Lyme disease question

Is there any chance that Lizzie and Lisa could do a list of all their symptoms they have ever had since they got ill -only if you have chance and feel up to it. I just want to see how similar the symptoms are to mine. I don’t have any particular reason to think I have Lyme but I would love to rule it out. Trouble is I can’t afford the £1000 tests so would need to be really sure I might have it before I went down that route.

Is anyone else here now having Lyme tets done?

Thanks xx

Will do, might make for a long and boring read so I’ll attempt the short version…

1998 - Holiday to Cape Cod, Massachusetts, USA (lyme endemic area), remember a bite there and my Mum confirms big swollen area on back of my leg, but no tick seen
1999 - Was at school and suddenly all the glands on one side of my face and neck swelled dramatically (they thought it was an allergic reaction and was rushed to hospital, lymphoma was even suggested too, they wanted to biopsy), lasted 5/6 days. They weren’t painful and I was eventually diagnosed with glandular fever, it was a v v atypical case though as I had no fever or sore throat (have since discovered that lyme patients usually have high EBV blood levels)
2000- Pulling sensation on one side of my face like extreme muscle tension, lasted 6 months, saw neurologist who diagnosed chronic migraine, tried ami, propranolol and limbitrol with no effect
2000 (2/3 months after face pain had resolved) - sudden onset of visual disturbances inclusive of many many floaters, flickering vision, ‘visual snow’ - lasted 6 months approx
initially.

From 2000-2012 - on and off periods of extreme fatigue, panic attacks, always coupled with frontal pressure headaches, pins and needles and buzzing sensations in my hands, feet and shoulder blades, extreme shoulder joint and neck pain, dry stinging eyes, a sense of ‘spaciness’, occasional intense painful headaches, weak feeling limbs and joint pain on and off in my toes and knees.

July 2012 - sudden massive dizzy spell followed by constant 24/7 disequilibrium, panic attacks, derealisation, brain fog, and after 2/3 months all my other symptoms also returned…

I only went for the Lyme tests due to that memory of the bite and the very odd episode of flaring glands shortyly afterwards. I also have had hormonal imbalances, which started in 2000 too and suffer alot of severe acid reflux. Also, every time I have blood tests at the doctors my inflammatory markers are raised (ESR and CRP). I hope you can decide what is best for you Jem. My Igenex results were positive for Igg and Igm antibiodies by both Igenex and New York state (stricter) criteria. I had 5/6 positive bands on each tests (many specific forthe Lyme bacteria). Even so I am unsure what to think…I have such a family history of migraine…any other questions just shout. xx

Thanks for that Lizzie. I can definitely relate to quite a few of those things. The main difference is that I have no memory of a bite and I haven’t been to the USA. I know you can get Lyme in the UK though. It’s hard to know what to do for the best xx

I’m on my phone now but as soon as up to looking at computer - tonight or tomorrow - will write it out

I believe I might have been bitten in 2005 but I will never be 100% sure

2000-2005 - migraines with aura 1x per year at most. no head pain without that yearly migraine with aura

2005-2007 - increasing migraines, and migraines with aura

2006 - swollen glands, fever (not sure if this has any relevance)

2006 and 2007 - extended bouts of interstitial cystitis which I found out is largely correlated to lyme

6 months before 2007 - bouts of feeling run down (a bit flu like) on and off. didn’t interfere with my life. just thought I was run down on and off that year.

June 2007 - This is when my life changed for the next almost 6 years. The dizziness hit. severe 24/7 disequilibrum and extreme fatigue, as well as foggy head (although cognitions were always intact) the disequilbrium came and went a few times until August 2007

Ever since August 2007 I have had 24/7 disequilibrium. things have progressed through the years and I currently have the following:
-Disequilibrium
-now have rocking even when standing, sitting and recently even when lying down
-spinning feeling inside my head, as if head is inside a washing machine. feels like head detached from my body, bobbing around
-visual floaters
-occasional blurry vision
-extreme fatigue and flu like 24/7 now. worse fatigue in AM. never ever refreshed from sleep. wake up feeling as if I was hit by a train, hungover and have the flu
-nausea on and off
-brain zaps especially at night. feels almost like what I would imagine a quick seizure might feel like
-extreme light sensitivity
-constant head pressure even when I do not have a migraine

