Qualified success story, Topamax, Confusion and Lyme

I am posting a qualified success story after nearly four years of dizziness, vertigo and other neurological symptoms. I should perhaps mention now that Scott knows that I am posting here since this is in part a story about Lyme. I start my story in October of 2011, because that’s when I started noticing that I was having periods of dizziness. That’s also when I started to keep track of my symptoms, which included dizziness, vertigo, problems with my balance, headaches with stomach aches, tinnitus, rashes, tingling or burning hands and feet, neck pain, some swelling joints, brain fog, and memory issues.

I saw lots of doctors, was in the ER several times, in the hospital a few times. I was originally treated for MAV last October. I started Topamax and had trouble with the side effects. I very slowly made it to 62.5 mg, which was the most I was ever able to handle. The Topamax helped some with the visual vertigo, but I continued to get worsening symptoms, especially confusion. I knew that my confusion and memory loss were not normal. I would get lost in my neighborhood, I forgot people I knew, I couldn’t make sense of maps, I couldn’t make lists, at one point I had “left neglect” - I partially ignored input from my left side (for instance, I couldn’t read the numbers on the left side of a clock). I was exhausted from trying to think.

As my symptoms worsened, I did another round of testing in April, which included the IGENEX Lyme test. I tested positive and started treatment under an Infectious Disease doctor who specializes in tick-borne disease, not because I was sure I had Lyme, but because no one had any other treatment ideas for me and the doctors I consulted pretty much said “why not?”. I started with oral antibiotics in May and then did daily iv infusions in July and early August. My health is exponentially better now than it has been in at least a year. My head is clear. I feel like I have been given my life back.

I am weaning off of the Topamax, which in retrospect, probably was not a good choice for me since I was prone to confusion, and confusion can be a side effect. I started my Lyme treatment on a dose of 50mg to help with the headache side effects. I am now down to 37.5 and hope to be completely off of Topamax in 6 weeks. It has been easier to titrate down than up.

I realize my journey isn’t over. Recovery is a process. It took almost 4 years to get as sick as I was. If Lyme caused most of my symptoms (or in the case of the headaches, exacerbated them), I have only had one round of treatment and it is not unusual to need more. I have only felt this well for about a month, but on the other hand, I have felt this well for about a month!

I’m not interested in re-telling the details of my story (though will share privately with others who might want to know more about Lyme), nor do I want to stir up any debate. I do, however, sincerely want people who come to the forum to see Lyme disease as one possible cause of their symptoms to be considered and ruled out or rejected.

I have now personally met many people who have Lyme (or other tick-borne illness) whose primary symptoms included confusion, dizziness and migraines. It wasn’t until I saw the discussion at mvertigo that I thought to be tested. I will always be thankful to Scott for setting up the forum, for the vast amount of migraine information here, and for pointing me in the direction of testing for Lyme.

May we all be well!

Mary Lee

it sounded like in previous posts you have made that topamax did make a big difference for you? so then do u think you have mav and lyme? if it was just lyme how would topamax make a difference? glad to hear you are doing well!

Topamax did help with the visual vertigo. I had not had a flat horizon for a long time and on the Topamax, I could reliably orient myself again, which was a big improvement. My local neurologist didn’t feel that it was a good maintenance drug for me though because I was still having a couple of migraines a week and I had so many other symptoms cropping up, so I have been referred to a neurologist in San Francisco for a consultation on what drug to try next. I will see him in a couple of weeks.

I have had migraines at various times in my life, but always just the headache with a stomach ache, never with all these “aura” type symptoms. I think time will tell how much of this is MAV and how much Lyme or even something else.

Hi Mary Lee,

Thanks for posting this and presenting your story. Very glad to hear you have improved too with the antibiotics!

Can I ask you some Qs about this in trying to understand this better and more fully? I’m not at all doubting the Lyme dx but want to make sure there are no unturned stones.

  1. Did you have any history of migraine before dizziness began in Oct 2011? Is there any migraine in your family – mother, father, grandparents etc?
  2. How long have you been on Topamax altogther? Is it possible that Topamax is solely responsible for you feeling well given that these drugs can take many months to fully kick in – finding the right dose is difficult too as you noted.
  3. Is it possible that your Lyme infection has triggered a ramped up migraine state thus producing the VM symptoms?
  4. Did you have some of the more telltale signs of Lyme disease – such as the initial rash (you mention rashes) and joint pain (you mention swelling joints). These two symptoms certainly sound like a dead ringer for Lyme.

If you could keep us up to date on how you go without Topamax, I’d really appreciate it. Here’s hoping you don’t need it at all. :slight_smile:

Thanks again,
Scott

Hi Scott,

  1. Yep, there’s a family history of migraines. My mom has them, I had them even before October 2011, and my children have them. I can’t tolerate any alcohol at the moment. I get a migraine.

  2. I have been on the Topamax for 10 months. I do not believe it is responsible for me feeling well again. Other than the visual vertigo, I continued to worsen on the Topamax. I was much, much sicker in April than I was in when I started the Topamax in October 2013.

  3. I definitely think that Lyme could trigger MAV in someone prone to migraines.

  4. I never noticed the so-called “bulls-eye” rash, my rashes, when they occurred, were fine ones that covered my entire body. My joints never really hurt, they just occasionally swelled, usually in conjunction with a rash. Neither the rashes nor the swollen joints were ever a serious complaint; my major complaints were dizziness, confusion and memory issues.

