I was diagnosed with Lyme Disease

It has been one year since I went to Johns Hopkins and had a vestibular workup. Diagnosis, MAV and atypical migraines. For some reason that just didn’t sit well with me. After reading these forums I felt it would be negligent to not tell you that 9 months later and many doctors later I have my real diagnosis which is Lyme Disease. Yup, I had dizziness and the floor would move up and down like I was on a boat. I also had headaches that would never end. I tried a bunch of meds that never worked.

Well, I just wanted to throw the option of Lyme Disease as a possible option for some of you that are experiencing these types of symptoms. Also if you have any accompanying joint pain, fatigue, brain fog, thyroid disorders, fibromyalgia,adrenal issues, the list goes on. You can check out more Lyme symptoms and information at the site lymedisease.org.

I am currently under treatment for the last 4 months and my headaches are gone, my dizziness is gone, the floor moving under my feet are gone.

Just food for thought. You can email me with any questions. I’d be glad to help.

In health,
Amy Diane

Very interesting, thanks for sharing this.

This is very interesting, I am in the process of sorting my issues out with dizziness. I have had basic BPPV for the last year and half or so, it started out mild and symptoms have gotten progressively worse beyond the basic room spinning. I get some bizarre random Neurological disturbances, which is how my Neurologist( 2 visits) has labeled them. I had the MRI, Ultrasound on Carotid, ENG test, some blood work. According to these test the only thing they have found is a slight above normal blood pressure and the rest of it comes out good.

So many random unexplained things I have had happen since the start of BPPV and through reading in forums like this one and VEDA vestibular.org/ I have narrowed some things down. Like the brain fog, concentration issues, increased anxiety issues. But I find that I have had more issues with Dizziness than what my ENT Dr. says is normal for BPPV , like the headache/migraine and he has suggested I go back to the Neurologist to see about MAV and if this is the cause of my other symptoms and that I may have multiple issues going on.

I read the survival guide and can relate to many of the symptoms, trigger events about physical things causing them, not sure about the food yet as this is new to me. I plan on talking more about MAV and figuring this part out with my Neurologist.

Some of the bizarre Neuro Disturbances as I call them are numbness in the left ring finger up my left arm that comes an goes, numbness in face at ear level down my jaw across my lover lip with a feeling like I am coming back from the dentist and the nova cain is wearing off. I also had weakness in my inn seam area ( sorry for the lack of correct anatomic term). Maybe this stuff is related or not I am not sure yet. Somewhere else on the web I read that someone else was diagnosed with Lyme disease for unexplained neuro issues when they were having issues with dizziness.

Finally I get to the point after the long work up, I live in Mass and we have the deer ticks in our yard area (11 acre) with deer, mice and the cat who roams and brings them in the house. I find them crawling on me, had a few dug into my skin but never shown the classic bull’s eye but I know that not all cases show the rash. I mentioned this issue to my ENT DR. and he says I need too talk with the regular Dr about this. I get muscle pains to certain level in my legs, generalized fatigue, headaches, swollen lymph nodes. I have been wondering and questioning the possibility of this, I have concerns over whether or not I should bring thing up and appear as a WEB Doctor/Hypo who has everything bad. Would basic exams and blood work gives any clues to having Lyme or is it found through specific testing.

Anyone having insight to any of the above is greatly appreciated as trying to narrow down dizziness issues needs a chart, a med degree, and what ever else we can come up with to figure it out. Hopefully my brain fog has not left my writing/spelling in a total incoherent jumbled mess as I find it sometimes causes issues, nothing like trying to sort out issues when this 500 lb gorilla is on you .

There’s a guy named Brad on the Sharp Blue Labyrinthitis forum, look on pages 13-14 theculture.org/rich/sharpblu … 00199.html who had what he thought was labs, but turned out it was Lyme Disease. The regular Lyme Test can apparently come back falsely negative for Lyme. His suggestion was to find a Lyme Literate Md. to help with the diagnosis and treatment. After being on antibiotics for a while, he is at 95%.

Wow this is interesting, my uncle has lymes and my mon keeps telling me to look into this. I’d be very interesting in hearing more about your testing and treatment…

Hi Amy,

I am interested to know what your treatment was for 4 months which got rid of your headaches and dizziness? How was your Lymes diagnosed? Which tests?

Thanks

Christine

Thanks for sharing Amy! I’ve recently been diagnosed with Lyme Disease and my blood tests show a high TSH level. I’ve had constant dizziness/headaches since August 2009 and have went through the, what seems like 100 doctors and 1,000 tests, and two months ago I finally got a real diagnosis. I’m currently on Effexor, Verapamil, Klonopin, Levothyroxine, Doxycycline (for Lyme) and Factive (for Lyme) - can’t wait to get off all of that, I’m not a very good pill taker :? . Since taking the Factive my dizziness has increased but my doctor said it would be like hitting a beehive with a stick at first so I’m hoping for the best.
What was your treatment that worked for you?