I have wondered a lot over these past months about why a migraineur would present with MAV-type symptoms when hit with lyme. I have read a lot that explained the following and have seen top lyme doctors who have been treating this for 30+ years who confirmed this: Lyme tends to attack someone’s weakness. for ex, someone with preexisting back problems might present with crippling back pain when they have lyme, just as a migraineur might present with “MAV” type symptoms. I doubt this is always the case but my doctors have explained the above to me way better than I ever could.One of the docs has treated 12,000+ patients and lectures around the world, including China, so I think he has sufficient experience to make this conclusion. The doctors are also heavily published with research articles and books

I thought this was an interesting read. I saw this on a forum today and it made me think of why I might have been misdiagnosed as having MAV and how my migraine history actually worked against me.There is no reason that someone (healthy) with a once annual migraine should all of a sudden present with crippling dizziness and an array of neurological symptoms without something else going on, IMO
“If a patients has a known illness like Diabetes etc. with numbness and tingling what doctor would even think of testing for Lyme… the whole thing is wrong because ticks bite everybody and doesn’t discriminate who they bite… If a patients who has Diabetes gets infected what chance do they have of getting a dx most docs would brush it off as a symptom of diabetes… I know for a fact that people who suffered an accident and trauma of the brain and they have all the Lyme symptoms on the list but will never get a Lyme test because they assume everything was from the accident… This whole thinking on Lyme has got to change and we need better testing and experienced docs like Dr. H with the experience to screen a patient properly and not assume that it’s only from this or that.”

Wow! I haven’t been on the forum in a bit but it seems like Lyme is the real deal and might be the culprit for many of us migrainers. I know I had a slew of autoimmune lab tests and I will check if Lyme was done too. Thank you both for sharing your story. I always thought with lyme you had to have a bite and rash and I never had any of these symptoms. Why is it so expensive to get this testing done and to get the proper work-up? Just wondering as I have been worked up for just about every condition under the sun and nothing was that expensive. My blood work was always covered entirely by insurance as were the MRI’s, CT-scans, vestibular tests, etc. Thanks!!!

It is so complicated. there is lots out there to read. but, I would start by watching the documentary, “under our skin.” it’s free on netflix. can also get on youtube. that’s how I started educating myself. and then I went from there and read a ton. testing is, unfortunately, highly inaccurate. I would suggest testing through igenex but even they have many false negatives. testing is very expensive which is such a shame. think that documentary will explain why. if you look up my original lyme post it explains why testing is so inaccurate

Thank you Lisa. I will do that and also check with my docs to see if I already got the tests done. I don’t understand why none of my doctors has ever suggested this diagnosis. I have probably been to over 30 believe it or not!

— Begin quote from "rockergrl"

Wow! I haven’t been on the forum in a bit but it seems like Lyme is the real deal and might be the culprit for many of us migrainers.

— End quote

Important to keep this in context everyone. While Lisa certainly appears to be dealing with Lyme disease after an exhaustive time (years) trialling numerous migraine medications and living the migraine lifestyle to no avail, it made good sense to look outside the box and be tested for this given Lisa lives in an endemic area of the US.

Of course, work with your specialist but keep in mind that compared to the prevalence of migraine, Lyme disease is not at all in the same ball park in terms of the numbers of people it affects (orders of magnitude) and so don’t jump the gun. I know for some of you this test is upwards of 1,000 pounds.

:slight_smile:

I could believe it. I’ve probably been to 30 or more. doctors are not trained to truly understand lyme or give the most sensitive tests or understand why testing has so many false negatives. if you watch that documentary you will understand more and the reasons why. it was so eye opening and then I researched from there. my husband is a physician and didn’t know about lyme either. we learned so much as we researched these past months. this is a useful research as you begin to learn more. however, is very confusing at the beginning. still is , but it is very useful info lymenet.org/BurrGuide200810.pdf

Scott - true. Migraine is very common, yes. Maybe even bouts of vertigo with migraines can be common, but less so. But chronic mav symptoms with other accompanying neurological symptoms is not common.
I’m having lots trouble on computer. I need to organize my research when feeling better. but thought this summarizes some things well in meantime.
anh-usa.org/lymedisease/

Thank you for typing out your story Lisa, I know it’s hard for you to do so right now. I hope you start to improve really soon x

Hi Lisa,

Thanks for posting your symptoms/history.

