Sister with Lyme

Hi all, I had posted a couple times last year about my sister, who has had lyme for maybe 11 years or so, but was only diagnosed with it about two and a half years ago. Since being diagnosed, she has had to switch doctors a few times, as she wasn’t seeing enough progress under some of them. As of a couple months ago, she is currently seeing one who is highly qualified and seems to have a good treatment game plan (she sits on the board of lymedisease.org, in fact).

The thing that is the biggest problem for her is the overall pain level, which hasn’t abated much. In fact, it seems as though the pain got much worse after an appointment last fall with a pelvic floor specialist who her previous doctor had referred her to for ongoing pelvic pain issues (in hindsight, this was a terrible recommendation, and is one of several bum steers that he gave her; she clearly wasn’t ready for that kind of intense physical therapy with so much of the infection still not under control). She already had lots of pain before that, but that appointment triggered a particularly horrible episode, in which she said that her body felt like it was on fire and she had to go to the ER several times in a span of a few days. Ever since then, she’s been dealing on a daily basis with a higher level of chronic pain than she’d previously had. She often describes “rattling”, “buzzing”, or “burning” sensations in her central nervous system, and it seems like ativan, which she has been taking for anxiety for years, is one of the few things that lessens the pain for a number of hours (although lately, she’s had to take 1 mg every 12-16 hours or so to keep things under control). She says the sensation often gets worse when she lies down at night before bed. She is extremely light-sensitive and can only look at computer screens or LEDs for a second or two before experiencing pain. Even non-LED lights can be a problem for her sometimes, and she has to stay in rooms with low light for large portions of the day.

It kind of seems as though a lot of her current pain is more attributable to co-infections (specifically, Bartonella) than to the Borrelia itself. Her previous doctors did almost nothing to address the Bartonella, but thankfully, the current one is. She’s getting infusions of Zithromax two times a week, as well as injections of Bicillin and doses of Disulfiram. She also takes a bunch of different herbs for support.

I’m wondering if other people have experienced what she is going through. Clearly the infection has caused some kind of central nervous sensitization, but is that something that’s likely to resolve as the infection dies down, or is there some kind of functional neurological issue at play? A neurologist who she saw a number of months ago said she could have functional neurological disorder, but he is not lyme-literate, so I’m not sure that he’s correct. Or is he? Is it possible for these infections to induce that kind of syndrome? It’s just strange that that pelvic floor appointment seems to have led to a lot of this.

I just wish she had some relief from the darn pain. How safe is the ativan to use on an ongoing basis? Being a benzodiazepene, I know it’s an addictive substance. Is there anything non-addictive that can do what the ativan does?

Also wondering what kind of timeline there might be toward healing. I know it varies from person to person, but how long has it taken some of you? Months? Years? What kind of range of time can be expected?

Any help would be appreciated. Thanks.

This sounds like small fiber neuropathy. I have it. The burning, the "buzzing"...pain always gets worst right before bed. It's caused by damage to the small nerve fibers in the skin. Affects the ANS and you can get brain sensations too. Does she have burning in her legs and hands?

Lyme can often trigger it, but its an immune system problem/CNS system problem caused by too many stressors on the nervous system, lyme being one of them.

The treatment most neurologists use is called IVIG. Works for some. For others, like myself, I'm finding that its taking a whole re-organization of my life to fix this. Removing every stressor, mental, infectious, toxic and dietary, to get this under control.

Look into small fiber neuropathy.

I mean I'm near certain she has SFN. I'm very involved in this stuff, if you have it and you hear someone else describe it its very easy to spot. Problem is most neurologists dont know much about it as the disease is just becoming recognized the past 3-4 years after the work of Annie Oaklander at Mass General, so most people go years before a diagnosis.

You can email me directly if you'd like.

Yes IVIG can be used while treating for lyme. It lowers inflammation, so it may make the lyme treatment easier to handle.

Where are you located? IVIG can be hard to get, most of the drs who people go to to get it are in the north east. Several of them are LLMDs.

One thing I will warn you, if you read about it on the internet its going to say its a progressive disease with no cure. Your sister will probably agree with this since she's had it for years and it feels unstoppable when you have no idea whats going on...but there are ways to get it under control and into remission.

Post Edited (dcd2103) : 7/22/2021 12:20:18 PM (GMT-6)

FYI: Ativan is an benzo, but with anti-epileptic properties. Anti-epileptic drugs are used to treat (the symptoms of) neuropathy. That's why she feels better on ativan. The buzzing fits that she is having are like a "seizure" of the nerves, hence the reason an anti-seizure medication helps. Most drs use gabapentin, cymbalta, and lyrica for this reason, which are all kind of similar drugs. I dont recommend these though.

As I mentioned, the other two first line treatments for pain are lyrica and cymbalta. Both can cause huge problems. I would not recommend them. They can actually make it worse over time. Youre papering over a nervous system which is already on edge, w/ another toxic drug.

The only drug that I found that helps, for me at least, is ketamine. It can calm the nervous system and increases BDNF. But you have to do an infusion and it takes all day. It can be great for dulling the pain during an acute flare though.

She should definitely go on a ketogenic diet, thats the one thing that seems to help everyone w this disease

Send me an email we should probably discuss offline

Good call WBF. Just noticed that as well on my read-over, since he mentioned the neuropathy started recently and she's currently on DSF.

DSF toxicity can cause small fiber neuropathy as well.

Quick question: We live in the Los Angeles area, and I am wondering if others here know good LLMDs in the area. Worth asking about in case the current doc doesn’t work out. Is there a good resource or directory of them? Thanks.