What are we underestimating or missing about Lyme? What do successful treatments have in common?

I see recovery from lyme in 3 major phases

1. Eradicate the germ(s) as much as possible
2. Calm down the excessive immune activity (seems like this doesn't always just happen when the germs are gone)
3. Heal the damage

Deep_sleep said...

I think the biggest problem is the high focus on taking things that kills. Compare to sports, where training a lot of course is important, but if you don’t work on your sleep, diet, and recovery, there is a 0 % chance that you will reach the top. So treatment is great, but if that’s almost all you are focusing on after a few years of illness, you have to look at the wider picture.

For Lyme I believe that diet, sleep and detox are the most important things. Then add some light stretching, walking and later some light exercises when the body works better.

I agree with Deep_sleep that the focus should not be on killing the spirochetes as once you build up your immune system by diet, sleep and detoxing your body will naturally kill the spirochetes. I don't think people give our bodies enough credit for doing what they are supposed to do. When we get a paper cut we don't go crazy taking pharmaceuticals (at least I don't). The paper cut will heal by itself.

I would add that lowering stress is extremely important as stress lowers the immune system. In my case when I became sick I was very stressed. I was aware of what was going on in my life so I did the best I could do eliminate stressors. First it takes being totally honest with yourself and facing what's bothering you then creating a plan on how to deal with those stressors (some moves may be drastic, i.e.: I divorced my husband because he was not capable of supporting me when I was sick but was verbally abusive).

1. Lower stress
2. Eat healthy (low carbs, no sugar, more veggies)
3. Detox on a daily basis (and I don't mean taking supplements but dry skin brushing, detox baths or foot baths, exercise, sauna, etc.)
4. Do things you enjoy so you get a more positive outlook (easier said then done). One may need to re-evaluate their lives and make changes
5. Stay away from negative people and the news (MSM). Yes, I know it's good to be informed (so only a little bit of news then change the channel or put on music you enjoy)

That's all I can think of right now as I'm not fully awake yet!

Denise

I think one of the biggest things I've learned is the function of the different germs and the different treatments that are required to reduce the bacterial load of each of them. Many people reference "Lyme" but the complicated cases that we discuss on here almost always involve other co-infections, environmental toxins (mold) or immune deficiencies. The scientific evidence is clear that the germs work together to weaken the immune system, evade it and then infest the hardest areas in the body for it to reach (brain, CNS, eyes). Babesia has a strong immune deregulation function to it and it is a very common co-infection.

It takes a very talented LLMD to tease out all of the symptoms and to determine if something else is afoot (mold). I had one close friend who continued to treat Bartonella when she had mold toxicity and needed anti-fungal treatments to completely recover. Her LLMD didn't know much about mold.

My most recent treatment regimens focus on treating biofilms, the growing forms and persister forms of the germ. You have to address all of the forms or you will be unsuccessful in treating it. For me I was able to treat the Lyme portion with 1 antibiotic in about 5 weeks (I had a herx that I thought was going to kill me). The Babesia took much much longer because of rifampin lowering the levels of Mepron in my body. It took me over a year on a double dose of Mepron to relieve my Babesia symptoms and have a negative Igenex FISH test. For me the 3PM crash and exhaustion after exercise were the big Babesia symptoms.

As I have treated each germ I have improved. From not being able to walk to the mailbox to about 90% where I am today (able to work, exercise to my prior capacity and generally enjoy life). Lately I have been getting more and more aggressive in trying new Bartonella treatments. Its challenging because similar symptoms can be caused by mold toxicity (which I also have).

Without proper rest, nutrition and immune support in place your body can not recover.

One thing I can say for sure is when a treatment isn't working (like a few weeks showing no improvement) then stop it and switch to something else! Again it is very hard to differentiate a herx from symptoms returning but if you don't improve change your regimen. I have had to use 3-4 and even 5 drugs at one time to treat.

I believe all the B's develop resistance over a period of time, and that we all go over treatment duration.

I am coming to believe that a consistent rotation of treatment is needed.

Many of my doctors believe mitochondrial dysfunction is therapies don’t work on me. I just don’t have enough energy to kick the bugs or fix and heal everything. There is also a theory that many people have mcas and don’t know it. Then they get Lyme and can’t get over it because mcas means their immune system doesn’t behave properly.

skinny_joe said...
I think a lot of folks symptoms are not actually from a Borrelia infection. They may have an infection but its under control and your symptoms are from something else entirely.

I totally agree. From my personal experience as well as helping others with severe symptoms there are toxins that are still lodged in one's body. Detoxing is so important (and I'm not just talking supplements). I don't know why people think their symptoms come from bacteria. Bacteria does not cause pain, toxins from the die-offs cause pain. There is a huge difference.

I also think that some people use chronic illness to avoid what's going on in their lives because they can't face it so it's easier to blame it on a chronic illness. Again, I said "some" people not all.

