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.

Feb 162005
 

Becky asked about Thursday’s injection “How much more painful then normal?” The needles do not hurt, typically, while being inserted. On the other hand when they do it is more like a bad bee sting without the burning. There have been incidents where it hurt a little more because I had my wife inject into a site reaction; not a good idea! Bottom line is that the pain, at worst, in enough to make me wince. Thursday’s initial needle insertion was very much worse than this, and caused tears to well up from the pain. While a little blood came out when my wife removed the needle, not all that uncommon for me, it was not enough to warrant that amount of pain. A needle that small should never be that bad. Something definitely was very, very wrong to have that much pain from just the needle. (I have rarely had tears come from the injection, just not from the needle)

Injection Burning: I got rid of the burning, from the Rebif, when inserting the needle and during the injection by making sure there is no medication in the needle before it is inserted. Frequently, a drop of medication will come out of the needle as it is being uncapped. Leaving it there will guarantee burning. My wife, or me, almost always wipes the needle with an alcohol pad to make sure no medication got on the outside of the needle. I HIGHLY recommend doing the same with Rebif. Now it can burn after the injection because sometimes a little will come out; and this can burn like hades! I sadly have no recommendations for that.

Jun 262004
 

For those who are interested in the status of the exacerbation here we go:

 

  • Tremors: The past couple of days have been really good days for the tremors with virtually none. I did have some this morning after I got up but after noon I haven’t had any.
  • Burning in Legs: Has been virtually non-existent since Monday but there have been a couple of mild episodes. There was some this morning – as with all of these symptoms – which made me unhappy because I thought they were all coming back but then they went away in the afternoon
  • Leg Weakness: Again came back a little bit this morning but went away like the others. Otherwise has been gone at least since Monday.
  • Foot Numbness: Complicated symptom at best. Still don’t know whether to blame the MS or not since I had some bad arch pain which could be consistent with another cause – the joys of flat feet. It is much better than it was at its worst and like everything else is worst in the morning when I wake up. No wonder I’m not a morning person! 😉