New Diagnosis of Lyme Disease

Hello everyone,
After 5 years of trying over 15 meds, the MAV diet, VRT, etc. with zero results I have finally been diagnosed with Lyme Disease. I always questioned my MAV diagnosis and finally have an answer. For any of you that question your diagnosis, please explore other avenues. I think that a lot of medical professionals diagnose MAV without ruling out other causes, which sucks :frowning:

Anyway, just thought I would share my news. Wishing you all the best and speedy recoveries x

Hi DC,

very interesting and also must be relieving for you to know this is causing your symptoms. What does the neurologist who diagnosed you with MAV have to say about this?

I am interested to hear their views. Have you started treatment yet?

Hi!
I have not been to see my neuro-otologist yet. Apparently, oddly enough I am Dr S’s 8th patient with Lyme. He knows about 5, I have been told. I can imagine he will be shocked at the rest of us as well :frowning: I have been thinking about emailing him the results. Not started treatment yet, just found out yesterday. I am happy to know what is causing me all of this suffering, but still in shock at the diagnosis. Had a good long pity party. Trying to find an LLMD here in the UK is a bit tricky. NHS will give me 2 weeks of antibiotics, but that won’t be enough from what I understand.

Was this confirmed by a blood test, and if so, which one? Good luck with your treatment and I hope you feel better soon!!!

Thank you :slight_smile: Yes, I had a test via Igenex in the USA. If you call them they send the test kit out for free, then you pay when you send the bloods back to them. As far as I know they ship anywhere in the world. Thank you so much. Long road, and not one I wanted to be on, but now have to fight. No choice.

Wow I am pleased you finally have a diagnosis after so long struggling. I hope the Lyme meds will mean you will make a full recovery. I know some people in the UK see the LLMD Dr David Owen in Cardiff. I am sure others here will give you some more info. I just wondered if you could summarise your main symptoms over the 5 years you have been ill. Thanks and good luck!! x

dizzychick I was just reading some of your earlier posts, and you mentioned that you had used ear drops with gentamicin in them- and was this the same time your dizziness started? Did you ever ask Dr. S. about this and what did he say? could that be the cause (or contributing to) your dizziness? Did you get testing done to see if you have vestibular damage?

Hi,
I had bouts of dizziness before the Gentamicin. Then 6 months after using it the dizziness was non stop 24/7. Dr S said that if it had been the root, it would have started much sooner. I have had every test known to man. No vestibular loss.

Hi DC,

I’d be really interested to hear what Dr S says about this. Where do you think you could have contracted Lyme?

Good luck to you! I have not questioned my diagnosis too much, but I am in the early stages. I will definitely take note–since I live in the state that gave the name to Lyme Disease… My neighbor’s son had it–it took a couple of years for him to fully recover but he did! He remained active during all of it! Best of luck!

Hi there!!

So glad you have finally got to the end of this, I know it is a long road but hopefully now you will get some relief :smiley:

Just wondered, once you order the blood test kit, do you take the bloods to your local GP? Or do you do a prick test yourself? Thanks very much. Hope you dont mind me asking, but I am keen to get tested, been diagnosed with MAV for 2 years now, with some relief but had a huge bite at the start of all of this from a foreign country - not sure if the two are connected but would like to get it sorted. I have been on SO many antiobiotics throughout this, which have helped. :o

Good luck Dizzychick x

Sorry for the late reply. Had a really bad day yesterday - new symptoms now… can’t wear silver jewelry now for some reason, and chemical sensitivity to soaps, dish liquids, etc … now I feel like I am burning with certain products. Just gets more interesting by the minute :frowning:

Scott, I am not 100% sure where I contracted it to be honest. Could have been in the UK (the South Downs), the Highlands of Scotland, the New Forest, or in the USA. Very hard to say. It seems to be everywhere now :frowning: I will see Dr S in the next few months, but I have actually emailed him my results now, so no doubt he will call or email me back. I will let you all know what he says.

