Healthy 34yo having sudden issues. Doctors clueless.

I will try to keep this as brief as possible, but I've been battling a mysterious illness that doctors are clueless about and have recommended that I turn to Mayo Clinic. Before I do that, I would like to post my story to the community in hopes of some helpful ideas/tips.

I am 34 year old Engineer with no previous health problems, surgeries, etc. about 14 months ago, I started experiencing many nerve related symptoms. No recent fevers, colds, insect bites, etc. Was not on any medications. With a ~1 week onset, my symptoms were (and are): extreme daytime tiredness/fatigue, vestibular issues (motion sensitivity), unrefreshed sleep, tingling/numbness in limbs, scalp, face, muscle spasms, muscles cramps (legs), difficulty walking (stiffness, spacticity, weakness), sleep issues / insomnia, near bouts of fainting, light sensitivity, tinnitus, cold intolerance (my body used to be naturally warmer), cold feet, physical symptoms of panic/anxiety without the emotional. Food sensitivities became another issues - I am now allergic to flax seeds, almonds (other nuts?), and have oral food allergies to things like apples, cucumbers, etc.

Doctors initially thought MS, but that was ruled out by MRI and LP (Lumbar Puncture). I have seen multiple specialties mostly at Kaiser. I have seen about 7 neurologists that say this is not a "neurological disease". No best guess or theory other than SOMETHING is causing issues with my Nervous System. Doctors tried high dose prednisone but that had no positive effect, may have even made things worse. I am currently on CYMBALTA 40mg daily which IS helping with some of my fatigue issues, leg weakness/spacticity, and vestibular issues. I tried going down to 20mg a while back, and issues became worse. I am hesitant to increase the dose without first getting a root cause of my issues.

For my sleep issues, I have tried 2.5-5mg ambien and 0.5mg Ativan which helps some. Melatonin is hit or miss. Tried many other herbal / natural things as well without success.

Tests Performed
------------------
2 brain MRIs 1 year apart - Negative
2 cervical spine MRIs- Negative
Brain CT scan - Negative
Inner ear CT - Negative
2 Nerve Conduction Studies - Negative
Chest X-Ray - Negative
3 Lyme disease blood tests - Negative
Spinal Tap (LP) - Negative
Overnight sleep study - No remarkable findings
Many,many blood tests over the past year all Negative.

Has anyone else had any of these issues, or a subset? Whatever I have, Cymbalta seems to help but I don't just want a "band-aid" answer. I am looking for an actual diagnosis. I am located in San Diego and prefer to see a specialist in SOCAL. The most notable issues right now are daytime sleepiness / fatigue, insomnia, unrefreshed sleep, motion sensitivity, sensitivity / allergy to certain foods.

I don't think I have Lyme since 3 blood test over the past year were Negative, but my symptoms are similar to Lyme (and MS) which were both ruled out. Any information / follow-up questions are appreciated!

The test I had performed 3 times is this type:
B BURGDORFERI AB, EIA

I know 2 of the values were 50 and 102.

Does this help?

heat123 for what its worth i had 3 Western Blot tests done in the span of 4 months and they all came back negative. i sent my blood to Igenex labs in California and had the lyme + co-infections full panel done and it came back positive for Lyme and Babesia.

Besides that your symptoms have a lot in common with Lyme and some of the co-infections. Couple that with the fact no one can find what's wrong with you for months is another strong indication you're dealing with bugs. Note I searched for 6 months and followed the same nonsensical path you did before finally getting a diagnosis with an MD.

One good way to tell if you have one of these bugs is to take a common antibiotic protocol and if you feel like crap from it that's a good indication since your body is reacting to it.

I tested negative at LabCorp for lyme on my first test.

Doctor then wanted to send me to everyone else in the whole town for other tests.

I found an LLMD and did the Igenex lab test and it came in positive.

But, that really didn't matter because I had a bite, a mark (not a bull's eye), just round mark that lasted for 3 weeks. Then most importantly, I had lyme symptoms. That is the key - lyme symptoms.

Good luck and let us know what you find.

Hi Heat,

Based on what you've said, I think it's a very high likelihood that you have Lyme and some co-infections. Your symptoms and mine are very similar. I would find an LLMD / LLND as soon as possible and get assessed clinically and with a test through IGenex. Until you do that, you will not be able to take Lyme off the table.

I had 3 tests before seeing my LLND and getting tested through IGenex, all of which were negative. I believed I didn't have Lyme either for 18 months and ignored advice to seek out an LLMD from friends and family.

I had seen multiple specialists, including an MS Specialist and Rheumatologist at Stanford for both MS and AI conditions. I wasn't ever diagnosed with anything, but was having periodic follow-up appointments.

When I did see my LLND, she diagnosed me clinically with Lyme and tested me through IGenex, which was positive. IGenex tests for multiple strains of the Lyme bacteria, while other labs do not. And since you know bacteria mutate very quickly, the traditional tests are missing tons of Lyme infections simply because they are not being through enough.

If you make your email available in your profile, I will send you the name a place in SD you can call. I have family down there and just recommended this place to them. Otherwise, you can click my profile and send me an email, to which I'll respond.

