Back to the Neurologist

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 ...

Technorati Tags: Multiple Sclerosis, Lyme, MRI, Lesions, Neurologist, Solu-Medrol

MRI to Check for Visual Lesion

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 ...

Technorati Tags: Multiple Sclerosis, Lyme, MRI, Lesions, Minocin

ErikMSBlog vs. Spam Filter

I have never checked the Spam folder for the erikmsblog account until a couple of days ago. Gmail overall has been better at filtering out the spam and letting through legitimate mail on the other accounts. This is different than Yahoo's policy which seems to let through all of the spam and mark all of the valid emails as spam. When checking the spam folder I did find some good emails; so if you have never gotten a reply from me it is probably because Gmail thought it was spam. If it was Yahoo I would suggest just include the word Viagra because I think that causes it to bypass their filters, but with Gmail I don't know. I'll try to be better about checking the spam folder in the future.

Technorati Tags: Multiple Sclerosis, Lyme, Spam, Email

Dreaded Neurologist Visit

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.

Technorati Tags: Multiple Sclerosis, Lyme, Rebif, Blind Spots, Tysabri, Idiopathic Intracranial Hypertension, Seizure, Solu-Medrol

Ophthalmologist Visit

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 ...





Technorati Tags: Multiple Sclerosis, Lyme, Visual Field, Blind Spots, Perimetry, Ophthalmologist

Blind Spots

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.

Technorati Tags: Multiple Sclerosis, Lyme, Minocin, Blind Spots, Idiopathic intracranial hypertension

CD-57 Up!

Before going on with the posts of the bad I thought it would be better to start with the some good. The doctor's office called the other day to give me my CD-57 results; which were an 85. This is a record high. Before treatment started the CD-57 was at a 46, though it did move up some before. It is another indicator that I am improving.

Technorati Tags: Multiple Sclerosis, Lyme, CD-57

Munchausen Syndrome

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.

Technorati Tags: Multiple Sclerosis, Lyme, Munchausen Syndrome, Hypochondria, Symptoms

Healing MS With Diet

Before starting with me there was a comment about healing MS with diet, which included a link to her website. Certainly "Healing MS" with some diet is nothing new, but I did take a look; though I didn't read everything.

While I applaud Colleen on her success I do not think diet change alone is sufficient to suddenly stop demyelination. I do think that diet, exercise, etc. can play a large role in your health though, regardless of disease, and that can help anyone. Furthermore, while I have not read the book nor the diet I agree that whole foods are much healthier; although much more expensive.

From the site I gathered that the diet revolved around getting less toxins, which is great. Unfortunately, nasty toxins exist everywhere. Car exhaust, cleaners, pesticides, medicines, synthetic soaps, etc. Even if she has gone to all green cleaners, landscaping, etc. which is something I didn't see on her page, you would still pick up toxins. For someone on this diet detox program I would expect to see some kind of sauna therapy to purge the rest of the toxins, but I didn't see that either.

Unfortunately, because of the expense of a whole foods diet this puts this out of the reach of many people. I am guessing that for many people, especially sick people, this plan is way out of their price range.

Finally, I still stand by my former post that L-Form bacteria seem like a reasonable cause for Multiple Sclerosis.

Technorati Tags: Multiple Sclerosis, Lyme, Toxins, Diet

2008

It has been a while since I posted, and I wish it was all because things were going great and there was nothing to write about. I'll blame some on the end of the year busy, but for 2008 there has been some relapse. This time with both vision and fatigue, but I'll write about those in future posts. There has also been some good news, and progress which I will get to later.

Regardless, I am back, and fatigue willing, I will get caught up with my posts!

Technorati Tags: Multiple Sclerosis, Lyme

Yeast 1 Erik 0

My attempt to avoid taking the medication failed, and last night I started Diflucan. Originally, I thought I had made some progress since the yeast had gotten better on my tongue, but Eriksgirl noted it had spread to my cheeks. As I had said before there were other natural things to try, but I am too tired to fight. Lets hope the kidneys can hang in there!

Technorati Tags: Multiple Sclerosis, Lyme, Diflucam, Probiotic, Yeast, Candida

B12 Injection

and yes it really is that red.

The new LLMD prescribed 3000mcg of injectable B12 twice a week to help with the fatigue. I mentioned to him that I had been taking a B100 vitamin. He said that the B12 did not absorb well through the intestines; which I had heard before (but I figured it absorbed some, and it helped, so it was better than nothing, and no one was offing IM B12). Regardless, while I was tired of the fatigue I also was not looking forward to taking a new injection; and the Rebif was at least subcutaneous. An intramuscular injection, in my mind, equated to the tetanus shots that I used to get as a child, which would hurt for a long time. Eventually, I gave myself the injection and a few hours later felt massively better. Better than I have felt in a very long time. The injection also went very well; the first time. Unfortunately, the second time I did the injection it went badly, and I can only assume I did something wrong (at least I hope the tetanus shot pain is not normal). Maybe if I had gotten some B12/IM injection training I would be better (or had been taking Avonex ;-). I did take the second injection in the evening (last night), but today I am once again feeling great, and no nasty side-effects like the Provigil gives me.

