May 262008

Meeting with the LLMD went pretty well. He said he was happy that my vision problems were not optic neuritis, but he did not go into why. I was not much in the mood for there is a better side of this then, but I need to ask at the next appointment.

We started by going over the MRI report, and discussing the visit with the neurologist. He agreed with me holding off on the Rebif, and definitely agreed with no to the steroids. He said that everyone who has come to him who previously had a MS diagnosis has gotten better. He added that there are definitely some people being treated for MS but have Lyme; but that is not really news.

The majority of the visit focused on adding IV Rocephin to the treatment mix. His ideal for the Rocephin is 2g twice a day for 4 days and then off for three days for six months. I did three months with a PICC line so six months can’t be that much worse. This will be in addition to the Minocin and the Flagyl that I am currently taking.

Since I see a doctor out of state the bigger issue was that I needed to get a local doctor to oversee my home heath, etc. My family practice doctor, the one who initially started running the tests for me, graciously agreed to oversee my local care.

To be continued …

May 092008

Still waiting on my appointment with the LLMD, but while waiting I have the follow-up with the neurologist about the MRI. Surprisingly this was a relatively short visit. At my previous visit he said that he thought there is a lesion in the visual cortex (or something in that area. I didn’t take the best notes) that is causing the blind spots. At the previous visit he drew a picture (which I should share) of where he thought the lesion would be located. At this visit, and based on the radiology report, he said there is definitely a lesion in that area causing the problem. I do not begin to have enough neurology knowledge to understand the radiology report so I will have to take his word. On the other hand it seems somewhat reasonable since there are many other lesions in the brain. After his diagnosis he proceeded to take out a textbook to show where in the brain the lesion is located. The quick brain anatomy lesson was interesting, but even with his explanations the lesson was way over my head. 😉 Strangely, he did not discuss steroids (Solu-Medrol); which saved me from the hassle of telling him no. Overall I would say that this visit was worth the $25 co-pay.

To be continued with the LLMD visit …

May 082008

Since my last MRI was at the hospital, because of my seizure, we went back to the hospital; the idea being that they can compare findings from the last MRI. As a nice bonus their imaging facility was separate from the hospital; which I am sure is to present more of a private imaging center feel. The big difference from where I normally go was that they wouldn’t let me wear my clothes into the MRI. She said that the zipper shavings from my jeans get into the magnet and ruin the images. I’m skeptical and very irritated as I’m changing into a hospital gown and pants. I can also listen to a CD at the private imaging facility, but that’s not an option here.

Reading the radiology report is somewhat depressing with all of the lesions. I try to think that the focus of my Lyme treatment, up until the recent change to Minocin, was focused heavily on the co-infections and not on Lyme. I am doing better, and feel better; why all the lesions? I will be seeing the LLMD soon to see what he thinks about my vision, and now the MRI results.

To be continued …

Apr 282008

The only reason I continue to see my neurologist is because he treats the seizures. The reason I was not looking forward to this visit was because I was going to have to come clean about not treating the “Multiple Sclerosis.” When I suspected Lyme I brought the issue to him first, but he then referred me to an idiot infectious disease doctor. Because I did not see his doctor, and kept him out of the loop, he knows nothing about my Lyme diagnosis and treatment. Up until now he has incorrectly assumed that I have continued to take Rebif to treat my MS. The neurologist made it clear from the beginning that Lyme was outside the scope of his knowledge; keeping him in the loop would have turned into a unnecessary (narrowly avoiding an expletive) nag fest about the Rebif (it did digress somewhat to that point later in this visit). I brought Eriksgirl along to help keep up the fight. (Normally a visit is a quick follow-up and nothing of substance is discussed; no real need for Eriksgirl to be there and taking up her valuable time.)