In the meantime, my suggestion would be to clean up your diet. I did that before I was diagnosed (and started using essential oils) and by the time I was diagnosed, I was doing so much better. Because 80% of our immune systems are in our guts, diet is key. Check out The Lyme Diet, The Microbiome Diet (this is one I use), or even Wahls Protocol.

Heat: have you noticed a significant improvement in your fatigue due to cymbalta? My dr wanted me to try an antidepressant in the hopes that it would help improve my chronic fatigue. I tried one pill and had the worst panic attack. I stopped the medication and still suffered from the attacks for the next few days. Thankfully things have gotten better but I will definitely not go back to that or any similar med. I know you have to stick with it for a month to see improvements. But the way I felt, there is no way I would be able to.

My symptoms and experience have been very similar. I also have Kaiser. After most of the same test you had plus many more..I did have a positive test for lyme but was then told by Kaiser that it was a false positive and that I had fibro. I have been seeing a naturapath now and have been diagnosed with lyme. Just started treatment yesterday, I also live in an area with low incidence. I am having a difficult time accepting that I have lyme, especially after reading about the years of treatment that people have. I wish you luck! I understand how frustrating it is to not get answers.

Lyme in California is NOT rare. I am in California and I also have Lyme's disease as well as several co-infections. Just last month, there was an article in the San Francisco newspaper talking about the number of ticks infested with Lyme in the Bay Area parks (much more than previously thought). This study was done by Stanford University.

Here is a link to a website that talks about Lyme myths: http://www.bayarealyme.org/about-lyme/myths/

And the 2nd myth on on the list is "MYTH: There is no risk in California."

This is all still new to me since I was just diagnosed at the end of August. And, I just tested positive for a bunch of co-infections a few weeks ago. This forum has been a great source of information for me

Post Edited (kcarlile) : 10/28/2015 9:51:38 PM (GMT-6)

I always heard Lyme doesnt exist in the south.......well they are wrong about that too. I got it in south ga woods!!!! Took 6 months to figure out what was wrong with me. After 7 negative test from quest and lab corp i was refereed to a llmd that did a Igenix test and it was positive. I did test positive for a ebv current infection as well and the virus got into my heart. It was infected and only working at 30%. Im not trying to scare you but it would be smart for you to get a Igenix test to rule lyme out because if it is lyme and your immune system is suppressed you can get other viruses like I did with ebv and cause even more problems!

Welcome to the forum! I'd strongly encourage you to get a proper Lyme test soon, so if you do have it, you could start treatments sooner. The longer you wait, the more the infection can settle in and spread.

A Lyme Literate doctor is your best bet to get an accurate diagnoses. My daughter has been ill most of her life and we just happened to go to an LLMD unknowingly and the first thing he said after seeing my daughter's records was to get tested for Lyme. I didn't know anything about it at the time, so I told him I didn't think it was in the NW, but he said there are many who have it. If my daughter had been diagnosed early on, she would've been living a normal life now instead of missing out on so much of her life.

Keep us posted.

Many of us can't afford to spend that much - and want to use the money for treatment costs.

So, the best one to get is the Lyme Western Blot - IgM and IgG - just over $200. That is the one to choose if you want the best bang for your buck.

Sure, you could spend more tests done if money isn't an issue.

I didn't bother with co infections testing - if money wasn't tight, I might opt for bart and Babs testing (but they are even more inaccurate and unreliable than the Lyme tests)....so my LLND clinically diagnosed me with bartonella.

Oh my!! Heat, you just gave me a really good giggle tonight!! Central California is where I was infected as a young child!!! Not only that, California has one of the largest Lyme Disease support groups in the MidWest and the Western US! So don't believe those stories about how Lyme is rare in California. I haven't lived there since 1978 when I was 15 years old. Lyme has been in Cali for a very long time, they just don't want to admit to it.

I'm very glad to know that you are going to get the Igenex test, but do be aware, even they aren't 100%. You can still have a false negative from them if you have had these infections for long. These tests all rely on a good response from the immune system to make lots of antibodies, but the Lyme bacteria is very good at lowering the immune function so that very few antibodies are made. It's all about survival for the bacteria, so they are good at this.

But, sometimes even though a Western Blot test is said to be negative, it can show Lyme specific bands. If that's the case, then you still have Lyme even if it's interpreted "officially" as negative. The only thing that will make a Lyme specific band turn positive in 1 specific strain of Lyme disease - Borrelia burgdorferi.

There are over 100 strains of Lyme in the US alone and they have these tests designed for only one strain, and the Lyme speicific bands will only react when exposed to specific proteins that are found only on Borrelia burgdorferi bacteria.

Actually, Lyme can be a sudden onset. If Lyme carditis is your first symptom, it can be quite a scare! For the majority of us, it's not a sudden onset, but for a few it can be, as can be other tick-borne diseases.

With that being said though, these types of symptoms generally are ones that are ignored until they reach a point where they can no longer be ignored, which is different levels for all of us.

And, as Gkamom says, co-infection testing is worse than Lyme testing and it's best to just find a good LLMD to evaluate you. You can get a pretty good idea of which ones you are dealing with by reading through detailed symptom lists of the different tick-borne infections. There is a lot of cross over symptoms, so you have to look at the symptoms that define the infection more, or wait until you start treating to see what symptoms aren't resolving.

One thing is for sure, treating these infections requires one keeps an open mind!