Technorati Tags: Multiple Sclerosis, Lyme, B12, Cyanocobalamin, Fatigue, Provigil

How Are You Feeling?

in the most pitiful pathetic tone; insinuating how do I even make it through the day. (Something I am sure far too many readers are aware of) This has long ago leveled off to minimal levels with the MS, but has now resumed with a vengeance with the Lyme. I'm not entirely certain why. I still have the same neurological problems; and, for once, I am getting better. Somehow getting a new diagnoses must mandate an new pity phase. Of course there are two things making this pity phase worse because no one ever knows my full story. At some point the seizures will come up; which will of course mandate a new pity phase. And then they will learn that I use the term Lyme as a loose term for the set of infections I have (Bartonella, Babesia, Lyme/Borrelia); which once again starts the pity all over again. I think I will be long cured before I am treated normally again. Why would anyone this someone would want to be spoken to this way?

Technorati Tags: Multiple Sclerosis, Lyme, Pity

Lhermitte's Sign

Sad and shocked to see a resurgence of Lhermitte's Sign last week. In fact I think it has been a couple years since the last time I had this problem/sensation. Making matters worse I think this was the worst that the Lhermitte's has ever been; at the worst I could barely move my head without sending shocks down my spine. On the plus side I am on the bitter end of it, and currently I have to try very hard to activate the sensation. I guess nothing like an irritating cervical lesion to give you the warm fuzzies about your treatment.

Technorati Tags: Multiple Sclerosis, Lyme, Lhermitte's sign, Lesion

Pharmacy Error

The Flagyl prescription was written strangely noting that it needed to be taken "F, S, S" for Friday, Saturday, and Sunday. The pharmacy ignored the FSS notation that they did not understand instead of calling the doctor for clarification. I got the medication home and noticed that I have one prescription that I take all week two times a day and one prescription that I take all week three times a day. Fortunately, I remembered that Flagyl was only to be taken 3 times a week (and it helped that taking it everyday I only had 12 days worth of pills). Eriksgirl took it back to the pharmacy (the next day) and they (the pharmacist) were shocked that the evening pharmacist did not call for clarification on the FSS notation. On the plus side we got an immediate $10 refund because of their error. Yeah!

This is certainly a fresh reminder that everyone makes mistakes, and that you need to stay on top of everything. Worse case 12 straight days of Flagyl is a "normal" treatment, and the mistake would have been discovered when I called for a refill.

Technorati Tags: Multiple Sclerosis, Lyme, Flagyl

Yeast Overgrowth?!

Eriksgirl noted a few days ago that my tongue looked pretty white. Normally, that should have registered as a yeast problem, but I never even went and looked for myself. When I was at the doctor the other day they did a mouth culture (I did the swabbing; no mouth violating here ;-) to check for yeast; after looking in the mirror later what was the point of the swab. Regardless, I was shocked when she came back and said I had a yeast problem. I have been taking my probiotic (Acidophilus and Bifidus) correctly, and have been on relatively low doses of antibiotics so I thought the chance of a yeast infection was low. I am left to assume so antibiotics are much worse than others. Regardless, I now have a yeast problem.

Progressing on, the doctor's office solution was to take a probiotic (already doing that, and a relatively "high dose" one at that) and to prescribe an anti-fungal (Diflucam). I admit that I know very little about the anti-fungals but I seem to recall hearing that they are hard on your liver (and maybe your kidneys). This is above and beyond the issue of cost (which is an issue) and I am about "pilled-out." What I am doing instead is what worked well in the past. I am opening the probiotic capsule and emptying it in my mouth (it tastes like white flour, so not too bad). The idea is to let the good bacteria take care of the problem (unfortunately, I can't remember where I heard of the suggestion to do this and give credit). The other thought is that the capsule that I was ingesting wasn't really helping because the yeast in my mouth would immediately trickle back down. Combining this treatment with cutting out some sugar (e.g. Sunkist Orange, my new vice) should fix the problem without adding a nasty, expensive drug. Of course, I have a few other tricks before having to take the drug, but I really don't think it will come to that.

Technorati Tags: Multiple Sclerosis, Lyme, Diflucam, Probiotic, Acidophilus, Bifidus, Yeast, Candida

New Doctor

The long pause in posting has been due to waiting to get into a new doctor. Certainly I was irritated over a couple of the recent things that had gone on with the previous doctor, but mostly I wanted someone closer than Pennsylvania. Close is still a relative term since the new doctor is about five hours away. I knew of this doctor before traveling to PA, he came highly recommended, and many in Dallas go to him; the concern, at the time, was if I had a large herx reaction what do we do, and who do we see since the doctor is so far away (as it turns out there has never been a herx even close to that severe).