Sorry it has taken me so long to get back to checking this thread. I will try to answer your questions and if I miss anything you can PM me.

Lyme Disease has a host of symptoms and, what I never knew, you can have many weird neurological symptoms.

Mark: some of your numbness could certainly be a symptom too. Lyme can cause all kinds of tingling sensations in different parts of your body.

Regarding testing, the ones out there stink. The ELISA test, that most general MD’s give, can come back false negative up to 50% of the time. The Western Blot, which mosts docs will only give if your ELISA came back positive, come back false negative about the same amount as well. So, many people are suffering and don’t know it. All my bloodwork came back negative too. I remember a tick bite, one about 20 years ago and one about 3 years ago. I NEVER had a bullseye rash and NEVER had the tell tale “flu like symptoms”. You can still have Lyme without those benchmarks.

Looking back I can see that I wasn’t at 100% for many years. I was always tired and whenever I brought it up to docs they always chalked it up to stress.

To be correctly diagnosed and treated you need to find a Lyme Literate Doctor (LLMD). The diagnosis is a clinical one NOT just based on lab tests. Sometimes LLMD’s are hard to find but a few resources are www.lymenet.org for referrals in your area.

I also recommend watching the movie “Under Our Skin”. You can watch it at hulu.com for free.

So, if you are diagnosed with Lyme, you can also have co-infections. There are other bacteria and parasites that can be transmitted by ticks other than just those that are identified with Lyme. So you need to treat co-infections too. Most people have co-infections. For more info see lymedisease.org.

Treatment requires a mix of antibiotics either oral or IV depending on your doctor’s assessment of your illness. I am on oral antibiotics and am making progress. Currently I am taking Omnicef, Zithromax for the Lyme and Mepron and, the herb, artimisinin for a co-infection called babesia. I am going into month 5 of treatment. It has been slow but I am seeing progress.

If you are not into pharmaceutical drugs there are lots of natural ways to go with herbs and other modalities to combat Lyme and co-infections. There are even Lyme Literate Naturopaths. I am currently supplementing with chinese herbs that I get from my Lyme Literate Acupuncturist.

Modifying your diet is important too. I am gluten free, dairy free, sugar free, caffeine free, and NO alcohol. I do cheat with the dairy and sugar occasionally. The biggest help was going gluten free. I saw improvement just with that, even before I started meds. That really seemed to reduce the dizziness and headaches. I also had this pressure in my ears, like I was always underwater. That was also quick to go as well.

I hope that helps and I would be happy to answer other questions if you would like to PM me.

Wow, how interesting. Especially since I had Graves Disease (hyperthyroidism) pop up at almost the same time as the MAV. I also have issues with fatigue and overall achiness. Do you have anything specific that connects it to thyroid problems? I’d love to show it to my doctor.

Lyme disease effects all systems, endocrine, nervous system, adrenals, hormones, brain. There are many Lyme patients that have thyroid issues. Hypo and Hyper.

If you google lyme and thyroid you can find lots of info.

My headaches, that had been just two or three a month, snowballed to daily at the same time as I was diagnosed with my thyroid being overactive, it was only just over range so they didnt treat me, but I have had antibodies to the thyroid from that day to this and its over 20 years. My TSH level is always normal, yet a urine test sent abroad showed the T3 and T4 to be well below range, a few years ago. I have been given an ME (CFS) diagnosis along with the MAV, but I believe ME is just what they tell you you have when they cant find out the real problem.

Christine

Christine

Do you have any other symptoms that may lead you to believe you may have Lyme? Is there treatment and doctors in the UK that are treating Lyme?

Many in the US that are labeled with CFS have undiagnosed Lyme when looked into a little further by a LLMD.

Have sent you private message.

Christine

Very interesting.

— Begin quote from “MarkH”

This is very interesting, I am in the process of sorting my issues out with dizziness. I have had basic BPPV for the last year and half or so, it started out mild and symptoms have gotten progressively worse beyond the basic room spinning. I get some bizarre random Neurological disturbances, which is how my Neurologist( 2 visits) has labeled them. I had the MRI, Ultrasound on Carotid, ENG test, some blood work. According to these test the only thing they have found is a slight above normal blood pressure and the rest of it comes out good.

So many random unexplained things I have had happen since the start of BPPV and through reading in forums like this one and VEDA vestibular.org/ I have narrowed some things down. Like the brain fog, concentration issues, increased anxiety issues. But I find that I have had more issues with Dizziness than what my ENT Dr. says is normal for BPPV , like the headache/migraine and he has suggested I go back to the Neurologist to see about MAV and if this is the cause of my other symptoms and that I may have multiple issues going on.

