Inexplicable

 Lyme, Multiple Sclerosis  No Responses »
Mar 252013
 

I was trying to think of a word that best described MS/Lyme and I think the word is inexplicable. For me, years ago, life was going along normally and then out of nowhere big problems started. I tried to write them off, and some went away. But much like the old adage problems that go away by themself will also come back by themself. So now as much as life is full of inexplicable things I now have the MS/Lyme which is a constant on and off for no reason. It is better, but not gone.

While not new news the weirdest thing, other than getting MS, was when Katja was “upright” again. I like to hear inexplicable stories of things going good for a change.

Neurology and Astrology

 Lyme, Multiple Sclerosis  No Responses »
Nov 202012
 

Back in February I was contacted by someone wanting to discuss my MS condition and when I was born, etc. In my post I noted that Ron the astrologer predicted a flare up, with no personal information from me. Maybe he is psychic too. ;-)

Apparently per this article Ron was onto something. Neurologists now links birth month to your risk for getting MS. Paraphrasing the article if you are a Aries or Taurus you are in trouble, but if you are a Scorpio or Sagittarius you should be fine. No doubt some time soon your neurologist will use Tarot cards for treatment and diagnosis. I eagerly await my reading.

Less scandalously this is just another Vitamin D study and linking it back to pregnancy. I am all for blaming my parents but this is a bit of old news.

Nothing Can Be Normal

 Lyme, Multiple Sclerosis  No Responses »
Nov 172012
 

For a few days I had pain in the balls of my left foot. I had this type of pain back in 2007 which my LLMD, at th\e time, blamed on gout. No surprise the antibiotics/antimalarials fixed the problem with no diet change. The pain had never come back until recently. Even though it had been years I immediately wondered if it was MS or Lyme. Probably just a weird pain. I am sure most people have weird pains occasionally. Having been diagnosed with a chronic problem I think my natural inclination is to “worry” more over normal pains/things. Maybe that is another complaint I have with the diagnosis. Nothing can be normal again.

Angry Birds Boosts Brain Power

 Lyme, Multiple Sclerosis  2 Responses »
Apr 112012
 

No. Well maybe, but I would not know because I have never played Angry Birds. If it does I am willing to give it a try. Regardless I read this article about computers boosting brain power and thought they were not investigating anything new. Today the computers are helping our brains while beating us at Jeopardy and Chess so tomorrow they will rule the world. Well I welcome my computer overlords.

I was having a conversation recently with someone who was having memory issues and the doctor said it is gone forever you and only maintain. I told him I did not believe that, but you must exercise your brain. No one likes memory problems (unless you could selectively forget ;-) ). You can mitigate memory issues by keeping notes etc. but there is a limit. I do not think the computer training are the solution. I think they used in the computer study the same thing I told him. You must exercise your brain and that is all the computers did. Sitting around all day watching TV or surfing the Internet is not exercising your brain. Worse than that I think some TV shows and some Internet sites actively destroy your brain. Read good books, play board/card games, etc. There are thousands of fun ways to exercise your brain. Do not blame everything on age or disease. Some memory issues may be the result of watching too much “reality TV”.

Unnecessary Risks in Lyme Treatment

 LLMD, Lyme  1 Response »
Apr 102012
 

As I read this blog post two things struck me. First the drug is Lariam not Larium (it is not a “U” it is an “A”). I usually expect my health care providers to spell the drug names correctly. To proceed and misspell it incorrectly six times in that post is pretty bad. So much for spell check. :-) The bigger issue is that Lariam is a nasty drug with bad side effects. There are much better choices in antimalarials, such as Malarone, for treating those types of infections. Malarone is more expensive but you should not end up in a phych ward with suicidal tendencies. I knew that the military was/is investigating Lariam and the Afgan murders. I will be interested to see how that works out, but in the minimum it should concern you that the military thinks Lariam could drive you to that point.