Can you pls post a little about the steps you took in getting diagnosed with Lyme pls? How did this come about?

Mm x

Also, does Lyme CAUSE migraine (so you’re working with 2 beasts) or is it purely Lyme rather than Migraine??

Sorry for all the questions… To be totally honest with you, I feel like 100% hypocrite here, but since reading your symptoms Lisa, I have too many question marks concerning Lyme myself. As I have access to an interest free loan through my employer, and private health care, I’m going ahead with private testing.

In case anyone is interested as to what my reasons are. The main markers for me other than the obvious MAV and Lyme symptoms being similar are:

  • The fact that I’ve suffered from daily headaches, flu like symptoms, extreme fatigue, foggy head and completely unrefreshing sleep for approx 10 years prior to the big bang of vertigo.
    Other matching symptoms to Lisa, specifically:
  • swollen lymph glands in the neck for years. Blood tests for lymphoma negative. Docs told to ignore.
  • Cystitis off and on in past 2 years.
  • Also had heart palpitations, reporting them to the doctor since I was 18. (Now 29).

I checked with my Mum this morning that I hadn’t been bitten ever as I couldn’t remember any bites. She said no, except for jelly fish on holiday and a very very bad case of sand fly bites in Kos, Greece when I was 16. I remember it, the hotel doctor wanted to send me to hospital but I refused. I didn’t think anything of this until I started googling this morning and found that perhaps they were sand ‘fleas’ rather than ‘flies’, which can carry Lyme co-infections. This might be coincidental and not the cause, but it would definitely add up in relation to when I started getting the daily headaches and all the other symptoms.

From the little research I have done, it seems that Lyme is a horrendous can of worms to open with so much controversy and disagreement surrounding it even amongst medical professionals, so I feel very sorry for anyone who finds themselves on the Lyme path.

I realise I am incredibly lucky to be in a position of having access to the money and the health care, so I’m going to go ahead with it and go from there. If I didn’t have access to the interest free loan and the private health care, then I probably wouldn’t be going down this route just yet.

MMx

— Begin quote from "Jem"

Is there any chance that Lizzie and Lisa could do a list of all their symptoms they have ever had since they got ill -only if you have chance and feel up to it. I just want to see how similar the symptoms are to mine. I don’t have any particular reason to think I have Lyme but I would love to rule it out. Trouble is I can’t afford the £1000 tests so would need to be really sure I might have it before I went down that route.

Is anyone else here now having Lyme tets done?

Thanks xx

— End quote

Hi Jem, dont get too worried about Lyme. It’s great that these guys have found out the truth behind their problems; but, i am someone with 24/7 disequalibrium and it is the result of a terrible migraine vertigo bout. I’m slowly responding to meds, and you will too i’m sure! I can’t afford these tests either, and i’ve spoken to my GP and to the Lyme association. They have told me that vertigo is NOT a proven symptom of lyme.

— Begin quote from "missmoss83"

Also, does Lyme CAUSE migraine (so you’re working with 2 beasts) or is it purely Lyme rather than Migraine??

Sorry for all the questions… To be totally honest with you, I feel like 100% hypocrite here, but since reading your symptoms Lisa, I have too many question marks concerning Lyme myself. As I have access to an interest free loan through my employer, and private health care, I’m going ahead with private testing.

In case anyone is interested as to what my reasons are. The main markers for me other than the obvious MAV and Lyme symptoms being similar are:

  • The fact that I’ve suffered from daily headaches, flu like symptoms, extreme fatigue, foggy head and completely unrefreshing sleep for approx 10 years prior to the big bang of vertigo.
    Other matching symptoms to Lisa, specifically:
  • swollen lymph glands in the neck for years. Blood tests for lymphoma negative. Docs told to ignore.
  • Cystitis off and on in past 2 years.
  • Also had heart palpitations, reporting them to the doctor since I was 18. (Now 29).

