posted
I was dx'd with Lyme in East Brunswick, NJ in 1998, was treated, then relapsed a year or two later. not been the same since. i was dx'd with Hashimotos 12 years ago, and spent 2 weeks in ICU with Covid in 2021, almost didn't make it through that. since then, i've been dx'd with type 2 diabetes and celiac.
recently switched to a new endo, and she did alot of her work in the Northeast. in telling her my history, her eyes lit up when i mentioned Lyme, from what she said, apparently the autoimmune disorders are a thing after lyme? i have an appt with a rheuma in sept to get started on trying to figure this garbage out. anyone with similar story?
(breaking up text for easier reading for many here)
[ 07-25-2025, 03:49 AM: Message edited by: Robin123 ]
Posts: 6 | From Central FLorida (from NJ) | Registered: May 2016
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Here’s how the great Dr H explains it; “Immune dysfunction, is very important because there are often autoimmune manifestations present, due to an overstimulated immune system from Lyme.
Patients may get positive anti-nuclear antibodies (ANA), which doesn't mean they have lupus. They get positive rheumatoid factors, which doesn't mean they have rheumatoid arthritis (RA).
We find these autoimmune markers, including anti-thyroid antibodies, and anti-ganglioside antibodies (which are associated with neuropathy - tingling, numbness, burning) - and can also be associated with POTS (postural orthostatic tachycardia syndrome)/dysautonomia.
These people come in with low blood pressure and palpitations, saying they feel tired, dizzy, and with cognitive dysfunction. Clearly, there are autoimmune manifestations, but my clinical experience has proven to me that, chronic, persistent infection is often underlying the process, as autoimmune markers often turn NEGATIVE with antibiotic treatment.
Inflammation is a key component that underlies many chronic disease states, and helps us to understand persistent symptoms in Lyme disease.
During infection, there are molecules secreted called inflammatory cytokines, like tumor necrosis factor alpha, interleukin 1 (IL-1), interleukin 6 (IL-6) as well as interferon gamma. These molecules can cause fatigue, aches and pains (whether that is joint pain, muscle pain, and/or nerve pain), sleep and mood disorders, as well as cognitive difficulties.
All of these symptoms can be caused by inflammatory cytokines. If you can lower the load of these inflammatory molecules, even if you don't get rid of every last infection, the patient will do well.”
IMO, I don’t think a main stream rheumatologist will consider an antibiotic therapy as their go to drug of choice are steroids. I know Dr K treats his autoimmune patients with Penicillins shots and Plaquenil with success.
You can also check out The Road Back Foundation, which advocates that infections are the cause of autoimmune rheumatoid arthritis.
posted
WoW, Bartenderbonnie, that explains alot!! there was so little info out there when i got it back then, and dr's/insurance didn't know how or want to deal with it. 30 days of antibiotics and get back to work. i'm going to see a Rheuma later this summer at the recommendation of the new endo.
Thank You!!!
Posts: 6 | From Central FLorida (from NJ) | Registered: May 2016
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
PT,
"...Inflammation is a key component that underlies many chronic disease states, and helps us to understand persistent symptoms in Lyme disease.
During infection, there are molecules secreted called inflammatory cytokines, like tumor necrosis factor alpha, interleukin 1 (IL-1), interleukin 6 (IL-6) as well as interferon gamma. These molecules can cause fatigue, aches and pains (whether that is joint pain, muscle pain, and/or nerve pain), sleep and mood disorders, as well as cognitive difficulties.
All of these symptoms can be caused by inflammatory cytokines. If you can lower the load of these inflammatory molecules, even if you don't get rid of every last infection, the patient will do well..."
I have been advocating this concept like broken record for over 10 years now.
Chasing symptoms and specialists was always a dead end for me and has been for so many others. Once Lyme becomes chronic, chasing the bugs is not the answer.
Mild Hyperbaric Oxygen Therapy (mHBOT) reduces/eliminates the runaway cytokine inflammatory response. This is how I ultimately became well over 10 years ago.
mHBOT is a powerful therapy that treats the common denominators of neuro-inflammatory conditions (e.g., TBD, Long Covid, toxic encephalopathy, etc.), and can be done at home.
Please read the Mild Hyperbaric thread in it's entirety if you can, and PM me for more information/support if you're interested:
posted
Welcome - I think it would be helpful if the rheum doctor also knows about Lyme. Best to work with a Lyme-literate doctor.
Posts: 13171 | From San Francisco | Registered: May 2006
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quote:Originally posted by Robin123: Welcome - I think it would be helpful if the rheum doctor also knows about Lyme. Best to work with a Lyme-literate doctor.
Thank You, that's the plan,.. unfortunately it was so long ago, neither the dr's office or i have the records. so fun!!
Posts: 6 | From Central FLorida (from NJ) | Registered: May 2016
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