerosis designation could not explain. I would have gotten infected with Lyme in late 2001 during a visit to New Jersey/Pennsylvania (almost 3 years before my diagnosis with Multiple Sclerosis). I do not remember a tick bite, and I certainly did not get the Erythema migrans (bulls-eye) rash. A few months later, early 2002, I began a couple month period of daily vomiting, extreme fatigue, and fever. I went to the doctor, and tests were run (I’m sure not for Lyme, not that it would have showed anything), but the diagnosis was that I have an infection, and it will just have to run it’s course. That period of illness was 2nd stage Lyme, and I perfectly fit the pattern. Eventually all symptoms went away, and we just assumed that the doctor was correct about the illness passing. Six months later I did have some problems with my feet with both pain in the soles as well as numbness. I blamed it on some new inserts that I was using for my flat feet (even though we were told it would not cause that problem). I then went dormant again for a about a year until “the beginning of Multiple Sclerosis.” Other unique symptoms that cannot be explained well by Multiple Sclerosis (excluding the Bartonella Rash) is that periodically I will have serious joint pain at the knees and ankles. Technically the Lyme does not rule out Multiple Sclerosis (though one could say it is just Multiple Sclerosis with a known cause since I have suffered the brain lesions). I personally suspect it is just the Lyme because the MS has already been very mild, and to have two neurodegenerative diseases that are this mild when combined has to be pretty unlikely.

I cannot say I am super excited about a diagnosis of Lyme. Eriksgirl is more optimistic that I can be cured, and be done with all of this. I was content with the Multiple Sclerosis, and the routine that I had gotten into; both with the treatments and understanding the disease. Now I am thrown into something that I do not understand all that well. Furthermore, I am having a difficult time finding a doctor that is skilled in treating Lyme, especially now that I have long entered chronic/3rd stage Lyme (and all those doses of Solu-medrol only made things worse). On the positive side I am doing really well (especially considering the MS treatments would have been making the Lyme much worse); so I am hopeful that if not cured than I can be almost cured. Treatment will probably involve high-dose IV antibiotics for probably ~4 months. After that I will probably be on lower-dose oral antibiotics for many more months. All that is left is that I need a doctor that knows Lyme (LLMD – Lyme Literate MD), preferably in Dallas, and can begin the treatment I need.

Jan 172007

In response to Gwen’s post my exacerbation pre-dated the holidays. I am just a little slow to get to posting about the exacerbation, etc. (the exacerbation pre-dated Thanksgiving, and just being the 5 of us at home probably doesn’t count as holiday stress – just regular stress ;-). In fact the Solu-Medrol was completed weeks before Christmas. I also agree that many exacerbations just go away by themselves, most within a couple of days. This was not the case with the hands, and was the exact same track that led to the really bad exacerbation (from which there is residual damage). I did not want to risk any additional damage to the hands, and for the record I was recently re-tested and no carpel tunnel (nor any other tunnel problems in the arms) that would be causing residual problems.

Secondarily, does the cause of a significant exacerbation (holiday stress, etc.) matter other than for academic purposes. Regardless of the time of year, and surrounding circumstances I will treat hand problems aggressively. Conversely, pain, itching, balance, fatigue, dizziness/vertigo, numbness elsewhere, etc. will not be treated aggressively – and probably not treated at all (other than the normal routines). I think everyone needs to have thresholds with MS for exacerbations that are tolerable, and exacerbations that are not tolerable that will be treated aggressively. Some people may find walking problems to be more serious than I do, and treat those aggressively.

I’m curious, where do you work that you get 6 weeks of paid vacation (and are they hiring!)? (I get 4 weeks, but that is above average in my experience)

Mar 172006

Well I guess the Multiple Sclerosis vacation is over. I decided to take some time off from the MS and I accomplished what I thought would never happen – days without thinking of the disease. I also took off approximately 3 months from taking injections. Hiding as I may the MS finally caught up with me and it’s back to exacerbation and injection time. Still a mild exacerbation – the numb feet and the girdling around the legs. Well I guess back to the grind.

Jul 142005

As a bit of background my feet remain numb and my legs a little weak. Well in a telephone conversation tonight if my neuro knew about my continued problems. After making some joke about barring him being psychic then no. I said there is no point calling him because I’m not going to take anything (read Solu-Medrol) for this. I emphasized that the side effects are way too bad (and my thinking is that exacerbations are part of MS – save the Solu-Medrol for when you really need it!) I explained my horrific attitude that there is no making me happy and I treat everyone badly. The point of all of this was the next comment which was something to the effect of “doesn’t knowing that it is the Solu-Medrol help you to get over the feeling.” Truly a statement made by someone who has absolutely no clue, and that is good because I wish I didn’t know. I tried to explain it in terms of waking up in the worst possible mood x1000, but alas that doesn’t cover it. The things that MS opens your eyes about.

Jun 272005

The bottom of my feet are getting less numb. On the other hand my balance is getting worse. All I know is that I need to be steering clear of MDMHVonPA and his stroller of death – I have enough balance problems without being hit. Of course I’d be the wrong one to hit since I would fall towards the offender (I’m sure on accident 😉 and end up wiping out 3/4 of his family! 😉

Jun 242005

“Problems that go away by themselves, come back by themselves.” Certainly the mantra of MS it would seem. On the other hand I usually find myself more than happy with symptoms that go away by themselves without Solu-Medrol!

Speaking of which I guess I am in a bit of a holding pattern with the current symptoms. The numbness remains constant in my feet. Not that surprising since when I do get this symptom it tends to hang around for a while. The most memorable occasion was about a year before my diagnosis when I had the numb feet for approx. 2 months. Who would have guessed that it was MS, I thought it was just my new shoe inserts!

Jun 172005

Per the comment asking the question: I would like to put it feels like nothing but alas I can’t be that lucky. Overall it is probably more dysthesia than actual numbness. Very hard to explain but the bottom of my feet feel stiff – like the skin turned into thick leather. Even when not moving anything I can feel the stiffness. Walking on carpet is an extremely unpleasant sensation, even just having my feet on the floor can be quite unpleasant. All of this can be mitigated by wearing shoes. Normally it is not this bad, but I guess the joys of this being the worst episode of foot numbness so far.

Jun 162005

Well in response to MDMHVonPA’s comment I always know which pedal my foot in on. If you are being slammend into the back of your seat then my foot is on the gas pedal. If you are being slammed into the dash then my foot is on the break. Of course I am only partially kidding since with my numb feet I got my “clutch foot” partially on the break pedal and I came to a very rapid stop today! 😉

Jun 142005

Beats the heck out of cold feet! 😉 For whatever reason this remains one of the most common recurring exacerbations for me. Fortunately, other than being a pretty massive annoyance it doesn’t cause any other problems. This time it is worse than it has ever been before, but remains primarily focused at the balls of the feet and the toes. Too bad it doesn’t also numb a little deeper for my flat feet pain – but couldn’t have MS doing something useful! 😉 This has now been going strong for 3 days so I’ve probably got a little while left.