Are we wrong about chronic Lyme disease?

https://m.youtube.com/shorts/kt6JyIvGOWI

You’ve got a lot of good info on this thread in response to your question. I thought I’d throw in an article I read awhile back that always stuck with me and was the easiest way for me to understand it at that time. I’ll include the link to article…it’s an interview with Dr. Neil Spector, a top oncologist at Duke at the time. He became a believer after his personal experience with it. It’s from back in 2016, but I still think it’s very informative.

“You have famously compared cancer to Lyme. What are their similarities?

To me, Lyme is the infectious disease equivalent of cancer. We don't talk about cancer as just one disease anymore, and we should stop talking about Lyme this way. There are so many strains and co-infections. When you're bitten by a tick, you can get five or ten different infections at the same time.”

“I also find it ludicrous to call all tick-borne disease, Lyme Disease. In breast cancer, we don't just say, "You have breast cancer," because that simply doesn't mean anything anymore. The language is important because it has a bearing on treatment.
With cancer, we know that administering one algorithmic form of treatment doesn't work. You have to understand the wiring that drives those tumors--the nuances, the mutations--and target them specifically. I think we need to start thinking this way about Lyme.”

https://www.huffpost.com/entry/lyme-the-infectious-disea_b_9243460/amp

Garzie said...
i have just spent a good deal of time preparing a letter to send to my GP that tries to lay out to the uninitiated what Lyme disease is, why is hard to treat, why long term or combination antibiotics are needed etc

i was aware that to do this in anything other than a fully scientifically referenced and detailed fashion would just be inviting the GP to write it off instantly as internet hysteria

....

I was gonna do the same for my doctor. Could you share the letter?

So my lab req for tests that Dr J wants done monthly expired.
I had to ask my “new” GP for a new one.
My previous dr was “on board” and supportive of my diagnosis/treatment.
(And as time went on - she saw that my symptoms were resolving with the abx)

Well she gave up doctoring awhile ago - I wasn’t sure what the new doc would be like.

I spoke to him yesterday and he gave me a lab req to continue on.
He is not denying chronic Lyme (so many docs here do)

Feeling fortunate !!

Hopefully you're not Lyme Science Guy TM trying to sow division.

Let's figure this out. First, Lyme doesn't exist, because the legal def. of Lyme is a false case definition which exists merely as high-antibody titer prone patients with arthritis in one knee. That is 15% of Borreliosis patients, the rest, 85%, the sickest, will NOT TEST POSITIVE due to raising of cut off standard. The test is 40% sensitive which means 93% of those with 'Lyme' or borreliosis will NOT test positive and when you're seronegatve you're usually sicker due to immunosuppression and tolerization/anergy.

Chronic Borreliosis exists and can cause an AIDS/post-Sepsis syndrome allowing other opportunistic infections to disseminate.

I've had a similar, but opposite,experience. For myself, living a lifestyle equating to health is fundamental for me to have any chance of improving. If I'm not getting 8-9 hours a sleep a night then I'm not improving no matter what treatment I do. If I'm eating the Standard American Diet then I'm inflamed no matter what I do. If I'm not moving my body, in some respect, every day circulating blood and oxygen then I'm going to struggle no matter what I do. That makes herxing/flaring so tough since one can't really do much except lay down and try to rest. Detox methods such as sauna and epsom salt baths help but don't replace exercise in my experience.

These things are baseline. However, they don't help me overcome disease symptoms and function normally. The only thing that has ever led to significant progress for me is a treatment that is effective. The last noticeably effective treatment I did was Disulfiram. When I stopped DSF I tried quitting treatment to focus on a healthy lifestyle hoping that I would have an acceptable quality of life. Unfortunately, it did not happen. In fact, the relapse was quick. Within a couple of months I was already struggling again. I tapered down on DSF stopping entirely by summer 2020. My disease worsened exceptionally throughout the rest of 2020. In 2021, I went to the ER twice. After I got back on some treatment some of my worse symptoms abated somewhat (heart and neuro).

The question is why does this happen? Well, the disease seems fairly complex once in the chronic stage. People may have different co-infections and reactivated viruses. The disease may have triggered other malfunctions within the body that need to be addressed. The disease may make some people more susceptible to other types of issues. There may be an autoimmune component. There is almost certainly a mental component (though I must say I cringe when I see people claim that some type of mental training can essentially "cure" their disease. I am a huge proponent of meditation and things of that ilk. I think they can help cope and create a more balanced mind, but it doesn't cure physical disease)

For myself, as my back once again illustrates to me today, Bartonella seems to be the bugger I can't get under control. This is based on signs and symptoms. I could be wrong, but that seems to be where the evidence points. I mostly agree with doctors who's methodology is to suppress infections while simultaneously bring the immune system back to balance to "control" the bodily environment. The big problem with this is this is about as abstract as a thought as one can imagine. The suppressing infection part doesn't seem easy, but is more straight forward. The immune system part seems more nebulous. The best I can ascertain is that the basic lifestyle strategies outlined in this thread are fundamentals. After that, things like fasting, herbs, maybe some supplements, oxygen treatment (ozone, HBOT), IVIG, gut health, checking for toxins (mold, metals), IV support, among other things. I got bit in the summer of 2015. This illness has changed my whole life. I'm still trying to figure out what will work for me in the long term to give me some quality of life back. There is stuff I still haven't tried, but that will require me to venture deeper into the weeds.

