@Elena thanks for sharing, I immediately started thinking about Lyme, but I live in San Diego and I hardly go outside. I also have done Lyme antibody tests multiple times with different labs and it’s always negative. Is it worth pursuing more advanced testing after those negative antibody tests?
The fact that when I sit down at my computer my symptoms sky rocket makes me think this is some structural issue like ES or a CSF leak, unless Lyme can do that too, I am not sure.
@kline I’m glad you already explored the possibility of Lyme disease. Don’t let your living in an urban environment fool you, you can get tick borne disease from a multitude of insects and even a cat scratch (as nuts as it sounds). As I’ve mentioned PCR tests are notorious for false negative results, I’ve had 2 done through different labs that came back negative.
My family already spent a literal fortune over 4 years on multiple failed treatments so another $1700 that we spent on testing through IgeneX were worth it to me personally. My labs came back positive for Lyme disease, Bartonella and Babesia.
My symptoms change with position too, laying flat better, sitting up at the desk or annywhere else immediately worse, as well as bending down, looking down etc. Headaches, face pain especially in upper jaw, teeth sinus area misdiagnosed as TMJ and many other things. Dizziness, ear ringing, muscle twitching, neuropathic sensations all over. Whole body craziest neurological symptoms. Like you I even had a lumbar puncture to rule out MS. As I mentioned you can read my posts if you want to compare our stories and symptom list.
The thing with Lyme is it can cause absolutely any time of pain (joint, muscle, nerve) anywhere in the body, plus a 100 other symptoms.
Before you spend any money I suggest you join a support group and ask questions there. I’m in one called “Rise above Lyme” on Facebook. Similarly to this forum it’s a very safe place full of knowledgeable and supportive people, the creator is a Lyme survivor herself with 4 years of misdiagnoses and 5 years of treatment.
@Elena could the Lyme cause your nerve pain in your face? If I remember right it didn’t resolve at all with surgery? I’m in the UK so there’s not been much publicity about Lyme here, I don’t know so much about it…
@Jules this is my hypothesis and no it didn’t change with surgery at all. It has calmed down to an extent though after I changed my diet drastically to no gluten, no dairy or processed foods and lower carb intake, plus started taking multiple supplements. Although recent dental work set me back and caused a massive flareup that I’ve been battling for the past week.
Lyme bacteria can penetrate any system of the human (and animal) body including nervous system. One of the classic symptoms at the onset is Bell’s palsy which I had all the signs of except for the drooping, so it wasn’t caught or treated in time and my facial nerve got damaged that’s why I now have a bit of synkenesis (when I blink my left cheek slightly pulls up).
Lyme disease is also notoriously known to mimic autoimmune and inflammatory conditions like Rheumatoid arthritis, Lupus, MS, ALS, Parkinson’s, Fibromyalgia, CFS and many more and huge percentage of people diagnosed with those in fact have Lyme and Co but have no idea about it.
It also presents differently in people, some it causes joint pain, some muscle pain, some nerve pain etc and some nothing at all, some people carry Lyme bacteria in their body in the dormant state with no symptoms until it gets activated by immune suppressing event or doesn’t ever get activated if immune system is strong enough.
In the Facebook support group I’m in there are quite a few people from UK. If you’re interested the name of the group is Rise Above Lyme.
@Elena did you do immunoblot tests or just PCR? I’ve done it twice and both were negative. But either way I did schedule an appointment with a Lyme specialist just in case, so we’ll see where that goes.
By the way does anyone know how to get in contact with Dr Hepworth? I’ve called all the numbers for him listed online and they all say he does not practice with him anymore.
@kline 2 PCR tests that I had done through my primary care provider and through another provider I saw both came back negative. Those are CDC guided tests that are usually covered by insurance but notorious for being false negative.
I did immunoblot test through IgeneX, here’s a link to the panel that I chose:
I chose it because it includes most common coinfections and twice cheaper than their most comprehensive panel which is over $3500. It’s out of pocket and not covered by insurance except for Medicare if I’m not mistaken.
It’s great that you’re seeing a Lyme specialist, just makes sure they are ILADs certified (you can search here Provider Search - ILADS). And don’t go to infectious disease specialists, you will only waste your time. Unfortunately they follow CDC guidelines on diagnosing Lyme and don’t recognize chronic Lyme at all, only acute form from a very recent tick bite.
@Elena I found one from lymedisease.org who said he does recognize chronic lyme. However I am not very optimistic since I already tested negative with the immunoblot IGG twice.
