May 222016
 
Erythema Migrans on the arm of my son

Erythema Migrans on the arm of my son

We have a stream near our house and my son likes to hike there. He also recently tested out a new tent in our front yard. Apparently, in one of those places he was bitten by a tick. I think one of our neighbors voodoo cursed him because they hated the tent being up badly. 🙂

Upon seeing the rash we “bundled him up” and headed to the doctor for antibiotics. They were more than happy to prescribe them since even the IDSA recommends that course. We left with 3 weeks of twice a day doxycycline. They also ran the ELISA and Western blot tests, both came back negative.

With my son getting Lyme it reconfirmed what I already knew; the lyme labs suck. His should have been a clear positive for either test, and both failed. What chance do you have if you make it to late stage Lyme?

I am pleased to report that my son completed the antibiotics and the rash is long gone. I am very thankful he got the rash. I do not expect him to have any more problems.

Apr 122015
 
Eriksgirls picture of me showing Anisocoria

Eriksgirls picture of me showing Anisocoria

It is not a tumor! 😉

Eriksgirl has uses my eyes as her personal gauge to see if I am near a seizure. Maybe that happened for her after my last seizure where my pupils were very different sizes, like someone with a concussion and this was before I hit the floor.  I told her they were not off by much when she showed me the picture.  She exclaimed they should be equal. 🙂

What I do know is that the Anisocoria (different pupil sizes) is relatively new for me, and not something I have had my whole life. This would make the Anisocoria most likely caused by Lyme, or MS. I think for either of these it would point to optic neuritis but my eyes are checked regularly (not to say that optic neuritis could not be missed). Other than that I have no great ideas other than a tumor, which I am pretty sure it is not that (recent MRI :-). (or I keep getting concussions, might explain my repeating myself so often to the kids)

I guess it will be something to discuss at my next neuro exam. I cannot remember the last time he examined my eyes. Fortunately, my optometrist has a really nice computer/camera that takes a picture of the back of my eye to look for problems. He is not a doctor, but he regularly checks the optic nerve.

Jan 192015
 

The Neuro thinks I need to be on a medication and it should be an Interferon. It should be fairly well established what I think of the Interferon class as a whole. In the office we got off on a slight tangent when Eriksgirl stated that they do not even know how the Interferons work. His response was because you do not know does not mean I do not know. Normally I would agree but on what level is this drug working? Furthermore, I have to come back to my older post that they just do not work.

I guess I should be fair the Neuro is equally OK with Copaxone. Unfortunately I know very little about Copaxone, and I am not really interested in finding out any more. 🙁

Aubagio

The box for Aubagio looks like birth control piils. Maybe as a warning NEVER GET PREGNANT WHILE USING!

Interestingly the Neuro is categorically against all available oral medications. His reasons was not that they are not effective it was that none of them is safe, and this is from a doctor for there is a time and place for Tysabi. He does, and has, prescribe the medication with varied results. I cannot remember all the oral drug names so forgive me. One patient he was treating the oral drug was

causing stomach issues and I think sleep issues. He did not say the drug killed her, but it did not help. Then of course the death with Gilenya, and if I recall correctly that happened on dose #2 after the supervised dose went fine. I believe the drug Aubagio was of special note because it carries a pregnancy Class X for men too. He said he would never prescribe Aubagio to a male and never to a female before menopause.

Long before this visit Eriksgirl wanted us to go on a gluten free diet. She is sure I would feel better. I agreed that if I ate better I am sure I would feel better. Eating better should help regardless of what I am suffering from, MS and or Lyme. She then purchased The Wahls Protocol which at this point I have only flipped though (and it scared me :-). Good news is the Walhs diet is clinically proven to help with MS, but do not ask me how much because I have not read that part. Eriksgirl, who looked at the book more than I have, agreed we should not start there, that was like jumping way into the deep end of the pool (can I swim?) but we should start with the paleo diet instead. I agreed and we have a friend who has had to be on a paleo diet for a while now, former vegetarian, and it fixed her problem, related to carbs I think, and in the minimum she is a good resource. The thought is the paleo is a segway to Wahls. One baby step at a time. 🙂

A couple addendum here. I will try not to post images of what I am eating. I am not on Facebook, but I hear that is a thing. I also told Eriksgirl that if we are going to get a blender for this new diet it cannot be a Vitamix because the blenders have a cult following. I do not want to be in the Vitamix cult. I think a Blendtec, etc. would be more than adequate. I know a blender sounds weird but Eriksgirl has Vitamix friends, I will not join. 😉

Jan 102015
 

I Feel much better than the Neuro says I am

I had an MRI at the last visit and Eriksgirl noted that it was different, my hands bent differently, etc. My neurologist said he could not comment without a MRI to see if therre were changes in the brain causing the change so off I went. When I asked all he could say about that is your MS is progressing. think that was his way of saying I do not have a clue and blame something I have been diagnosed with. The safe non-answer. 🙁

Now we get to the glass-half-empty Neuro vs. glass-half-full (me/Eriksgirl). He was very displeased with there being new lesions in the brain. I was pleased there was not an aneurysm from my kids! 😉 We then proceeded to discuss drugs for a while, he heavily prefers the injections. He then said than I need to get on a drug before a lesion puts me in a wheelchair. Later Eriksgirl said she was thinking he pulled a violation for jumping straight to wheelchair rather than a reasonable progressing disability. That seems fair to me and especially true based on past visits.

We also had a talk about Lyme, which he mostly dismissed. I have tested positive for Lyme so I at least had it at one time. He said he could be wrong and was willing to refer to someone else to look at other causes of my lesions. The person who he was going to refer me to was of course a specialist in MS. Pursuing that seemed a lot like going to a Ford dealership to have them discuss all the makes and models out that could best fit your needs, and then you are little surprised when the best one is a Ford. I had to decline that offer as I had in the past.

I left without picking a drug, big surprise, and I told him I would get back with him.

Nov 202014
 
Borrelia_burgdorferi-cropped

Lyme spirochetes

For those who have been infected with Lyme we all owe a debt of gratitude to Willy Burgdorfer. His discovery of the spirochete in ticks paved the way for a cause of Lyme and for treatments.

I was talking with Eriksgirl and I was unsure if I would want my name to be associated with a bacteria/pathogen as an honer. She said at least it was not ebola and I was thinking at least it is not Lou Gehrig’s disease. 🙁

Aug 132014
 

The Rife machines do come with books that explain which frequency to use for different infections.  My Chiropractor charges a minimal fee for the use of his machine.  He, or is assistant, programs in the frequency # based on what we are focusing on.  We have used in for LYME, all of the co-infections, candida, and even cold symptoms.  It works, to bring the bug load down.  But is not a one time fix.  That is the frustrating part.  You have to go multiple times.  As we know, LYME spirochettes travel and hide.  I wish I could say I am done, but, I will be going this Friday for another treatment.   I hope to spread treatments out to twice monthly soon.  The costs add up and it does take time.  I am still trying to decide if I should save money and have a rife frequency machine  in my home.  But, they run around $3,000 to $4,000.  I can’t do that right now,

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 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.

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.

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.