I am supremely confident that we aren't wrong about "Chronic Lyme". I think it is a semantic thing. What does Chronic Lyme mean? Does it mean a chronic illness spurred on by persistent borrelia bacteria? Maybe. Maybe not. Maybe in some cases. Maybe not in other cases. Maybe it plays a role, but isn't the whole shebang. It seems that most who are chronically ill need more than just to focus on borrelia eradication, but then again, some people are reaching remission off Disufliram alone. So who knows really?

Post Edited (Lymie24) : 6/29/2022 9:15:29 AM (GMT-6)

Lymie24 said...

These things are baseline. However, they don't help me overcome disease symptoms and function normally. The only thing that has ever led to significant progress for me is a treatment that is effective.

Yes, you would normally need to do lifestyle changes and treatment at the same time, where it's very rare that just one of those will take you that far. I have stopped taking all treatments as I get too many toxins in my system from starting going to a gym and working out harder compared to my easier workouts at home. But this is very rare, and I do a ton of different things for my health and I'm very functional.

Lymie24 said...

There is almost certainly a mental component (though I must say I cringe when I see people claim that some type of mental training can essentially "cure" their disease. I am a huge proponent of meditation and things of that ilk. I think they can help cope and create a more balanced mind, but it doesn't cure physical disease)

Lower time spent in fight or flight means that the body itself can spend more time healing, so yes these things can be a big part of getting well. By doing 20+ lifestyle things + treatment will accelerate the healing process.

Deep_sleep said...

Lymie24 said...

These things are baseline. However, they don't help me overcome disease symptoms and function normally. The only thing that has ever led to significant progress for me is a treatment that is effective.

Yes, you would normally need to do lifestyle changes and treatment at the same time, where it's very rare that just one of those will take you that far. I have stopped taking all treatments as I get too many toxins in my system from starting going to a gym and working out harder compared to my easier workouts at home. But this is very rare, and I do a ton of different things for my health and I'm very functional.

Lymie24 said...

There is almost certainly a mental component (though I must say I cringe when I see people claim that some type of mental training can essentially "cure" their disease. I am a huge proponent of meditation and things of that ilk. I think they can help cope and create a more balanced mind, but it doesn't cure physical disease)

Lower time spent in fight or flight means that the body itself can spend more time healing, so yes these things can be a big part of getting well. By doing 20+ lifestyle things + treatment will accelerate the healing process.

That's awesome you are highly functional. That's really my goal. I don't really care about eliminating all the problematic infections from my body. I just want to be able to live, at least, semi-normally. If I could get by on just lifestyle stuff I would be ecstatic.

Unfortunately, that hasn't worked for me. The last time I had significant success was Disufiram. The first couple of months of DSF made me want to die. Complete agony with the intense herxing. After a couple of months it cleared. I started feeling much better. My chronic inflammation symptoms died down greatly. I had more energy. I got back into the gym. I was lifting pretty heavy, used the stair climber, used the sauna, you can bet I was sweating my butt off every session. It wasn't perfect. I'd still crash some days, but I'd generally recover quickly and the periods of crashing became less and less. I was getting stronger and healthier. It's crazy. You can feel your body changing for the better when this happens. It's extremely motivating.

Then reality and the world hit me in the face. DSF if not a drug you want to stay on long term with high dosages. So I weaned off. COVID hit and I stopped going to the gym. All of this led to a fast relapse. I was back going to ERs in 2021. This is after years of treatment. It's insane.

I agree about the fight or flight response.Chronic illness can cause this just from the angst/anxiety and never getting relief. That's important. However, from my experience, it's extraordinarily important to treat Bartonella or Bartonella like organisms if you can't get out of fight or flight. Bart in of itself, the best that I can tell, caused my nervous system to constantly be in fight or flight. There was no mind training I could do to stop it. I could feel the processes happening in my body. Only treatment helped me get over that hump a bit.

Our biological pathways are about 99.997% efficient. Once we have Lyme disease, nutrient depletion, hypoxia, epigenetic shifts, and toxins/metals block various pathways and make our body about 99.7% efficient. That is basically what we are when we turn 80 years old. The oxidative stress increase is significant. It can happen with Long COVID as well.

We need extra ordinary levels of nutrients to become more efficient, a change in the composition and ratio of our GI bacteria and to unblock pathways to get back to being healthy.

The physicians are also taught incorrectly about Lyme Disease and the IDSA is an arm of Big Pharma. They are a joke.

Girlie said...
“ What if it is another condition and we are just wrapped around the idea that its Lyme disease because some doctor that is charging us 2000 dollars a visit says it is.“

Well, my Dr (bless her heart) tested me for everything and NOTHING else came up.
All the autoimmune diseases as well as some vitamin deficiencies.
She sent me to two endocrinologists, an ear/nose/throat specialist, two rheumatologists, a physiatrist (not to be confused with a psychiatrist)…,

Nothing showed up.

Then I got an Igenex test done and it was positive.

Same here. I went through it for years. Got every test in the book and saw every specialist. Then igenex came back positive .