Oct 022014
 

Five things to know first before you start SVT:

  • Don’t Do It! (as If you didn’t already know 😉
  • It hurts like Hell! (worst pain of my life!)
  • There will be other drugs that go with it (hope you’re not allergic to any of them!)
  • Make sure you are near a hospital with the appropriate drugs first
  • If you are going to go this route do not be a pansy get at least 4 or 5 “injections”
  • Did I mention it hurts!

Copperhead Much Bigger than the one that bit Me

I was bitten by a copperhead snake in June. The snake has gotten bigger with each retelling and I am sure I will eventually make it up to Titanoboa portions, but I will try to give one last accurate attempt. First, the picture here is much bigger than the snake that bit me; I just grabbed a picture from wikipedia I did not take a picture of the snake while it was biting, wrestling with ;-), me. I do think that the snake that bit me was a young copperhead, though I did not notice a different color on the tail nor did I take the time to get a ruler, etc.

I went outside to investigate a snake and upon seeing it deemed it ok for throwing over the fence. The snake quickly called out my ability to identify safe snakes by biting five times across both hands. After the first bite it was quickly clear it was a venomous snake because while not immediately a level 10 pain it quickly ramps up to a 10+ pain. It caused some bonus side effects like trouble walking, even though it was all in my hands, and disorientation (could be the pain). So eriksgirl called 911 and the paramedics arrived. The one treating me was apparently about as much as a snake expert as I am as he gave us the “good news” that it had to be a rat snake and not venomous because there are no venomous snakes where we live. He did think I should be checked out at a hospital because it is an animal bite. 🙁 All I wanted was pain medicine and I stil do not know how I did not go in the house and empty the entire bottle of Motrin, I am ambivalent if that was for the better or not more on that below. It seemed like hours, my judgment of time is probably a little off, but eriksgirl eventually got us going to the nearest hospital. Continue reading »

Jul 192014
 

A city girl from Denver learns the source of her chronic suffering…
and discovers that Lyme disease can strike anywhere

By Linda Warner, guest blogger

Let me start by saying that I am an overcomer of many things. I grew up in a very abusive alcoholic home, where my parents struggled to put food on the table. I left my home at 16 to enter an abusive relationship with my daughter’s father. I stayed in the relationship far too long, but knew it was not what God’s plan was for me. I put myself through school, even going on to get an MBA. I ended that relationship. But nothing has been more draining to overcome the Diagnosis of LYME. I know that God has given me the strength and the tools to overcome anything.

I am not sure when I got bitten by a tick. I experienced no bulls eye rash. What I did experience, seemingly from out of the blue, was bone-deep achiness and endless fatigue and anxiety. Psychiatrists diagnosed me with everything from PTSD to BiPolar. As a single parent, marathoner and hard driving, middle-aged sales rep for a major global pharmaceutical company, I told myself this was normal. After all, my work had me in and out of doctors’ waiting rooms all day long — of course I would be prone to picking up whatever the patients were bringing in. Plus, wasn’t this what all “women of a certain age” go through? One fall day in 1989, driving to a sales call, I literally fell asleep at the wheel. I awoke after colliding with a tow truck. While the truck driver was fine, I suffered a back injury and my body ached worse than ever.

The accident really scared me and served as a virtual “wake up” call to get help. Surrounded by doctors at my job, I had easy access to a wealth of professional advice and diagnoses. And everybody pretty much said the same thing: It was all stress and anxiety. Continue reading »

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.

Sep 032007
 

I wrote this a couple of weeks ago and forgot to post it.

I was recently prescribed Azithromycin to treat Bartonella. This time it will be 30 days of 500mg. This treatment jogged my memory that my Bartonella rash disappeared to never return after a routine treatment with Azithromycin (the z-pack; 500mg for 3 days) by my regular doctor. I had wondered if this treatment cured me of the Bartonella. Unfortunately, I think one of the classic symptoms of Bartonella is shin pain, and I started having some once starting Levaquin (see more below). Of course on the negative side is the Canadian Lyme Disease Foundation: “In the co-infected Lyme patient, eradication may be difficult.”ref. regardless, if a significant dent was made with a couple of days worth of treatment I am hopeful that a more concerted treatment with Azithromycin and Levaquin will take care of the problem.

The shin pain from Levaquin is a little cause for concern because I believe that the drug carries a black box warning for permanent tendon damage. And from the label: “Ruptures of the shoulder, hand, Achilles tendon, or other tendons that required surgical repair or resulted in prolonged disability have been reported in patients receiving quinolones, including levofloxacin.” I personally think the shin problem is disease related since I seem to recall it happening before any treatment began. As it turns out the pain disappeared as soon as it came so no worries from the Levaquin and my tendons.