We get the neuro brought up to speed that I am getting treated for Lyme, etc; leaving off the part that he referred us to an idiot. At first he wanted to move me to Tysabri because I am apparently doing so poorly on Rebif. At this point I came clean about not taking Rebif, which he could not handle; even with a Lyme diagnosis that is being actively treated. He then went on to add that because it is a vision problem he wanted to treat it aggressively and prescribe steroids (Solu-Medrol); though surprisingly not at this appointment. Of course I would not take steroids because they would only make things worse with Lyme due to immune suppression. Since he did not want to prescribe them now, but wait until the next appointment, that at least saved another argument. While he did fax in a prescription for Rebif it was a concession to avoid fighting. Also, they sent the prescription to MS Life Lines which was the wrong place to send it at this point; so that pretty much ended that issue pretty easily. I have an appointment coming up soon, and Rebif will probably come up. I will tell him I am pursing another path at this point, but that is for another upcoming post.

What I was interested in was idiopathic intracranial hypertension as a potential cause for my blind spots. Eriksgirl had already suspected I had higher spinal pressure because she had never seen spinal fluid tubes fill up so fast (she used to assist with lumbar punctures) when my fluid was drawn after my first seizure. Of course my spinal pressure should have been taken at that time; even though it wasn’t an ordered test. It is just good practice that if you are in that area you take spinal pressure. High spinal pressure can cause seizures. The neuro said that he didn’t think it was IIH induced blind spots because those blind spots (tend to be?) are around the optic nerve. I’m not fully convinced, but he is not ordering the test. Regardless, if it is Lyme induced IIH than the fix is antibiotics which I am already taking.

The neuro’s theory is a lesion in the brain causing the problem. Maybe. MRI time. At least it will be nice to see how the grey matter is doing.

Apr 262008

Eriksgirl got me into an ophthalmologist really quickly. Yeah Eriksgirl! I had questioned, to myself, the value of going to an ophthalmologist because I thought all I needed was to get was to get my optic nerve checked. The plus side was that I was having problems with blurry vision, in addition to the blind spots, so it seemed like a good idea to get a thorough eye exam. Plus going to the Neurologist for this was going to be a hassle.

The initial eye exam went very well. He checked the optic nerve, retina, macula, etc. Overall the health of my eyes was very good. Interestingly my prescription had changed significantly in one eye which was causing the blurry vision. Why did my prescription change to be more near-sighted after years of being stable? I wonder if it is Lyme related, but that is something to ponder another day.

The interesting test was the visual field perimetry test. This is the test where you look in the dome and click when you see a light. The test generated many pages of output from the various tests, but below is the mapping of the blind spots in each eye. After the test the ophthalmologist’s assessment was that the problem was neurological because there are no problems with my eyes. He was going to refer me to a neurologist (maybe thinking I didn’t want to see the one treating my seizures, or maybe he missed that I already had one) but we just got a copy of the records and had him fax a copy to my existing neurologist. I also get to anticipate the joy of coming clean on some issues with my neurologist (in a future post), but for now just more waiting.

To be continued …

Apr 252008

on with the rest of the story, though it will take a few posts.

After a visit to the LLMD I got a prescription for Minocin to fight the CWD form of Lyme. With this drug the LLMD had warned about the side-effect of ringing of the ears, and I think one other thing (though apparently not important enough to make it into long-term memory), and to call if these symptoms presented. I looked up the drug on-line and saw Idiopathic intracranial hypertension as a possible complication. I made a mental note of this and let Eriksgirl know. As normal I started the new medication on a weekend; and that day I developed blind spots in my vision. I stopped taking the medication and my vision continued to get worse over the coming days. I called my LLMD fearing a “visual disturbance” from IIH that I had read about before. He said that he had only had one case of Minocin induced IIH and he was highly skeptical of that, but did not elaborate as to why. (Maybe because IIH can exist because of Lyme and co-infections) Either way he said that I needed to get my eyes checked out by an ophthalmologist and start the process there.

In the interim reading is very difficult because pieces of text are missing. Writing is also hard because when I proof read I can miss letters and words in the blind spot. VERY challenging problem. More details, etc. in the next post.