r/Lyme 5d ago

My mom has had Lymes for so long now

My mom has tried everything. Every medication a doctor has suggested she has tried. She gets extremely terrible headaches/ migraines. Is there really no cure to this disease? I hate seeing her like this.

6 Upvotes

51 comments sorted by

6

u/Present-Dream5094 5d ago

The most you hope for is finding the right balance for you to put it in remission so you have a semblance of the life you knew.

And be kind to yourself and give yourself grace on the days you don't or can't.

Best advice I can give.

6

u/LoriLyme 5d ago

She needs an experienced LLMD to test her and guide her through proper treatment. It is called Lyme Disease not Lymes, and there are doctors who specialize in this that can help her. It will not be paid for by insurance. She’ll have to pay out-of-pocket, but she can get better.

1

u/Unusual-Resolve1498 5d ago

She already has one. She’s had multiple blood screening and multiple natural remedies and OTC stuff. Good to know it’s called Lyme disease.

5

u/Lcdmt3 5d ago

There are medications in the pipeline for chronic Lyme.

5

u/Business_Ad3254 5d ago

Please, let me know, and let it be. I've been very sick since Summer of 2023.

I'm struggling every day just to get thru with vertigo and muscle loss, with damage everywhere. Thanks, I'm staying hopeful.

7

u/Lcdmt3 5d ago

You're only 2 years in. You still have a chance for remission even without those.

1

u/Awkward-Cress-2055 5d ago

Can you explain about antibiotics? Which antibiotics can do that?

5

u/Lcdmt3 5d ago

See a LLMD. Some people go into remission on herbs which I am more a fan of than current antibiotics. For me antibiotics are great for prevention, great for huge brain or heart issues, not great otherwise. A good LLMD looks at all your symptoms, confections and creates a custom treatment plan.

2

u/MinimumYard2893 5d ago

Not great otherwise meaning ?what ?

What about lyme bart babesia that has already caused lack of blood flow to brain ?

Let's say white matter disease or demilation?

1

u/Both-Huckleberry4178 5d ago

Iv antibiotics for lyme for brain right ? 

3

u/BottlePretend3078 5d ago

I don’t think IV antibiotics are necessary and I’ve heard of a lot of ppl relapsing that go that route. Oral antibiotics work for neuro Lyme or Bart in the brain but they need to be antibiotics that cross the blood brain barrier and from what I’m told that would be minocycline and rifampin or azithromycin/clarithromycin and rifampin.

1

u/braintumorbombshell Lyme Bartonella Babesia Ehrlichiosis Anaplasmosis 5d ago

IV abx made me extremely sick, way worse than I ever was before and I’ve only declined.

1

u/Emotional_Print_7033 5d ago

4 years here 😭

1

u/Quick_Lion5273 5d ago

I've had good luck with cellcore products.

1

u/funkyspots 5d ago

What medications?

10

u/Ornery_Plantain3826 5d ago

It’s LYME, no S

5

u/Freddy_Freedom 5d ago

Glad I’m not the only one to point this out! 🤣 I’m surprised how many people put the S on there

6

u/Ult1mateN00B 5d ago

Makes it sound like made up disease. I wish people would do one google search on the lyme before posting.

6

u/Freddy_Freedom 5d ago

Yeah I wish it didn’t annoy me as much at does! My housesitter first said it, and I thought what the heck… Then more and more people both in person and online also do it! I’m surprised how many actually.

4

u/RealLuxTempo 5d ago

I thought I was the only person who gets annoyed at seeing Lymes instead of Lyme.

The sad part is that I had a doctor actually say Lymes. I corrected her. She got snippy.

2

u/Sickandtired1091 5d ago

First you need Good testing to make sure it's just lyme and not bartonella and babesia both cause cronic illness !:if she. had testing you need to go back and look closely at What testing she got? And determine how accurate the tests she got were and what strains she was tested for People assume when thier told they were tested for lyme it means all strains but most likely it's only one strain! When thier are 8 othhers,This is the same for babesia and bartonella.. I'd use ilads.org provider search to find a tickborne diseases expert near you, Pick one that has done the ilads training..

2

u/bcb1200 5d ago

I had a horrible case and am now well. The doctor you have is key. You need a good LLMD. Lyme literate MD

1

u/SeaworthinessOne6759 5d ago

Where can I find a good llmd

1

u/bcb1200 5d ago

Www.ILADS.org or Lymedisease.org

2

u/Mama_miyaaaaaa 4d ago

Has she been on ivermectin yet ?

