UPDATE: Lyme Diagnosis after over 5 years of suffering

I wanted to update everyone about my recent diagnosis of Lyme Disease. I was ambivalent about posting, as I got some backlash about trying hormone therapy a few months ago. I completely, though, understood where that backlash was coming from and I didn’t want to engage in a back and forth debate. I am way too sick for that. I also got an outpouring of kind, compassionate, messages, and I appreciated them very much. I hope that when you read my story you can put yourself in the shoes of someone that has been told they have MAV for almost 6 years, and has tried a plethora of migraine preventives to no avail. Trust me, if I was not bedridden or got well on any of these drugs, I wouldn’t be searching for another answer. However, as my life slips away, I had no choice but to search beyond the MAV diagnosis. I am in no way implying that others do not have MAV, but if even one person can relate to my story, writing this will be well worth it.

Firstly, wanted to explain my story. I became ill in 2007. My first symptoms were a sensation of rocking when I walked, severe, unrelenting, exhaustion, and migraines. Through the years these symptoms of rocking and exhaustion have worsened, and I have numerous other symptoms. I went from being a fully-functioning, active, clinical psychologist, to being essentially bedridden. My current symptoms consist of rocking when walking, standing, recently even when sitting down, and lying down. I am unable to walk without the assistance of a walker when I leave the home (which is rare – mostly for doctor’s appts) and must hold on to anything and everything when standing and walking when at home. My exhaustion has worsened and is particularly horrendous in the morning when I awake, feeling as if I was up all night drinking (which, of course, I wasn’t). I also feel extremely flu like and hypersensitive to visual/auditory/tactile stimuli. Other symptoms consist of brain zaps, crippling, spinning feeling inside my head, nausea, occasional blurriness, among other symptoms. I was told for 5+ years that I have MAV. I have trialed probably close to 15 medications. These were not quick trials. I have stuck through numerous drugs to therapeutic doses. Some trials took over a year to complete. Not one drug has helped me in the slightest. Only Nortriptyline and Verapamil had improved my migraines with aura, but no other symptoms were helped.

After trying bioidentical hormone therapy, which unfortunately and not surprisingly didn’t work this past fall, I began to look into Lyme. I do not regret having tried bioidentical hormone therapy as that was the path I needed to take to get what I believe is my true diagnosis. I was told in the early days by one doctor that I have lyme and I should be treated based on a blood test completed. However, I showed those results to neurologist after neurologist who said I did not have lyme, as they were using strict CDC criteria. I began to educate myself, watch the documentary, “Under Your Skin,” and read as much as my sick head would allow me to. I now know that very few see a tick, and a small percentage have a subsequent rash. I lived in one of the most endemic regions for lyme when I got sick, New York. I live in Connecticut now which is no better. But, again, I thought, well I wasn’t in the woods, so I couldn’t have gotten lyme. But, this is not true at all. You do not have to be in the woods. It can even happen in New York City in Central Park. Looking back I wasn’t perfect before the dizziness hit in 2007. I felt flu like on and off, 6 months prior, and had increasing migraines for over 1 year. Prior to that time, I was extremely healthy!

This has been a very eye opening, yet scary past few months. I also found out that lyme testing is largely inaccurate. Lyme testing doesn’t directly test for lyme. It tests for one’s immune response (antibodies) to lyme. So, even early on, testing doesn’t always come up positive, even if someone does have Lyme. Also, as someone is sicker longer, their immune systems become weaker, making it sometimes even harder to have a positive result. In addition, lyme is sneaky and hides in the cells; thus, it is very hard for the body to detect it. There is luckily some more sensitive tests (Igenex, etc) that have been developed, but even with those there are many false negatives. It is quite scary to think of possibly being diagnosed based on clinical symptoms. I know it was for me. I spent a lot of time researching Lyme Literate Medical Doctors, and have been diagnosed with Lyme. I met with a doctor who has been treating lyme patients for over 30 years and advocating for them. I shared all my records with him. In 2008, I was given a lyme test which was sent to Stony Brook Laboratory. I came up with one band, 41. This doctor told me that half of my test results were missing. He contacted Stony Brook, and it was revealed that I was positive on a specific band (93), and he explained to me that this band is highly indicative of lyme disease. He shared with me an article written way before 2008 about this band and why it is indicative of Lyme Disease. Also explains the two bands I have are indicative of lyme. Should anyone be interested in the research the article was written in 1992, and called “THe 93-Kilodalton Protein of Borrelia burgdorferi: an Immunodominant Protoplasmic Cylinder Antigen.” written by Benjamin Luft, et. al.

