Need Help with Lyme Disease

Submitted by cathar_here t3_y1j0jw in Maine

I'm one of the crazy people that lives in Maine 6 months a year and then lives in Texas 6 months a year. Evidently last summer I got bit by a tick with no bullseye ring and didn't know it. I started having joint problems in Texas in January/February and no one in Texas knew what it could be. They did all sorts of tests for autoimmune problems, but it wasn't until I got back to Main in April/May, a year after getting bit, that I went to a doctor in Maine because my knee completely locked up. Well, he took one look at me and said, you probably have lyme disease, and he was right. My problem is I'm back in Texas now and no one here knows how to treat or help with it. I guessing I'm asking for help to find someone in Maine that might take me on as a patient in a Telemedicine fashion until I can get back up there.

You guys will be happy to know that medical care is so much better in Maine that Texas, lol, keep up the great work.

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pancake____ t1_irxt05s wrote

There’s a difference between an ID doc and a “Lyme literate” doc - who will try to put you on extended courses of IV antibiotics with no evidence, but will be lining their pockets with your cash. If you did 28 days of oral antibiotics you’re probably done with treatment in the mainstream medical community.

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cathar_here OP t1_irxt8bv wrote

I have actually been through 2 rounds of 28 days on doxycycline and yes, I'm looking for someone in Maine that specializes in Lyme Disease, and I like my odds with doctors there than in Texas, if that makes sense

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dr_cl_aphra t1_irxyifs wrote

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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bunkerbash t1_iry7ub9 wrote

Not Maine, but when my husband was finally diagnosed with Lyme after almost a year and had debilitating damage to his feet so bad he could barely walk at 33, Dr. Luger was a god-send. He is THE Lyme expert and is a lovely person. link And I know how scary this disease is. It took my Husband several years to fully recover even after the antibiotics. Wishing you all the best

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alpha417 t1_irxo1cd wrote

this is what infectious disease consults are for, not the reddits...

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cathar_here OP t1_irxobql wrote

I have been struggling with finding an infectious disease doctor in texas that will take me on as a patient, funny thing is in Texas, they can just refuse to see me, and I have been referred t 6 different ID doctors and all 6 of them have refused to take me on as a patient. There are less than 100 lyme disease cases in Texas a year, or somerhing like that, and no one down here wants to mess with me.

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Wistfield t1_irxpwbn wrote

Maybe reach out to this org? They might have some leads for you, or possibly someone in one of the listed support groups would know who to contact.

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cathar_here OP t1_irxrtyy wrote

yep, filled out the contact us about 10 days ago on that site, and I haven't heard back from anyone yet, but I filled it out again just to see if maybe something went wrong the first time

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Wistfield t1_irxvzpc wrote

Ugh. I’m sorry this has been such a struggle for you

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cathar_here OP t1_irxw5z5 wrote

I appreciate the help and hoping things turn around, or I'll get to spend my first winter back in Maine in over 10 year haha

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IamSauerKraut t1_iryr4vf wrote

Head north... skip Texas and their stupid anti-people laws. Alligators there have more fights to medical treatment than humans do.

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Empty_Pressure8574 t1_irxu0mf wrote

My Dad has latent Lyme Disease which means that he can’t get rid of it. Is no joke. He uses green walnut husk extract and turmeric for herbal remedies and had to go on antibiotics. Also if your looking for a doctor that treats lyme all the time look one up in Long Island New York. It’s been there for a long time and before they had a name for it the locals call it the montauk knee.

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KYazut t1_irxzp6x wrote

If you’ve already done the recommended anti-biotic courses for Lyme, you’re basically probably looking at symptom management for your post-treatment symptoms (potentially due to PLDS).

To put it another way, a Lyme expert may help, but in the short term, I’d look into symptom management options with whatever doctor you can get in to see.

https://www.cdc.gov/lyme/postlds/index.html

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4847307/

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MonsterByDay t1_irxtayv wrote

I have no advice, but I can offer sympathy.

I dealt with Lyme last spring and it was awful. Fortunately we caught it early enough that they were able to nuke it with antibiotics and it hadn’t been back since, but it sucked.

Have you tried calling your insurance company? They might have in network suggestions on the telehealth front.

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cathar_here OP t1_irxtghf wrote

oddly enough, no, I never even thought of that, so I think I might call them and see what they have to say

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IamSauerKraut t1_iryqzb6 wrote

Been there, done that. A few times. The doxy does a number on the intestines.

Best treatment was at Exeter NH Hospital. They recognized the symptoms right away and IV'd me then and there. Healing took awhile, tho. A place further down in another state required some amount of begging but they had nothing at their hospital pharm.

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Majestic-Feedback541 t1_irxu55a wrote

Why not contact the Dr you went to up here and see if they can offer teleservices or can refer you to someone who can (and is accepting new patients)? Or have your primary Dr in Texas consult with the Dr you had here (or someone who knows about Lyme disease and treatment)?

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cathar_here OP t1_irxubf2 wrote

I am working through that office right now, and I'm actually considering coming back up if they won't do telemedicine, so I'm waiting to hear back from their office over the next couple of days

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Majestic-Feedback541 t1_irxuwdb wrote

That's also an option, but a pain. If you do come back here for treatment, I'd recommend asking if they can give a 6 month or year treatment plan/prescription or something.

I hope you hear back soon and it all works out for you!

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MSCOTTGARAND t1_irynpvo wrote

Half of the doctors can't even agree if chronic lyme disease is a real problem. Go doc shopping.

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biggestofbears t1_irxsubc wrote

Texas is the best at being terrible with their power grid, healthcare, and treating all humans like humans...

But maybe you can get lucky and tell one of the doctors you have Lyme disease and they'll figure out how to treat it.

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heklakatla t1_iryvc6k wrote

What /u/IamSauerKraut said is true. Doxy can mix up the gut... In my Lyme case I ate a lot of Sauer Kraut, Kimchi, and other fermented things along with a diversity of fresh fruits and veggies. It too me close to 6-months post-Doxy to regain my functional memory back and I'm not convinced I ever got north of 85% of what I started with. I've had to come to embrace the new normal and change how I do things.

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IamSauerKraut t1_iryqgeh wrote

Move to Easton, PA. They know how to treat Lyme's there.

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Affectionate_Neat919 t1_irxzbbt wrote

https://www.steveclarknd.com

My ex had luck with him.

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giantchinaman t1_is0e684 wrote

🦆

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Affectionate_Neat919 t1_is0eu76 wrote

I love it. Downvoted for offering a potential resource. Very open-minded.

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giantchinaman t1_is0fqlk wrote

To be clear, I downvoted you for linking a naturopath. Naturopathy is pseudoscience. Promoting snake oil when someone is a) having symptoms/ looking for real advice and b) an actual doctor responded accurately above deserves to be downvoted.

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Affectionate_Neat919 t1_is0irew wrote

You have clearly demonstrated the axiom “opinions are like assholes - everybody has one” is alive and well. Enjoy the day.

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SeawolfGaming t1_iryl0tq wrote

I mean did you read the post?

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Affectionate_Neat919 t1_irymweh wrote

Why yes I did. He takes patients and is willing to meet virtually and has good luck moving beyond the conventional treatment to look at actually treating causes rather than symptoms (more holistic). My ex was in a bad way and is now remarkably better.

Did you read the post?

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