My concern is that those who are treating persistent Lyme are somewhat “bucking the system” and thus willing to take riskier drugs. I know you want to be better, but be careful. The drug I took and was very concerned about was Levaquin. Levaquin is effectively a black box warning drug; as with all in that class. I was very concerned about permanent damage and I do not think I was getting a good return on my investment in that class of drugs.

As always be informed about what you are taking and ask questions. Lyme doctors are already going to be living on the edge of treatment protocols so if you are seeing one be extra careful. Do not be afraid to ask questions, ask if another drug would work as well, or just say no.

Two Confessions

 Lyme  No Responses »
Mar 262012
 

I while ago I got a link to sign a petition against the IDSA lyme protocols. At the time I did not have the time and eventually it just got forgotten. I think in the end it got forgotten because the IDSA protocols never impacted my treatment. I disagree with them, but you tend to be more passionate about things that personally affect you. I was reading Lymelight’s blog and it reminded me of the forgotten petition so I made haste to complete it before I forgot again. To make up for my late submission I submitted another one for Eriksgirl. My other confession is that I submitted another petition for the astrolgist. I obviously had his email address, but I ended up with his home address when he threatened that he could find my personal info whether I gave it to him or not, and to quit being paranoid. To be on the up and up I did not think he wanted an email subscription of updates so I opted him out of that. Deep down Ron can be proud of signing this petition via proxy. ;-)

Medical Marijuana

 Lyme, Multiple Sclerosis  1 Response »
Mar 242012
 

I have posted a few times before about marijuana. I came across this article the other day, and the example they used was the need for weed for MS tremors. Twice a day!  Before she was trapped at home and now suddenly she is free.  The whole story sounds implausible. Maybe the hit in the evening is because her tremors are keeping her awake? In the end this is exactly why I mostly do not support medical marijuana. There are ample prescription medications available to treat tremors. She is taking marijuana because she wants to take marijuana, and now she is just another pot head. To be fair this could just be another horribly written article that left out lots of information.  In the end I think most people using “medical marijuana” do not need it, and it is an abuse of the system.

As to the linked article I see no problem with their being additional restrictions on those who take highly controlled substances. I spent months not being able to drive after each seizure to prove that I was stable. If she, and the others, are in that bad of shape than they should probably not be driving. Or if they are not that bad choose a normal medication. Or take the bus.

Lyme Treatments

 Lyme  1 Response »
Mar 222012
 

For some reason I never posted my Lyme treatments. Here is the spreadsheet with various comments. The first doctor was a quack. I am shocked he has not seriously hurt someone. The next doctor never seemed to take my care that seriously and left me on inadequate medication for long periods. It peaked with him not knowing one of the drugs he prescribed negatively impacted male fertility. As always I recommend trackng symptoms and medication. For what it is worth here is a quick list:

Artemisinin
Azithromycin
B12 (cyanocobalamin) Injection
Biaxin XL (Clarithromycin)
Cholestyramine
Cipro (Ciprofloxacin)
Diflucan (Fluconazole)
Flagyl (Metronidazole)
IV Cleocin Phosphate/ Clindamycin
IV Levaquin/ Levofloxacin
IV Rocephin
IV Rocephin via MediPort
IV Vancomycin via MediPort (self infusing)
Levaquin/ Levofloxacin
Malarone
Minocin (Minocycline)
Septra DS
Tindamax
Ursodiol (Actigall)

Bladder Dysfunction

 Lyme, Multiple Sclerosis  No Responses »
Mar 202012
 

I write about urinary issues, and then I suddenly get stuck with one. This is an extremely rare problem for me. For me it manifests in one of two ways. This time, and the most common of the two, is urgency when there should not be any urgency. Making it worse the urgency is while I am sleeping, and not during the day. So lately I am getting up two or three times during the course of 6.5 hours of sleep to revisit the bathroom. I suspect this is related to the house being about 10° Fahrenheit warmer. This has happened at similar periods where I was getting to warm. I will either adjust or wait it out.  Of course this type has a name: nocturia.  Maybe I should do a little more investigating on nocturia.