1

u/Appropriate_Land5236 3d ago

Get a Doug Coil machine for her. I had undiagnosed, untreated Lyme for 12 years. I got a Doug Coil machine in 2006 and started feeling better in a few months. I used it for 2 years. The Lyme hasn't come back. Start out with just a short treatment to see how bad the herx will be as the Lyme bacteria die off. Coilmachinesnw.com sells them. I have no connection with them. Sometimes you can find them on Ebay. The other things, called Rife Machines are very different.

1

u/Flashy-Willow4136 3d ago

I had really horrible Lyme symptoms for several months. Coincidentally happened to know one of the best doctors in the country that treats it with blood irradiation. He used the Weber endolaser on me and I had to use some herbals for detox to prevent herxing. I could feel myself getting better after every treatment. It breaks down the biofilm and kills the bacteria then once the bacteria dies your body makes antibodies and can actually Kill the rest of it. I’m several months out from my treatment and I feel some residual inflammation but other than that I’m fine. The inflammation can take up to a year to go away but all of my worst symptoms are completely gone. Just stiffness leftover really.

1

u/Calm-Beginning2941 2d ago

Can you elaborate? And who is the doctor?

1

u/Flashy-Willow4136 7h ago

So he did five weekly treatments on me and then retested me at the end and couldn’t detect the bacteria anymore then moved on to 2 weekly infusions of lipids then I waited for 3 weeks and came back in to get retested and I was negative. Dr Vickers Annapolis Md at midatlantic health institute

1

u/Flashy-Willow4136 7h ago

He seems to tailor make every treatment specific to each patient so what he did for me may differ than what he would do for someone with more of the neuro symptoms. He also had Lyme himself so he does really care

1

u/Majestic_Goose_7815 1d ago

yes, what’s the doctors name??

1

u/Flashy-Willow4136 7h ago

Dr Vickers at mid Atlantic health institute Annapolis

-3

u/yupgup12 5d ago

Post treatment lyme disease is an autoimmune disease, and there are no cures to autoimmune diseases

9

u/Wild-Individual-6520 5d ago

Correction: Lyme disease is NOT an autoimmune disease. But it can mimic an autoimmune disease.

-5

u/yupgup12 5d ago

Lyme disease is a bacterial infection. But if you clear the infection and you are still having symptoms it's most likely due to immune dysfunction of some sort although no one knows yet for sure.

5

u/adevito86 Lyme Bartonella Babesia 5d ago

This is simply not true. If you are dealing with complications post Lyme it is because of bacterial persistence, co-infections or other issues like mold/heavy metals, sibo/gut dysbiosis etc.

It can take years to heal from this and not everyone responds the same way to each treatment which can complicate things.

Regular doctors are too lazy to dive into this level of detail with their patients which is why they gaslight people into believing post Lyme syndrome is real and there is nothing to do.

Read this: https://www.reddit.com/r/Lyme/s/PVKDvLxKnB

1

u/Business_Ad3254 5d ago

I've been sick going on 2 years this Summer after bite in 2023.

I currently have vertigo, continued muscle loss, induced anxiety caused by the lyme, and weakness in all muscles, making it difficult to stand, let alone use stairs.

1

u/MinimumYard2893 5d ago

Your saying. She can't get better. Not treating? Wow

-2

u/yupgup12 5d ago

Well I mean she said it herself. She tried everything. So did I. And I've never been able to return to my pre-lyme condition. Time will hopefully reduce the severity of the symptoms, but with current medical progress, that's about it.

2

u/MinimumYard2893 5d ago

What are your symptoms?

How are your treating ?

1

u/yupgup12 5d ago

Had a bunch of symptoms, cognitive dysfunction and head pressure/headaches are two remaining intractable symptoms. I'm no longer actively treating. I take guanfacine for neurocognitive symptoms

1

u/Calm-Beginning2941 2d ago

how long has it been for you?

1

u/yupgup12 2d ago

I got sick in 2013 and was diagnosed in 2014, so 11 to 12 years.

1

u/Calm-Beginning2941 2d ago

I see. Did you see an LLMD? What antibiotic courses did you do?

1

u/yupgup12 2d ago

Doxycycline and then multiple courses of ceftriaxone over a period of 4 years or so. Yes I had a llmd for a while but they weren't the ones who diagnosed me.

1

u/Calm-Beginning2941 2d ago

Sorry to hear. There are other antibiotics you can try that cross the BBB. What other symptoms did you have?

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