mrslala,
I called Igenex and they sent me the test kit for free, I took it to my GP and they took the blood and I FedEx’d it back the same day. Thank you so much for your kind words. x

swirlgirl,
If you live in CT, then I would keep that in mind. Glad the child recovered :slight_smile:

Sorry for the late reply. Had a really bad day yesterday - new symptoms now… can’t wear silver jewelry now for some reason, and chemical sensitivity to soaps, dish liquids, etc … now I feel like I am burning with certain products. Just gets more interesting by the minute :frowning:

Scott, I am not 100% sure where I contracted it to be honest. Could have been in the UK (the South Downs), the Highlands of Scotland, the New Forest, or in the USA. Very hard to say. It seems to be everywhere now :frowning: I will see Dr S in the next few months, but I have actually emailed him my results now, so no doubt he will call or email me back. I will let you all know what he says.

mrslala,
I called Igenex and they sent me the test kit for free, I took it to my GP and they took the blood and I FedEx’d it back the same day. Thank you so much for your kind words. x

swirlgirl,
If you live in CT, then I would keep that in mind. Glad the child recovered :slight_smile:

Dizzychick - I just wanted to reiterate as you know I am so sorry about diagnosis, yet glad that you got to the bottom of things and can now be appropriately treated. I, myself, don’t suffer from such severe chemical reactions as you do, but through learning about Lyme I have done some research on Multiple Chemical Sensitivity. There is a link between Lyme and MCS; however, I’m sure you understand that link far better than I do with your strong science background. I am in contact with someone with Lyme, who suffers terribly with this. If you ever want, I can give you her contact info. She is very kind. I know, though, with the extreme dizziness this is likely the least of your problems, but still all unnerving.
Good idea filling Dr. S in. I hear that he is a great doctor - brilliant and very kind. I do want to forewarn that I suspect that he might not be that receptive to learning about Lyme at first. When I first brought up Lyme to my husband who you know is a physician, he didn’t even want to read about it, and he obviously wants me well more than anyone. It was not until he was ready to research it that he began to understand, etc. and, well, the rest is history.
best of luck!

MAVLisa,

I want to say from a different perspective, that some in the Lyme world are no more receptive of MAV than you feel MAVers are to the idea of Lyme. I was diagnosed as having Lyme based on my symptomology by a very highly thought of Lyme Dr here in the US ( much discussed like your Dr. S. is for MAV). I took thousands of milligrams of antibiotics per day, suffered from ongoing yeast infections because of it, took bottles of probiotics and drove 200 miles every eight weeks and wound up on a massive dose of anti malarial for a “probable” though unconfirmed case of Babesia due to the chronic “tippy” feelings I described. Meanwhile I was sent to see an ENT who specializes in migraine who recognized the signs of MAV. I was put on topomax and saw some change but at first was told to stay the course on the antibiotics because it was most likely due to those not the anti migraine meds that I was feeling better. For me, the migraine diagnosis made more sense and we switched course…but the decision that I made to do so was not " approved" by my Lyme dr who had little knowledge of, or interest in heAring about the migraine possibility.

I’m hopeful, and even optimistic that your diagnosis is correct given your positive test results…but for those whose test results are continuously sketchy (including those from igenex) who also have a high correlation with migraine, I think it is prudent to consider the alternative diagnosis. Also…as I’ve said before, I don’t understand why one can’t consider the option of treating BOTH migraine and lyme together, as it is HIGHLY correlAtional
For people with Lyme disease to have a lowered trigger threshold for migraine activity.

Good luck to us all regardless of diagnosis!!!

I definitely understand where you are coming from. I respect your views, but I have very strong feelings regarding the diagnosis of MAV to someone with chronic dizziness as well as multi-systemic symptoms. And, I do not believe that finding some symptom relief in a migraine med negates the possibility of infection being underlying. but, like you said, all that matters is that we get better from these horrid symptoms, and I am glad that you have had symptom relief from Topamax. that is the main thing that we feel better.

Dolf- I agree with you- why would someone not treat both migraine AND lyme?