The other bladder issue is that I have had difficulty emptying my bladder (this has only happened a couple of times). When I was having this type it was worse in the morning; probably because I am always warm from sleeping under too many covers. Along those same lines it was also worse when I got hot.

For both types I never took any treatment and eventually the problem went away; usually within about a month or two.

As I just went to the NMMS site it says that bladder dysfunction occurs in 80% of people with MS. Very disappointed I could not be in the 20% that missed that problem.  I try to follow good urinary habits, but I do not know what can be done to help overcome nocturia.  Maybe I will look up solutions.

Sex While Having Multiple Sclerosis

 Lyme, Multiple Sclerosis  1 Response »
Mar 142012
 

Could be a fetish. Does that help?

Moving on I came across two webcasts on “intimacy” while having Multiple Sclerosis. Not that it matters but the order I listened to them was Intimacy and MS: Keeping Your Relationship Strong and then Let’s Talk About Sex. The first one was definitely the better one but overall they both covered the same things. Here are my thoughts.

These webcasts can really apply to any disorder and really just apply to sex in general. There are certainly some things specific to MS, but one of the takeaways from this was that not everything is MS. Just because you have MS does not mean that is the cause of your problem. I think they gave a perfect example of it is not MS in the second webcast.

The big one, and no surprise, is to communicate with your loved one. If you are having any issues or things that need adjusting than obviously that is something you need to work on together. Is anything more intimate than sex? There seemed to be a recurring theme of impotence and bladder dysfunction in both webcasts. To be fair one person’s bladder dysfunction is Tiger Woods fetish. Bottom line communicate with your loved one your issues and desires so you can work as a team.

The other big thing that I would hope is common sense but was a major theme is take something (e.g. Medication, Sexual Aids/toys) to work with physical problems. So we have already connected with our love one above, but that does not automatically fix the physical issues. If you have erectile dysfunction than take some medicine, do not give up on sex. I liked the example in the webcast where the guy gave up on sex because of the erectile dysfunction without explanation, his wife felt rejected, and it led to an affair. Switching sexes there was a lot of focus on females who have lost a significant amount of sensation and have trouble reaching orgasm. They discussed that with reduced sensation it is nothing personal to the male, but it may take something extra, like a vibrator, to achieve an orgasm. (In the webcast the recommendation was for a high power vibrator if you are having decreased sensation. If this is really your first vibrator do you really need to start out with D cells or AC power? ;-)

I need to sidetrack for a moment. In the webcast the doctor was bemoaning that all the sex drugs are for men (Viagra, Cialis, etc.) and that there is no Viagra for women. I am curious what Viagra for women would accomplish. For men it overcomes a physical problem. What physical problem do women want solved? Vaginal dryness is something a lot of women suffer after menopause, as well as other times, and there are lotions for that. If it is libido men battle that too and have to take hormones. I can’t see women wanting to take a pill for increased vaginal blood flow, but Viagra may help with that. What would female Viagra accomplish?

It always seems like it is the male that is the example of doing something wrong. No exception this time. A male said he had no problem getting an erection while masturbating, but had trouble when having sex with his wife. This is a perfect example of MS is not causing your problems. On the other hand, excuse the pun, he has some serious sexual problems since he would rather have sex with his hand. This is actually not that uncommon of a problem and they are seeing an increasing number of college age men with the same problem. Too much porn. So I would lay money he is addicted to his hand and photo shopped images of women. If you are addicted to a lie reality is a lot less fun. I am looking at the hand there and it is not doing much for me; probably not helping is that it is not my hand, and I am not left handed. :-) Good ‘ol Rosey; always available and always faithful. :-)

Bottom line two things to take away. First and foremost communicate with your loved one about everything and definitely about sex and your desires and issues. Secondly, if there are problems look for the tools that will help with that specific issue. Finally it does not matter whether MS is causing the impotence, bladder dysfunction, or lack of vaginal sensitivity just get the tools you need to help with the situation.

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