I read the survival guide and can relate to many of the symptoms, trigger events about physical things causing them, not sure about the food yet as this is new to me. I plan on talking more about MAV and figuring this part out with my Neurologist.

Some of the bizarre Neuro Disturbances as I call them are numbness in the left ring finger up my left arm that comes an goes, numbness in face at ear level down my jaw across my lover lip with a feeling like I am coming back from the dentist and the nova cain is wearing off. I also had weakness in my inn seam area ( sorry for the lack of correct anatomic term). Maybe this stuff is related or not I am not sure yet. Somewhere else on the web I read that someone else was diagnosed with Lyme disease for unexplained neuro issues when they were having issues with dizziness.

Finally I get to the point after the long work up, I live in Mass and we have the deer ticks in our yard area (11 acre) with deer, mice and the cat who roams and brings them in the house. I find them crawling on me, had a few dug into my skin but never shown the classic bull’s eye but I know that not all cases show the rash. I mentioned this issue to my ENT DR. and he says I need too talk with the regular Dr about this. I get muscle pains to certain level in my legs, generalized fatigue, headaches, swollen lymph nodes. I have been wondering and questioning the possibility of this, I have concerns over whether or not I should bring thing up and appear as a WEB Doctor/Hypo who has everything bad. Would basic exams and blood work gives any clues to having Lyme or is it found through specific testing.

Anyone having insight to any of the above is greatly appreciated as trying to narrow down dizziness issues needs a chart, a med degree, and what ever else we can come up with to figure it out. Hopefully my brain fog has not left my writing/spelling in a total incoherent jumbled mess as I find it sometimes causes issues, nothing like trying to sort out issues when this 500 lb gorilla is on you .

— End quote

This is a late follow up to this post

Well I had my Primary care test me for Lyme with the ELISA and it came back negative but he referred me off to an Infectious Disease DR. as well, who did both the ELISA and Western Blot. This Infectious Disease Dr. was kind of curious as to why I was here for the visit and I explained that I was trying to rule out causes of Neurological issues, general leg pain in the calf area, Vertigo and that I live in a high risk area with ticks and have had a few attached to me…so he asked if he could run tests for STD’s as well, his explanation is they can cause some strange Neurological issues . So I am open to any possible insight this Dr. has into possible causes and let him draw as much blood as he wants.

The typical wait time goes by like a week or two for a follow up appointment. He walks in and he tells me this is the highlight of his day and that all test came back negative, followed by that most of the time the news he has to deliver to his patients is about something bad.

So I then get into a discussion with him about the controversy issues of diagnostics. He agrees and says the medical community differs on it and that the way LYME can hide in the body and mimic other disease’s and in his opinion the only 100% true test is if they were able to grind your body up and put it under a microscope to exam it. So needless to say the truth/reality of that statement was kind of an eye opener. But what I thought was most interesting about this Dr. he also put out the other hand and said yes you can check out other Dr’s who claim they help treat LYME but go with one eye open.

So for argument sake in “my case” I leaned towards trusting what he was saying but am keeping one eye open in the other direction as well.

Disclaimer
I thought I would share my experience and while this only pertains to me and information I received, it may not be the medical truth because of the controversy.
Please talk with your Dr and only use this as insight into another persons journey.

I looked into this as well - but i just find it frustrating to have yet another possible cause for my condition. I have found that it is best not to question the reasons for my condition but try and manage it the best I can. Sorry for the plug but I have written about it here… dizzytimes.co.uk/2013/02/min … atter.html

I appreciated your blog, Henry. I agree that from time to time, one needs to take a rest from searching for a diagnosis. It is exhausting and anxiety-producing. However, I think one also needs, after a break to return to the fray, to keep one ear and an eye open, because you will never know if something you hear or see will give you pause. Having MAV demands a lot of people: Self-discipline, self-education, patience, hope, and also an open mind. There are so many beliefs that were touted by experts as being the truth that with further research and more precise instruments are being contradicted. For example, fat-free diets were considered important in combating heart disease, but current thinking is shifting to recognizing the valuable role that saturated fats play in the health of the individual. This field of vestibular/migraine disorders is still in its infancy. Many doctors are still going by information they learned in medical school thirty years ago, because they do not have time to keep up with the latest research. We owe it to ourselves and to each other to keep searching and to listen with an open mind to everyone who comes through this forum, unless they are obviously trying to sell a product, whether they are suggesting something scary like Lyme or something more benign like trigger points. You never know who will be helped, if not you then maybe your friend, neighbor, family member, or fellow sufferer. One is free to take in the information presented and then to discard what does not make sense for them personally. I bless those who have had the courage to write about difficult topics like Lyme and wish them all the best and for the rest of us as well!