Did you have an actual Lyme test?

missmoss

I had about $4,500 worth of Lyme and co-infection testing. My story is a long and complicated one with a history of deer tick infestation (over 300 deer ticks all over body due to walking through a nest) in 1996ish. I tested “positive” once via a generic Lyme test, but when I was given the Western blot to confirm it was “negative.” This was all before I knew about the lyme controversies and the specifics of what positive and negative meant.

Long LOOOOONG story short, when I began suffering from unexplained nausea, off balanced feelings, dizziness, pupil uneveness and heart arrhythmias (unrelated to migraine or lyme turns out) I brought it up again and had a normal test which was negative. Then I sought the advice of an LLMD. I was tested via IGENEX which came back negative for two tests and inconclusive for a third (don’t remember specifics of what the tests were) and then had a test from some company called Neuroscience which is apparently highly questionable which came back positive–but I had never heard of the test before, and I didn’t understand the science described (as someone with a biological science background I expected to at least be able to follow the logic–I was confused). Anyway–I was sick, tired, and had some questionable results and a doctor who had a treatment plan that had some promise, so I went with it. The rest is generally discussed in the last post.

So, I guess you could say that yes I had positive (and negative, and inconclusive) test results over the course of 8 years!!! And with the controversy and confusion, what is one to do??? In the end, I followed a treatment protocol for a few months looking for any sign of response–read the research, continued my search for a diagnosis that may fit better–found one and a treatment that made more sense given my symptoms and history, and made an informed decision, which is all ANY OF US CAN DO.

I’m still not 100% sure that I’ve never had Lyme disease. I live on the east coast of the US. I deer hunt often, am outdoorsy, have had many assorted tick bites in my life and as I said, I was infested that time (though I took a 2 week prophylactic prescription of antibiotics to try to avoid Lyme infection at the time). Every one of my 5 dogs has tested positive for Lyme. It is possible that Lyme disease was what triggered my initial symptoms–and who knows–maybe I still have something going on. For me though, the treatment was making me sicker–as the antibiotics were causing serious issues with yeast infections that can become systemic and life threatening–and honestly, I decided that I didn’t want to be on those doses of antibiotics anymore.

My Igenex tests kept coming in negative though–and my symtpoms line up so much more closely with migraine–I think that’s my issue–and I’m going that route–as I said–as informed as possible and with the knoweledge that what I’m doing will treat the issues/symptoms that have been my greatest concern(s) for nearly two years now.

Good luck (as I’ve said many times before) to everyone–regardless of the CAUSES of their migraine related disabilities. It is a difficult row to hoe–and one I’m glad to have others to discuss and share stories with as we work through it together!!!

Yours,
D

I have been in touch with several people that were first diagnosed with MAV, later to find out that they have Lyme and in these cases Babesia as well. Once diagnosed with Lyme, they only addressed the Lyme and Babesia and are well now. So in those cases the Lyme and Babesia were directly leading to symptoms. It, though, took treating the correct coinfections for the appropriate amount of time to get well. I like to make the analogy of someone diagnosed with Fibromyalgia later to find out that Lyme was leading to these very real symptoms of pain, would that person continue to treat the fibromyalgia with Lyrica or address the Lyme. I see for ex MAV, CFS, fibromyalgia as symptoms, not diagnoses. These are my thoughts based on researching the connection between infection and such symptoms, but I completely respect those that disagree. Heck, if I found a med that gave me any relief in my rocking I wouldn’t hesitate to take it.

Lisa – who are these people with a misdiagnosis? Can you ask any of them to post their story? I’d like to see a clear history with these people whom I have never come across.

  1. Were they ever migraineurs
  2. How long were they treated for migraine?
  3. How long did they require ABs?
  4. What was the trajectory of becoming well?

The list goes on but it would be useful to have some REAL data on these cases rather than just saying I know X people from god knows where who said they had Lyme, were misdiagnosed and now well again. It’s hearsay and nothing more than anecdote.

Thanks