Being a first visit I treated it more as a meet and greet (see if we liked him, which we did), and did not have my long list of questions. My big concern was that he agree that I had Lyme, etc., which he did (The hassle of having Lyme and the disease being dismissed all the time makes you a little paranoid), and have a good treatment protocol. He liked the previous protocol I had been on, and he is resuming where the treatment had stopped. He also was happy with the progress that I had made it such a short duration. I'm sure I'll have have a litany of questions for the next time, like about the symptoms I am having now; but that can wait a month. There have been changes to the medications, but I will have to post those later since the list is not in front of me, and not that interesting.

Side Note: What I never got around to posting was that I never resumed the Levaquin after David's post (I had only taken one pill as of my post so I wasn't that into taking the drug again). I was heavily leaning that way anyway, and maybe the comment pushed me over the edge. Regardless, the doctor does not have me on the Levaquin for the current round of treatment; wanting to focus of the Lyme and Babesia for now.

Technorati Tags: Multiple Sclerosis, Lyme, LLMD, Levaquin, Babesia, Herx

Glyconutrient Garbage Redux

I detest writing about Glyconutrients, but they seem to keep coming up. Unfortunately, there was a recent comment made here, and my reply right below.

Interesting timing but there was a good comment buried deep in the blog that occurred right after the above drama (here is the link to the comment if the glyco drama interests you): glyconutrients is a made up term. After doing a quick search I think there was a typo in the doctor she recommended. I think she meant Dr. Ray Sahelian, and his site is here: http://www.raysahelian.com. After a quick look it seems like a pretty good herbal site. Thanks to Dr. Megan for her comment and reference.

Technorati Tags: Multiple Sclerosis, Lyme, Glyconutrients, Ambrotose

No Hope?

While Lyme, Bartonella, etc is not easy to treat there is a hope that one day I will be all better. And, I don't think it is unreasonable to think eventually the cure will happen. Certainly, there may be some permanent damage from the lesions, but at least no more progression. One day Eriksgirl asked the Lyme Doctor how to tell the difference between someone who does get better and someone who seems to never progress. He never answered the question, and trailed off on another subject (kinda normal, which is probably why he runs so late; but we don't know if there is an answer to that question). What I find disconcerting is that this doctor has had Lyme for quite a while, and I'm not sure he has made huge progress in his own treatment. Regardless, progress was made for me on the trip to PA, and I remain hopeful that I will be all better some day. Hopefully sooner rather than later. ;-)

Technorati Tags: Multiple Sclerosis, Lyme

Finally, Lyme Doctor Phone Consult

As a little background I spent 3 months in PA being treated for the Lyme, etc; but more on that another day. Regardless, after 9 days of waiting (5 persistently trying, 4 giving up) I finally got a phone consult with the doctor. During the wait I stopped Levaquin because I could not get confirmation from the Lyme doctor that it was safe in light of the seizures (the drama and irritation surrounding the delay are not worth going into).

Moving on, his diagnosis was that the seizures were caused by demyelination (lesions) which was caused by Bartonella (and the Bartonella toxin). Seems reasonable since my neuro thinks the seizures are caused by a lesion too. The Lyme Doctor thinks that within a year the lesions will heal and the EEG will return enough back to normal to no longer need drugs. For now he wants me resuming Levaquin, but on a lower dose (exactly why I wanted a call-back).

He thinks Bartonella (probably limiting to Bartonella with neurological involvement) carries about a 20% incidence of seizures. Of the types of seizures Tonic-Clonic (Grand Mal) are the least common; lucky me. The Lyme Doctor said he has Petit Mal (Absence seizures); which he thinks we saw one day (and we might have). He added that the absence seizures are the most common for Bartonella related seizures. He also said that had I gotten a SPECT scan, like he had wanted, that probably would have shown the abnormalities that lead to the seizures and he would have put me on Depakote (the drug he takes for his seizures) preventively. First, I would probably need something better than a SPECT scan to agree to start taking anti-seizure drugs preventively; maybe with an EEG, but that would probably require the neurologist agreeing too. Secondly, the reason he said he wanted the SPECT scan was to check the blood flow in the brain; which we can assume is impaired and I assumed, probably correctly, that the SPECT scan was going to be used as a tool to track progress. Had he mentioned this reason maybe I would have gotten the SPECT scan; though an EEG would probably have been better and more effective (not that I am suggesting getting an EEG preventively). I personally think the SPECT scan is his scan of choice, and that reviewing my old MRI images would have been more than adequate. Especially since I have had lesions where he suspects the seizure is starting.

On a side note, as we were going over my seizure clinical history today we covered the hospital neurologist. This neurologist was insistent that based on my EEG that I had epilepsy my whole life. He was certain that I had definitely had seizures before, but maybe they were just staring spells. We assured him that was not the case, and there had been no seizures. He did not believe us. At this point he had basically called me and Eriksgirl idiots, and/or liars. One has to think that absence seizures are awkward and obvious as you don't respond, etc.; while you may not think seizure then it would be memorable when asked about them later. With his winning bed-side manner he actually thought that I might come to see him for my seizures after I got out of the hospital. Apparently, we are not as big of idiots as he thought.

Technorati Tags: Multiple Sclerosis, Lyme, Seizure, Primary Generalized, SPECT, EEG, Absence Seizure, MRI, Lesion, Bartonella, Tonic Clonic