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dr_cl_aphra t1_irxyifs wrote

Reply to comment by cathar_here in Need Help with Lyme Disease by cathar_here

If you’ve been treated with doxycycline then you don’t have active Lyme anymore. The spirochetes are dead.

If you think you’re still having issues like fatigue, muscle pain, neurological changes, etc. then you probably had the active infection long enough to develop Tertiary Lyme—as in, the spirochetes caused potentially permanent damage before the doxy killed them.

In this case you don’t need ID. They aren’t going to do anything about it because there are no more bugs to kill.

You need to see a Neurologist to help manage the long-term consequences.

Do not drink the koolaid of the “Lyme literate” people. There is no such thing as chronic Lyme disease.

Source: am surgeon who works in New England and have seen a ton of Lyme disease.

Edit: Have gotten some private messages asking more questions so will put this here to further clarify.

The initial Lyme disease infection from the tick bite is like if your house has a termite infestation. You find it and call the exterminator (the provider who gives you antibiotics).

The antibiotics are like the pesticide that kills the termites. The termites are now all dead.

But the termites did damage to your house before they were killed. The extent of the damage and whether or not it can be fixed completely depends on how long the termites had to do their thing.

That damage is Tertiary Lyme. It is a very real thing that is recognized by real physicians, and there are ways to help it.

“Chronic Lyme” is a bullshit, made-up pile of quackery that basically pretends that the termites’ ghosts are still haunting your house and causing more damage (blood tests are negative for spirochetes but you don’t feel good so by golly they must still be there!).

The quacks tell you the termite ghosts must be exorcised with continued IV antibiotics, essential oils, or whatever else the quack wants to sell you.

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Designer-One-7210 t1_iry4c0c wrote

Whats the prognosis of the tertiary Lyme you mentioned? Possible to be cognitively 100% and get energy back? Have a friend with Lyme issues

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dr_cl_aphra t1_iry74qb wrote

Unfortunately it’s not great. But there’s a huge spectrum that really depends on how long the spirochetes were in there actively raising hell.

I have a friend with very bad tertiary Lyme. He’s a super hairy dude and completely missed the tick bite and the rash (if he even had one—not every does). So it took a long time before he sought attention and got a blood test proving it was Lyme.

Here in Maine, and New England in general, Lyme is super common so most PCPs and ER docs are pretty attuned to looking for it. Once he actually sought help, he got treated appropriately with antibiotics but it was too late and a lot of his symptoms now are permanent.

He has peripheral neuropathy (numbness in his hands and feet) that makes it hard to walk or do any fine motor tasks with his hands, so he’s on permanent disability. Gets fatigued very easily. But for him Lyrica was super helpful.

A good Neurologist, combined with therapies (cognitive, speech, physical, occupational) can help. I hope your friend recovers well.

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IeMang t1_irzhhfx wrote

Very well written and informative comment. As an interesting aside I’d like to add that the spirochetes themselves may not actually cause damage to the tissues, but rather the immune system responding to their presence causes damage. Wildlife reservoir populations of B. Burgdorferi have actually evolved not to respond to the presence of the bacteria as it doesn’t produce any toxic waste products and in a lab environment they don’t develop any symptoms of tertiary Lyme despite lifelong infection.

> As B. burgdorferi does not produce toxins or extracellular matrix-degrading proteases, most of the manifestations of human Lyme borreliosis at each of the three stages of disease result from inflammation generated by these immune responses.

Additionally, tertiary Lyme may also be due to disregulation of the immune system and not necessarily permanent damage to the tissues. I believe studies have shown modest success with immune modulating drugs. In addition to seeing a neurologist it would also be wise to talk to a rheumatologist. I don’t have a source handy for this claim but do have a paper somewhere that talks about it (I believe they mention it in the Nature paper linked above as well but don’t go into detail). I’ll dig it up and link it some time tomorrow.

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dr_cl_aphra t1_irzlhna wrote

Very nice, thank you for adding some nuance. I was writing mine off the cuff.

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