Comment by jcoby | Hacker News Reader

Comment by jcoby | Hacker News Reader

Lyme disease is no joke. My neighbor's son found out he had Lyme after being mis-diagnosed with (I think) MS. He was losing motor function, one eye started to go blind, and he was chronically tired. He made a full recovery after being diagnosed but that was several years taken from a person in their early 20s.

I believe I had some sort of tick-borne bacterial illness as well. I felt a scratch on my ankle and found a small tick. I didn't think anything about it and threw it in the toilet. A few days later I started losing concentration, almost feeling out of body. I'd find myself not remembering what I was doing or how I got there. I couldn't read. I would stop mid conversation unable to remember what I was saying. After a week I went to the doctor and Lyme came back negative. Another week passed and he gave me an antibiotic and it cleared up in a few days. It may have been psychosomatic but I have never experienced anything like it before or since. The mark on my ankle has taken almost three years to heal.

My girlfriend was recently possibly diagnosed with MS. I say possibly because the doctor isn't confident - he put it at about 75% likely it's MS - but has no other answers to her symptoms which include numbness that started in her feet and eventually went up to her thighs that lasted for ~2 weeks, as well Barber's Chair Syndrome, and Retinal Vasculitis.

All 3 symptoms have since faded away, and the MRI's weren't conclusive enough to say it was MS, so the doctor is at a loss and working to get her set up with more tests.

What's interesting is she found a tick on her about a year ago, but the Lyme results came back negative. It may be MS but the doctor seems to have enough doubt that I've often wondered if it might be Lyme or something else.

There is currently no reliable Lyme test. The most commonly used test has an accuracy and sensitivity of 50 %. Worthless. A tick bite + weird symptoms = very high change it's caused by a tickborne disease.

https://globallymealliance.org/about-lyme/diagnosis/testing/

The CDC says, "When performed and interpreted in accordance with current guidelines, 2-tiered serologic analysis has a sensitivity of ≈70%–100% and a specificity >95% for disseminated Lyme disease." [https://wwwnc.cdc.gov/eid/syn/en/article/22/7/15-1694.htm]

FWIW it's not technically MS until there's been more than one incident, thus "multiple" in the name. The resultant lesions are usually visible on an MRI. Most people who have one incident to not go on to have multiple.

There's no definitive test other than this: multiple incidents of otherwise-unexplained neural compromise, verified by MRI as lesions on the myelin sheath. MS symptoms are readily addresses by steroids, unlike other similar conditions, so that can also be somewhat diagnostic.

So regardless of how good or skilled your doctor is, some uncertainty is inherent in the disease. That makes distinguishing it from other conditions difficult. If any symptoms recur consider seeing a specialist neurologist.

Source: more experience with it than I'd like.

Thanks for the info. These incidents have all been since the tick bite, but none have overlapped (other than the Barbers Chair syndrome and numbness in her legs...one of which kind of set on toward the end of the other). The MRI's saw some lesions, but they didn't seem to be enough for the doctor to be confident. He did consult with another Neurologist in his office who looked at the MRIs and was 100% confident in the diagnosis, but he wasn't willing to go that far.

Living in DC I guess we're fortunate to be so close to NIH because he is having her visit some MS specialist at NIH which will also include access to better/more reliable MRI equipment. It's been an ongoing process to even get enrolled in the study, but we finally have an appointment for next month so we'll see what happens.

She should get re-tested for Lyme and tested at one of the "best" labs (there are disagreements about which labs are most accurate).

The Lyme test only measure antibodies, not bacteria. That means if you get tested too early in the disease process, you might come up negative.

14% of chronic Lyme patients report being initially misdiagnosed with MS and roughly 2% are misdiagnosed with other neurologic diseases, like ALS, Parkinson’s and Multiple systems atrophy.

I think it's worth it to check it out.

https://www.lymedisease.org/lymepolicywonk-lyme-neurologic-m...

Do you remember what you were given? Your description sounds exactly like something I've been dealing with on and off for a few years now.

I'm actually surprised to hear such an accurate description from someone else, as my Googling has turned up very few matches so far.

I do not. It was one of the generic broad-spectrum antibiotics. One of those "take two then take one daily" if I remember correctly.

The doctor I went to was equally perplexed. He basically said "you never go to the doctor but you're here. I don't think you have lyme but I don't know what you have. I'll give you an antibiotic and see if it helps."

That sounds like Zithromax, aka a "Z-Pak".

It could have been. Looking at the list that MaDeuce posted above Doxycycline sounds more familiar. I really don't remember though.

Brand name for azithromyclin, similar to doxycycline. Both are antibiotics used for a wide variety of conditions where bacteria are known or suspected.

Azithromycin and doxycycline are completely different chemicals; the former is a macrolide, the latter is a tetracycline. Both are used for Lyme (and various other infections).

Not the OP, but my experience with Lyme 25+ years ago in New Jersey was similar. I took oral and IV antibiotics over multiple years. The antibiotics I recall taking are Claforan, Ceftin, Augmentin, Penicillin, Ampicillin, Rocephin, Doxycycline, Azithromycin.

While my symptoms would often improve during/after a course of IV antibiotics, they would always return. I don't ever recall thinking that one of them was what cured me. It was more like the symptoms gradually tapered off over years. I do, however, credit my MD's willingness to aggressively treat the symptoms with my eventual recovery.

Interestingly, both my MD and his wife (also an MD) had Lyme, as did at least one of their children. My advice to people who think they have Lyme is to seek out a physician that has experience in treating Lyme and a willingness to do so. At the time, there was a lot of pressure in the medical community to simply give two weeks of oral doxycycline and then tell the patient that they have to live with whatever remains.

> Doxycycline, Azithromycin

These are the two that sound familiar to me. Doxycycline in particular.

The bite was ~3 years ago for me. I still have the mark on my ankle. It was red and raised until about 6 months ago. Now it just looks like a faint bit of scar tissue.

Doxy is the firstling treatment for Lyme disease

> I took oral and IV antibiotics over multiple years.

This is not a standard or reasonable treatment for Lyme. Antibiotics will kill it in a standard course. It sucks that you still had issues afterwards. Did they do additional blood tests?

Sounds like you had Rocky Mountain Spotted Fever, I had the same symptoms and my doctor immediately put me on antibiotics. A few weeks later my blood tests came back with traces amounts of RMSF. It was the worst I've ever felt.

Did your WBC come back as elevated?

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