I am sorry this is long winded. But, wanted to share my story. Again, I am in no way implying that everyone has lyme disease. However, if others have been sick and have tried numerous drugs, such as myself, and nothing has worked, I strongly feel like it’s at least worth looking into. I know this is going to be a long, long, journey for me. I am terrified of the road ahead as lyme treatment is not easy, especially when one is so sick for this long. There is so much to learn. Again, I hope I am not scaring anyone and am not saying that everyone shares my story.

I just hope we all find our answers and get well! We all deserve to live again!


have you been treated yet? what meds are they recommending? good for you to keep searching- i think if one doesnt respond in the slightest to all these meds, then maybe there is something else going on. It certainly is tricky given that there is no good test for lyme OR mav.

Wow, Lisa. Thanks so much for the update. I know nothing about Lyme disease at all but I do know how long and hard you have searched for an answer and to be honest I am more pleased than I can say that you have at last got a diagnosis that ultimately will dictate treatment that will bring you much needed and longed for relief. So for that reason I am delighted for you.

And I wish with all my heart that, despite the long road ahead, you will see astounding results and eventually get your life back. You deserve no less. It would be lovely to hear of your progress.

My very best wishes to you and your family

Brenda x

Wow I am shocked about this. You have been suffering so long. I am happy that you have finally got some answers!! I read this article recently about a similar type of thing happening to someone here in the UK:

dailymail.co.uk/health/artic … years.html

Lisa, did you feel that you were gradually going worse and worse over the 5 years? Who manages your treatment now, is it a neurologist or the Lyme doctor that did your tests? Are you on antibiotics?

Is it possible to have MAV and Lyme together or that Lyme can make MAV worse?

I would like to get tested for Lyme but the process seems very complicated and expensive too so I have put it off. Has anyone in the UK ever mentioned Lyme to Dr Surenthiran?

Good luck with your treatment Lisa. I would love to hear you have made a complete recovery in the future!! xx

Hey there–

I went the Lyme route first, and when the treatment and testing for that all wound up with zilch, I ended up treating MAV and have had positive results here.

Lyme is nasty–and everything you’ve written is right on. And Lyme can mimick migraine, it can CAUSE migraine, and it can cause a bunch of other vague and vicious symptoms that go untreated because of the controversy for years!!!

Congratulations on finding a doctor who will treat you. The Lyme road is NO EASY ONE TO TRAVEL, and the meds and treatments are no laughing matter. It can take months/years to treat and relapses DO HAPPEN.

Be diligent. And good luck…


Hi Lisa,

Wow, this is really something you can work with (I hope as I don’t know the treatment for this) to end this nightmare. Glad you’re no longer being side tracked by the bio identical hormone thing. That wasn’t a back lash BTW, but a reality check and now it looks like you’re onto something that is worth exploring in full.

What’s the next step? What sort of statistics are there on these tests showing false positives? Can that happen? Do you know of others who have shared your symptoms, were treated for Lyme and recovered?

I admire your tenacity in following up all possible avenues to discover an answer to your constant headaches & dizziness. You have missed out on so much in your life & being able to enjoy being with your little boys while they are growing up. I really hope this is a turning point for you and there will be some relief & medications that will give you your life back.

i wish I could thank everyone individually but having the hardest time looking at computer. but, please know how thankful i am for everyone’s incredibly kind comments and hope for a better future for me.

Jem - yes, my initial symptoms have worsened from the beginning and I have additional symptoms as well. I have definitely worsened, but keep in mind I had 2 pregnancies during this which lowered my baseline tremendously. I have since learned that people with lyme do a lot worse with hormonal changes, especially postpartum! Ladies also have exacerbations around the time of their menstrual cycle. the best first step in to find a Lyme Literate Doctor in your area - LLMD. A good LLMD can be hard to find. it takes a lot of research. I am not familiar with LLMD in UK. I learned a lot from the forum lymenet.org, where you can ask about a LLMD in one’s area. there are also many FB groups. I like Lyme Disease Awareness. there is also a closed group called Lymie 24/7 hotline. there are so many groups, but these have been my favorites thus far in terms of info and help. There is a FBgroup “life with a twist of lyme” it is about a woman who has very similar symptoms as myself who is improving on lyme treatment. She did a very aggressive approach. went straight to IV meds. I am starting slowly with oral antibiotics.