I checked with my Mum this morning that I hadn’t been bitten ever as I couldn’t remember any bites. She said no, except for jelly fish on holiday and a very very bad case of sand fly bites in Kos, Greece when I was 16. I remember it, the hotel doctor wanted to send me to hospital but I refused. I didn’t think anything of this until I started googling this morning and found that perhaps they were sand ‘fleas’ rather than ‘flies’, which can carry Lyme co-infections. This might be coincidental and not the cause, but it would definitely add up in relation to when I started getting the daily headaches and all the other symptoms.

From the little research I have done, it seems that Lyme is a horrendous can of worms to open with so much controversy and disagreement surrounding it even amongst medical professionals, so I feel very sorry for anyone who finds themselves on the Lyme path.

I realise I am incredibly lucky to be in a position of having access to the money and the health care, so I’m going to go ahead with it and go from there. If I didn’t have access to the interest free loan and the private health care, then I probably wouldn’t be going down this route just yet.

MMx

— End quote

Let us know how you get on! it’s good that you are able to get tested, as the outcome will help alot of us here to work things out too!

Really interested to hear how your tests go MM. It does sound like you have reason to suspect Lyme. I think if your tests were positive I would be even more tempted to save for testing! x

Hey WTC - can I just ask which Lyme association told u vertigo isn’t a symptom of Lyme? I’m so surprised at that as so so many peer reviewed articles reference dizziness and disequilibrium as a Lyme symptom…my GP readily admitted he knew next to nothing about Lyme so would be less shocked at it coming from a GP. Eek I am so confused! I was convinced I had migraine until these positive blood tests! Not sure what’s worse!!! Lol. How r u? Xx

MM - sorry for the delay. I am feeling so awful. and, please, do not feel like a hypocrite. I understand where you are coming from. I was there myself. that’s why I wanted to write a couple of posts, as I know new people come on all the time and I didn’t want my Lyme post to be buried on the bottom, as I am afraid it can apply to others.

i think the best way to go about ruling out lyme is seeing a Lyme Literate MEdical Doctor (LLMD) I realize they could be expensive as well as the testing,and as you research more you will understand why. I also realize that not everyone can do these tests and see a LLMD. But, this is the best way.

you can start by ordering Igenex from US, but it’s really best to have a LLMD interpret the results, because I’m sure as you are seeing it’s much more than just looking at test results. I think any good LLMD should have igenex test kits. at least they do in the US.

I spoke to a friend in the UK who is ruling this out for herself, and she did research on lymediseaseaction.org.uk. I believe she said she contact them and they were extremely kind and informative. She then found out that there is a good LLMD doctor in Wales. I believe he is both private and through NHS. I got his contact info should anyone be interested.
Dr. David Owen
02920 486168
enquiries@cardiffdoctor.co.uk
She said she actually spoke to him on the phone for a few minutes and she said that he was “lovely” and “calm.”
I might put this info on a separate post so others can see if they miss this.
I am here for you whatever the diagnosis is.

and, Lyme can most definitely present with various vestibular issues.

MM - you asked how I came upon a diagnosis. LLMD believe that if one even has one positive or indeterminate band on a lyme specific band on the western blot and clinical symptoms it is diagnostic of lyme. some even diagnose based on clinical symptoms alone due to the inaccuracy of the tests; however, for me, I was happy to see some positive bands. as, it’s nice to see some evidence after 6 years of all negative testing. there is no reason to have a SPECIFIC band come up if there was no lyme exposure. so, I came up with a very lyme specific band on igenex (39), as well as another band (41) which was less specific. additionally, in 2008, I had a western blot done and only came up with one nonspecific band (41).however, when I saw a LLMD he informed me that i wasn’t given the entire test result as at that time the CDC only reported certain bands. he contacted the lab that ran the test and he found out that I was actually positive on 93 which is an incredibly specific band. He then gave me an article about band 93 and 41 and how those together are highly indicative of lyme. I cited the article on another post. as you read more, you will see why I wasn’t given that band info. it is so disturbing
this is an interesting read and it is chilling to read about band 31 and 34 on the bottom. it’s a quick read, one page. ilads.org/lyme_disease/about_lyme.html