Denise

Consistent rotation of effective treatment is what I have found works. In order for the treatment to be effective you have to address all forms of the germ (including persister forms). I believe that the persister forms of the germs are responsible for the improvement and then relapse cycle that many of us have been through.

there is an awful lot of ground to cover here - i don't think i can do justice to all of it but a few points seem worth mentioning

on lifestyle changes vs antibiotics approaches -

in any population there will be advocates of one thing over another - that's natural enough - but i think we should be wary of viewing tackling Lyme as all about lifestyle changes - or all about antibiotics / killing.
My view is they are not mutually exclusive approaches and in reality most people will need to address both simultaneously - while a few on either end of the distribution curve will get better with one and not the other - similarly, there are also some people who get better without any intervention at all

but for most people with chronic illness there will be multiple contributing factors that will have to be unpicked and addressed in order to get well. i think its important to present a balanced perspective on this as newcomers could otherwise be persuaded that mostly they just need to "follow a healthy lifestyle" and they will get well - and while it will certainly help, and would indeed be a great foundational approach to recovery - from what i have seen and read over the past 6 years that's not likely to be true for the majority.

other things we could be missing?
one thing i recall from Dr Rajeda's presentations ( the guy that developed disulfiram treatment for lyme ) that i thought was very interesting - is that he presented the microcirculation issues and microclotting were barriers to treatment in chronic lyme - because they interfered with drug penetration and perfusion of tissues - and he went on to say that you could consider disulfiram treatment as a 2-phase affair with the first low dose phase helping to resolve this perfusion issue and then the high dose treatments being the more strongly antimicrobial - that could be effective now that tissue penetration was better. so perhaps this lack of perfusion is hampering treatment with common abx....

biofilms etc -
biofilms are certainly one of the mechanisms that leads to Lyme being difficult to eradicate - as its well demonstrated that biofilms provide protection from pretty much all antibiotic substances and also take time to break down - so that makes sense
however - its also clear that bacterial persistence ( forming persister cells ) is something lyme spirochetes do well - and that this is a continuously variable process within a spirochete population - so some spirochetes are entering a persister state while others are coming out of persistence and replicating and they are able to continue to do this to some degree despite the presence of antibiotics or even several antibiotics in clinically achievable concentrations. when you then consider that there are always regions in the body where its is difficult to achieve bactericidal concentrations of abx - eg brain, connective tissues, eye etc then its possible to see how the disease can be hard to treat - due to this mechanism

incidentally - many prominent lyme doctors doctors are on record as saying lyme by itself is usually easy to "get under control" with antibiotics - by which they mean that the symptoms can usually be dramatically reduced in a few weeks or a couple of months with appropriate antibiotics. but the problem with lyme is that it keeps coming back - presumably due to the mechanism above ( perhaps combined with immune system damage )

co-infections
so if lyme by itself is "relatively easy to treat" - how come so many people here are suffering long term - have v poor results from treatment of maybe only partial response after several months.
whilst with all chronic illnesses there will be multiple factors driving this in each case - like hormonal disruption, auto-immunity, maybe poor diet, lifestyle or stress or the general damage and dysregulation caused by long term infection - it still seems to me that co-infection is a likely explanation for this poor or slow response.

this makes a lot of sense as - although we think of lyme testing as poor - pretty much all co-infection testing is even worse - and there are so many of them to test for few people actually do test for the dozen or more common ones - and even if they did - due to the poor sensitivity you are unlikely to get positive results even if you do ( if sensitivity s circa 25% - you have 3x more chance of getting a negative result s than positive - even if infected )

i think this leads to a tendency to say "i have lyme" or "you have lyme" - but in reality most of us that are sick and have been sick for years with hard to treat "lyme like illness" likely have lyme but also 2or more co-infections as well ( there have been a few studies of co-infection prevalence showing hat its the norm rather than the exception with something like 85% of patients having 2 or more additional co-infections )
i think LLMD's also kind of keep this oversimplification or non-specific diagnosis going - because they often take the approach of - testing is poor - so we go by symptoms and tend to treat with abx that should cover everything - so "lyme disease" is kind of shorthand for lyme and other co-infections along with auto-immune reactions, neuropathies and a host of other issues"

bartonella
i thought this worth a special mention aside from general co-infections - as it seems to figure prominently in some many of the accounts here - especially in those that have hard to treat illness.

very often there is no positive test result - but again with test sensitivities for standard bart tests of around 25% for most labs - we are 3x more likely to get a negative result than a positive one - even if we are infected - so this is also in line with what we would expect.

many LLMD's as well as personal accounts here underline how hard it can be to treat - and is known for its very slow or incomplete response in many patients - its also known to form actual bacterial resistance - something lyme dose not do. so again fitting with comments about having to rotate abx.

in his dapsone trials - the most effective combination therapies trailed to date - Horwitz states that those that were still the sickest after treatment / the hardest to treat we those patients with bartonella or suspected bartonella - again underlining how this could well be a major factor in slow response to treatment for many - even if they do not have overt symptoms of bartonella.

its also worth noting that there are other closely related bacteria that have v similar characteristic to bartonella and may be just as hard to treat and confused with bartonella clinically, eg Brucella, q-fever, maybe some of the many rickettsia.

bartonella also tend to come from our domestic animals - cats dogs, farm animals - all of which are exposed to antibiotics routinely - so this could account for some of us getting infected with antibiotic resistant strains - something that is rare in the wild animal populations who re not exposed to antibiotics.

Post Edited (Garzie) : 8/9/2021 3:02:44 PM (GMT-6)

The key to all of this is your specific immune function, and your specific genes that can play a part in your immune system. Both of which are not very well understood.....so much that its still mostly ignored.

All of you here and lurking with long lasting lyme (and or co-infections) symptoms, or other symptoms that it helped generate have some type of immune issue. If not for this, you would be fine, and would not be here.

Ive been to immune specialist (immunologists) and unfortunately they didnt seem to know anymore than I do from the internet..

.

Post Edited (astroman) : 8/9/2021 11:38:19 AM (GMT-6)

"Sometimes it's more than just the immune system.... There is something that breaks our immune system or deteriorates it, and it's not just the Lyme that does that."

I didnt elaborate on that, but thats part of what im talking about..

Look at all those who get these infections acutely (the vast majority) ....and they heal rather fast. They have something in their immune system (normal) that is or was haywire in us. It was already there with the door wide open, we were just not aware of the possibilities (nor was anyone else, healthcare ect).