Scott- I will firstly answer your initial questions from yesterday - yes, I was exposed to lyme. there is lyme in every continent, I had read, except Antarctica. I believe there is more lyme present in the US,and I happened to have lived and currently live in the most endemic areas in the US for lyme. I was sitting on the grass quite a bit, every Spring and Summer. Like I said you can get lyme anywhere. even central park in the middle of NYC. I don’t have percentages. you can probably find out. I started to do a search but couldn’t continue as felt so sick. but, I’m sure you can easily find percentages. All I can say is testing is highly inaccurate. most docs only do an ELISA which is the most inaccurate of all. I remember reading percentages of false negatives and it is astounding. but, even more sensitive testing (western blot) is highly inaccurate. I found an article about why testing is so inaccurate. this isn’t a research article. but, the reasons concur with the explanations given by my doctors. anapsid.org/lyme/lymeseroneg.html
Lyme can most definitely present as MAV symptoms. it is known as the great mimicker. It can affect ANY part of the body. people can definitely have Vestibular issues with lyme. there is variation in severity as expected. Some people have some vague dizziness, others POTS-type symptoms, others lightheaded, and others with vestibular symptoms that are similar to mine. Lyme can present as MS-type symptoms, Parkinsons - type symptoms, ALS-type symptoms. the list goes on and on and on. it can affect any part of the body. One big overlap I have oftentimes (not always) noticed is the crippling level of fatigue. then, people have their own mix of symptoms. lyme can definitely cause MAV-like symptoms, cause increasing migraines, etc. There is a wealth of knowledge out there if you ever want to research. this is surely not a diagnosis that I wanted. it is going to be a long, long road, but better than going on my 16th MAV drug and not getting well, ever. With correct diagnosis I at least feel like I have a shot at a second chance in life.

Who has an appointment with DR S next? I wonder if we can mention it to him and see what he says

Funny, I just watched the documentary “Under your skin” then saw your post today. It’s really interesting. I am a veterinarian in SE Minnesota. We routinely test for lymes, ehrlichia and anaplasma in dogs. About 1/3 of dogs test positive for antibodies, many have coinfections. Not just hunting dogs but also inside dogs with lower risk of exposure. In endemic areas up to 50% of deer ticks carry lymes. Probably 10-15% of dogs develop fever and polyarthritis which responds to a month of doxycycline. A small percentage of dogs get an immune mediated kidney disease that is lethal and non responsive to antibiotics. Others develop bleeding abnormalities. Erhlichia can cause multi organ failure and severe secondary infections. We don’t see a chronic form of lymes but I am amazed how many owners have had lymes or know someone who has been devastated by lymes. We have several vaccines available that work well and good tests available for dogs. I don’t know why human medicine is so far behind. I had to ask my doctor for a tick panel. Which would be the first thing I would investigate if a dog presented with my symptoms. Right now I am having a really hard time trusting the human medical system. I have been so disappointed how they have handled my illness. I cannot believe how quickly doctors want to right off a problem as being “all in your head” just because they don’t have answers. I was told by a neurologist that it is just stress and there is nothing g more he can do for me. Meanwhile I am in the process of losing my veterinary practice because I am too sick to work. Lisa, I hope you have found a doctor that is willing to go to bat for you and not give up until you are well. That is what I am hoping for :slight_smile: Best of luck and keep us posted on your progress.


LeAnne - I am so sorry for what you’ve been through and the potential loss of your practice. I remember reading your story and relating as a young, professional, myself. (unfortunately, though, I had to leave my position several years ago and it is so very hard). I also recall your diagnosis of fibromyalgia and although definitely don’t need pain for lyme it definitely resonated with me. I feel the same about the medical system. my husband is a neurosurgeon and shares our disappointment. His eyes have been so opened after learning about lyme with me these past months. I wish you well and please keep me posted. If you ever want to locate me on FB I can message you my name. You can see the FB lyme groups that I am members of. I have learned quite a bit from these forums and groups. Take care.