Apr 122007
 

It has been a while since I have updated the list of symptoms that I have been battling with so here are the recent problems:

  • Blurry Vision (more near sighted, and worse in the morning). This has actually plagued me since the last round of Solu-Medrol. I am assuming that the Solu-Medrol immune suppression is what impacted my eyes. Alternatively, it is possible that an elevated 1,25-D (special Vitamin D) is causing the problem; I’ll have to write on that later.
  • Foot Pain (the second of the big two). Fortunately this recently went away. For a while it was just my right foot (peaked at level 6/10 pain), and more of a tendon pain. It briefly went to both feet being pain in the soles (peaked at level 1-2/10 pain), but only lasted a couple of days.
  • Tremor. Has been doing better, but noticed it was a little worse when typing this.
  • Etc. There have been a number of smaller things come and go too.
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 312007
 

Another exacerbation. In addition to the fatigue I have been having some balance issues, some pain in my arm (low level, burning pain; and only from a light touch), and an increase/resurgence of my tremor. On a side note, this type of pain is the most common type of exacerbation that I have, and typically affects the arms or legs. Recently, I also went through a period of sleeping very lightly; which certainly didn’t help the fatigue. And probably related, it seems like I have bounced from one infection to another for a while, and maybe that is why I am in yet another exacerbation. Of course, and for the first time, the antibiotics have given me an horrible case of thrush (and how can we forget the case of my MS was “cured” by getting rid of the Candida). So now on top of not being able to drink caffeine I really need to quit drinking sugary beverages (A&W Root beer) since the Nystatin anti-fungal liquid (for 7 days [and it tastes awful], and hopefully I didn’t just do in my liver with that and Rebif) is having trouble getting it under control; and since I don’t care that much for plain water that means aspartame sweetened Kool-Aid (and that probably isn’t good for the MS either ;-).

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)

May 042006
 

I’ve certainly had a long track record of dizziness, and it has resurfaced lately; especially while at work. Which makes me wonder is the latest episode of dizziness the MS, or is it the fumes from the painting, etc. during the remodeling at work. I’m beginning to suspect the fumes since my days have been going strangely better, and I am secretly hoping the remodeling goes slowly ;-). I guess all the benefits of abusing inhalants (including the loss of my precious gray matter – ignorance is bliss!) without the illegality. 😉

I’ve also had some pain in the balls of my feet (stiffness with pain) without any apparent cause. I originally was leaning towards it being the MS, but the pain was alleviated with Ibuprofen. I’ve never had any luck alleviating Multiple Sclerosis pain with NSAID’s which makes it less likely it is a lesion.

 

Mar 032005
 

I got an email from a nurse wanting to ask some questions for an upcoming seminar. Here is my response that I emailed back. Hopefully I was coherent, I’m just really not in the mood to proof read.


  1. How old were you when you first had symptoms?

26

  • How long between first symptoms and diagnosis?It was about a year because the symptom went into remission, and I just wrote it off.
  • What was first symptom?It was numb feet, which I just wrote off as being part of my flat feet.
  • What symptoms do you now or have experienced? What is the most difficult to personally deal with?I have been in remission for a while. The most difficult exacerbation was the one where I lost almost all control of my hands. This was the exacerbation when I was diagnosed, and it didn’t respond immediately to Solu-Medrol treatment. I was very concerned that it was going to leave me crippled, and unable to work and provide for my family. Here are some of the other symptoms I have experienced:
    • Pain – burning and throbbing. It is usually in my legs or arms, but occasionally I have had the burning on my back Highest pain level was a 5 on the 10 point scale. None of it response to OTC NSAIDS
    • Itching – on my arms
    • Motor Control – this was in my hands and forearms
    • Numbness – hands and feet
    • Acute Dizziness and Vertigo
    • Loss of hearing – this happened half way in on my exacerbation when I was diagnosed. Almost deaf in my left ear, and very diminished ability in my right ear
    • Location Specific Essential Tremor – this has become less severe but is still present
    • Acute fatigue. This has happened a couple of times but not for a couple of months.
    • Depression. I attribute to either a lesion or the Rebif because I am not upset about the MS, and its progression anymore.
  • Do you converse with any other people with MS? What is the main focus with discussions?Yes. Those that communicate via email are typically those that are newly diagnosed, or their families, and have specific questions regarding their symptoms. The major interaction is through the blog where there are discussions regarding my symptoms, news items, or treatments on the horizon. Of course the atmosphere of my blog seems to be more of a support nature and so it is unusual that someone will disagree with me, which is too bad.
  • Describe your feelings with MS? ( This is my most important question, as I want to bring into the science of my presentation the humanistic perspective….beyond the body into the heart and spirit)Mostly the MS has fallen into the background and just part of everyday life. The exacerbations can be frustrating as can be taking the Rebif. I don’t really have an emotional response to MS any longer, I must have gotten my catharsis all out with the really large exacerbation.
  • What would be the most important piece of information you would like me to share at the seminar..There will be upwards to 40 medical professionals- nurses, therapists, social workers, and administrators and I will be inviting some staff from the MS Society.There seem to be two general responses to MS. There are those that take it in, make a few adjustments to their life, and just go on living. The others seem to think it is too much and never seem to cope with having the disease, regardless of the severity of the MS progression.

    I think the worst part of having MS is the unknown. Since the pathology is so individual even within the same type of MS (e.g. relapsing-remitting) that can breed a lot of stress. I think injecting a placebo would be helpful, just for the thought that “something” is being done to help.

  • If there are any other people or sources you know of to help me convey this perspective I would be most grateful. Any blog areas you know of Erik that may be helpful that I could tap into?There are other blogs that are listed on the right side of my blog, all of those people have been diagnosed with MS. You might also want to try the Usenet group alt.support.mult-sclerosis – though it has been a while since I have been there. I’ll also post these answers to my blog (http://blog.thesmithlife.com), maybe someone else will have some additional insight.