@kline - Dr. Hepworth went into private practice on 8/1/24. Here’s his new contact information:
Dr. Edward Hepworth, Denver Sinus Care/Western Sinus and Skull Base Consultants
3150 E. Third Ave, Ste. 300, Denver, CO 80206
•Office number - (720) 899-9489 (8/1/24 beyond)
•FAX number - (720) 953-5151
email: info@denversinuscare.com
The office is updating their phone lines & weren’t answering calls last week. I don’t know if the phone system is back online or not by now. If you call & get no answer & a msg that the VM is full, send your request by email to the info@ email address. You should get a reply back by tomorrow. Please let us know if you don’t.
Dr. Hepworth does his initial consults via his consulting business - Western Sinus and Skull Base Consultants. His initial office visit is $600 which is not billable to insurance. It includes two appointments - the first with his NP Sarah Reynolds who does the initial assessment & the second w/ Dr. Hepworth himself a day or two later. All visits beyond that will be billed to insurance. The office is working at becoming a provider for a number of insurance companies but this is taking longer than anticipated. Dr. Hepworth was previously part of a group practice so was covered by the insurance companies with whom they’d contracted.
@Isaiah_40_31 I’ve left that number multiple VMs and emailed that address on September 19th still with no reply, could it be a different office he’s at?
He’s only at one office now. I’ve found that calling around 11:30 am (10:30 your time) usually gives me a person & not the VM, but sometimes I have to call 3-4 times in a row. One of our other members emailed the info@denversinuscare.com address last week when she got no phone answer, & got a pretty quick reply. Tomorrow, try calling in that timeframe or later afternoon around 3:30 pm (2:30 your time) & emailing during business hours (8-4 pm mtn time) if you don’t get an answer to your call. Dr. Hepworth’s office can be very difficult to communicate with, so perseverance is needed.
@elena Your post is very interesting to me since I was diagnosed with Lyme disease several years ago. I wonder if there is a connection for me. I have had some treatment for Lyme and have tried various dietary changes at different times. I do know that my IJV was compressed based on my surgery, but I wonder if the Lyme has contributed to some of the symptoms. I had COVID & then started noticing some weird head sensations and symptoms that kept progressing.
@kline I wouldn’t despair if I were you. Even the most accurate testing fails and comes back negative as Lyme bacteria can be very evasive and hide from the immune system especially the more time has passed since the bite. That’s why I mentioned that a lot of experienced practitioners treat based on symptoms without testing as a lot of people simply can’t afford those labs or prefer to spend the money on treatments rather than lab work.
What company did you do Immunoblot through if you don’t mind me asking? Also have you taken the questionnaire? California has quite a few highly recommended LLMDs, if you want I can ask in my group for some names close to you.
@vap to be honest with you I didn’t realize how common and widespread Lyme disease is until I started researching and finally basically diagnosed myself.
Here’s a free questionnaire you can take that might give you some answers:
https://projectlyme.org/msids-questionnaire/
I also recommend watching a few documentaries: “Under our skin” on YouTube and “The Quiet Epidemic” on Prime, very eye opening and struck a chord with me.
The trickiest part is every patient may present absolutely differently but common thing is all of them experience a lot of bizarre symptoms that are difficult to explain to a healthy person or a traditional western medicine healthcare provider.
Thanks for the info @Elena , & I hope that symptoms improve for you 
@Elena I did the immunoblot through quest and also everlywell home testing. I did take the questionnaire, but never received the results via email.
@kline strange, I have done the questionnaire several times including just the other day when I sent you the link and always get results immediately to my email. Have you checked your spam folder to make sure it didn’t go there?
@Elena didn’t work again but I have my appointment soon, so if it is Lyme I am sure we’ll get to the bottom of it.
Also wanted to know if anyone is familar with diagnosing vascular eagles. I’ve gotten a CT angiogram with contrast, and a MRV without contrast. I’ve heard you need a CT venogram with contrast to properly diagnose IJV compression. Should I try to obtain this scan given I show many of the VES symptoms or is my MRV w/o contrast and CT angiogram w/ contrast enough?
@Isaiah_40_31 thanks for this. I finally got scheduled with Dr Hepworth today, I gave up trying to obsess myself about whether its ES or “just tmj” because I am confident he will be able to figure it out with all of his experience, after all…it seems almost everyone coming in for their initial ES diagnosis thinks they have TMJ, based on what Dr Osborne told me. So I’m sure these doctors are well versed in distinguishing between the two.
@kline, The scans you’ve already had should be sufficient to show whether or not you have IJV compression. I wouldn’t get any others unless Dr. Hepworth refers you for them. My MRV showed right side IJV compression but not left. It was my CTA that showed my left IJV compression.
BTW - I’m really glad you got an appt with Dr. Hepworth & hope it’s not too long of a wait.