Other Dr. S’s pts are aware of this as well and believe they might mention to him. I know he is so open and understanding, but he might just not know about lyme to know fault of his own. Also some of the most open-minded medical doctors don’t treat chronic lyme because they don’t want to get involved in the politics or face potential ramifications from medical boards or insurance companies. the whole thing is all so sad.

Did you ever test positive for lymes ( I know the tests are not very reliable) and were you ever treated with antibiotics at the beginning of your illness?


With Lyme testing, the normal blood work is often termed “negative” when indeed the test is “positive.” MAVlisa said she was given a test in 2008 that showed a positive Western Blot band for line 41 and 93 and research from the 90’s illustrated pretty clearly that these two bands were definitively diagnostic. However, due to internal medical politics which are VERY messy where LYME is concerned, the CDC definition for “positive” requires at least four bands to be positive for a diagnosis to be deemed positive. REGARDLESS of the band specificity.

I work in the world of science, and have many microbiologists who are close friends–and we live on the east coast of the United States (aka LYME CENTRAL). The veterenary world acknowledges the prolific rates of Lyme disease in the area, and scientists/biologists tend to find the research that has been done and used to make policy choices is FLAWED. However, insurance companies are happy with the current policies, and the researchers who have tilted the scales in the current direction have some serious biases that keep them from seeing the “light.”

It is a VERY long story. . . just as long, complicated and scarey as the MAV story. BOTH are strange, relatively misunderstood, and “hands-off” diagnoses for the average doctor. Thank GOD we have doctors out there who are able and willing to see past politics and text books.

Sadly, but I have to add this, for as difficult as one may think it is to get an MAV diagnosis and treatment, it is MUCH harder to do so for LYME Disease. Since Lyme requires long term antibiotics, doctors who choose to treat Lyme based on symptomology and non CDC approved test results can be targeted for legal action. Therefore, VERY FEW DOCTORS ARE WILLING TO TAKE THE CHANCE.

Since MAV is not treated with antibiotics and the treatment can only affect the individual patient (as opposed to increasing the liklihood of mutated bacterial populations) there is less fervent argument against treating us…

I am actually GLAD that my diagnosis of Lyme didn’t seem to be accurate and that the MAV seems to be the right road. I’ve had a much easier time of getting treatment for the MAV then the LYME–for that I had to travel to a doctor over three hours away. And, (to illustrate that Lyme doctors are NOT quacks who just want your money) she was the one who informed me that the tests were inconclusive and that after a short regimine of abx if there were NO signs of changes in my symptoms then she suspected MAV and would recommend that I see a specialist who managed atypical migraine activity.

Hi dolfnlvr,

How long did your dr. say that you had to be on antibiotics in order to see a change? Or rather, if you didnt see a change in symptoms after a certain time then it probably wasnt lyme- what was this time period?

How have you treated your MAV? Do you have good symptom control? What were your symptoms? I like you feel lucky that I found a good lyme dr.- they should treat based on your symptoms, not your test results, which seem to be almost useless.

Thank you for posting your story.

A friend has also recently been diagnosed with Lyme Disease after a many year search for answers. After hearing her story, I have been wondering in the back on my mind if perhaps I should ask for another test for Lyme, and now I think I will. We travel to Slovenia often, where there is lots of Lyme and my daughter has had Lyme Disease. Fortunately in her case we caught it early; not only did we know that she had been bitten by a tick, but she also got the classic bullseye rash.

I don’t know what the treatment is at this later stage, but I wish you all the best,

Mary Lee


What a crazy development! You must have such mixed feelings after so many years of misery and failed treatments. I have everything crossed for you that you will get the right treatment now and every hope for your health and wellness :slight_smile: . I look forward to reading of your progress.

Vic X

Before anyone may start to freak out about having Lyme Disease, have a look at this site on the prevalence of Lyme Disease in the US – about 0.01%.


Meniere’s is about 0.2% and migraine about 16% in women. To put this into perspective, you’re about 1,600 times more likely to be a migraineur than you are having Lyme Disease. Lisa, given none of the drugs you’ve tried has made much of a dent in this problem, Lyme certainly seems like the next thing to tackle given you live in an endemic area. So now you hit the antibiotics I guess?

‘‘Estimates suggest that between 1,000 and 3,000 cases of Lyme borreliosis occur in the United Kingdom each year’’

The population of the United Kingdom is 62 mil so it’s VERY rare!!