There are a couple of things worth noting, I think. One of the common misconceptions about Lyme is that you have to have a bulls-eye rash or swollen joints. In fact, many people suffer primarily from neurological issues and fatigue. Also, when we speak of Lyme, it’s often an umbrella term. Many people who have gotten sick from a tick bite may have another tick-borne illness or co-infection (there are many). These illnesses may not present with rashes or joint pain.

Updates as they occur!

great success story. Glad you are doing better and have found the right course of treatment for you :slight_smile:

— Begin quote from "mlnewman"

  1. Yep, there’s a family history of migraines. My mom has them, I had them even before October 2011, and my children have them. I can’t tolerate any alcohol at the moment. I get a migraine.

— End quote

For me this is a big red flag that migraine is playing some sort of role in this. That’s a very strong hereditary link – a key indicator. Point #3 sounds quite plausible. Let’s see how you go once off the Topamax. Yours is a very interesting case but sorry you are the one that is carrying this.

Here’s something that might interest you from a recent conference with regards to rash (2011 Lyme and Tick Borne-Diseases National Conference):

— Begin quote from ____

[size=140]Dr. John Aucott’s talk on “Early Lyme disease” reported from the SLICE prospective cohort and his Maryland studies.[/size]

[size=110]He indicated that 75% of patients with early Lyme disease will have the telltale skin lesion within the first 1-4 weeks of infection that lasts from days to weeks and expands in size. He emphasized that the classic description of a “bull’s eye rash” occurs only 20% of the time – it is not the most common manifestation of the Lyme rash. Rather, a uniformly red or reddish-blue rash, round or oval in shape, with sharply demarcated borders is most common. Most often the rash develops in places such as the knee, groin, or arm pit, occurring at prime tick season, such as the late spring and early summer. The rash is usually accompanied by fever, chills, and muscular pain in the neck and extremities; these rashes are not extremely painful and are not markedly pruritic. Preliminary evaluation of immunological responses to early infection with Borrelia show interesting patterns of cellular immune response. These may eventually shed light on the differing clinical outcomes that are seen during the two year study follow up after initial antibiotic therapy.[/size]

— End quote

Mary Lee- congrats on becoming well. Such an interesting story and very pleased to hear good news!

Scott- you pick Mary Lee up on her point that you do not have to have a bulls eye (or EM) rash to be diagnosed with Lyme. You state a paper which says in fact that 75% of patients do have a rash. However your paper is only talking about early stage Lyme. Mary was symptomatic for at least 4 years. She was dealing with late stage lyme. And in any case, a 75% rate is the same as 1 in 4 not having the rash. That’s quite a lot of people I would say.

This discussion: cid.oxfordjournals.org/content/4 … type=HWCIT

states that “However, although
characteristic, EM is not pathognomonic;
even in areas where EM is known to be
endemic”

Scott–

I was about to post the same quote here. The greatest misconception about Lyme, I think, is that the rash is always a typical bull’s eye rash. It isn’t really. It is most typically a weird rash that has very demarcated edges but the center is not always “clear” and often is not. It actually looks a bit like a burn in some cases–and the most interesting thing to note is that if you have a rash that doesn’t itch or burn and has a very clear edge to it–go to a doctor–or at the least take a good picture of it and make sure it is dated.

The fact that there was joint discomfort and swelling (especially the swelling) is exceptionally important here. While it may not have been the MAJOR complaint, it was there, and it is RARE to not have ANY joint issues and ONLY neurological issues with Lyme (not impossible).

My opinion–Lyme TOTALLY triggers the migraine cascade in susceptible people–but if you start to experience MAV like symptoms AND you have the joint issues and any weird rashes while or after being in a situation that would have put you in high risk of having a tick bite–chances are GOOD you are dealing with a Lyme or tick borne issue. (MAV may well be an issue alongside your problems and may continue well after treatment).

But–if your ONLY symptoms are MAV related and you are an indoorsy person with no or very little history of access to ticks that would carry the Lyme bacteria–if you live in the city, in an apartment and rarely touch grass for instance–then you are very unlikely to have Lyme disease.

Mary Lee–your story is a VERY GOOD ONE and I am SOOOO GLAD you are finding relief!!! Your description of the rashes you experienced, the swollen joints and your nagging issues even while trying to treat with topamax is an EXCELLENT example of the Lyme bacteria causing issues that mimick and/or trigger MAV-like symptoms while also causing other issues that don’t quite fit into the picture. Your story is exactly opposite mine where I was convinced I had Lyme though I did NOT have the rashes or the swollen joints or the neck pain but DID have the vertigo/dizziness and disequilibrium and found almost no relief from the 6-8 months of high dose antibiotic treatments I underwent in an effort to get well. Once I began treatment with Topamax my story took a turn–exactly the opposite story of yours.

A very thoughtful and helpful post!!! Thank you!!

I didn’t say there must be a bullseye rash here. I saw this SLICE study work a while ago now. I posted that abstract to say that yes it appears to be true based on evidence from the SLICE study that most do not have a bullseye rash but rather a non-distinct rash and about a quarter reported no rash at all.

ML reports noticing non distinct rashes early on and thought this would interest her as it could indicate Lyme.

S

:lol:

Ah good. lol. Dazed and confused. :lol:

I did ask my lyme doctor today when I had my follow up if he had patients who had solely neurological issues. He said that it was not uncommon, depending on which tick-borne illness a patient had, for patients to only have neurological issues. Of course, this doesn’t mean just MAV symptoms, most “lyme” patients complain of moderate to severe brain fog and fatigue, even if they don’t have rashes or joint pain.

Mary Lee