Constant spaced out feeling

[skyfall]

Thank you so much for the reply. I know exactly what you mean by feeling it. I just often feel like i am going through the motions and it is so very weird. I look in the mirror and don't even feel like the person in the reflection. Everything just feels all slowed down and not real. It is pretty bizarre. I know i have a lot going on so it is so hard to pinpoint the problem seems so many different things can cause the problem.

I have wondered if i have candida, but i went on a strict protocol for it for a few weeks and didn't remotely see any improvement. The doctor at the time said if i had it i probably would see a little improvement at least. My lyme doctor suspects lyme, bartonella, and babesia. I also have reactivated Epstein Barr and Mycoplasma is also suspected. I also have gallstones and fatty liver found on an ultrasound. They said the fatty liver was due to the gallstones. I am not sure if this puts even more burden on my liver in terms of detoxing. I also have methyl issues which can also cause brain fog. It feels hopeless in a way trying to pin down what could be the cause.

I had another lyme patient tell me they suspected their fog was due to babesia also. I am just starting treatment now so i guess i will see how things go. I am trying to go 100 percent Paleo. I am just having a hard time letting go of coffee and sweets seems i have such a sweet tooth.

 

[wastwater]

I'm not a lymie as far as I know.
I think this sensation is due to microglial activation.
I nickname it syrup brain,but I usually feel wired at the same time so tired and wired also fit.
I've never been free of it although antidepressants and vitamin D help a bit.

 

[Research 1st]

I think PWME + 'CFS' have Lyme like disease, but not natural Lyme from tick bites, something far more pathogenic leading to autoimmunity from HERV activation.

It also would seem possible that ME is neuroinvasive variant of the disease inside inflammatory CFS (the type Dr Montoya studies). Possibly inflammatory CFS is the disease stage before the blood brain barrier is penetrated by pathogens (or HERV's start expressing prions), that either does or doesn't progress into a very severe or fatal subset.

If so this may explain why you can have moderate CFS, yet others decline and go onto develop severe autonomic dysfunction (more than POTS), Neuropathies (nerve damage) or worse.

Although patients report they have CFS without POTS or POTS without CFS, we must observe the following:

There is no blood test for POTS only a sign of postural tachycardia on TILT.
There is no blood test for CFS and patients aren't required to have a TILT test so don't know if they have it.

No one actually know who has what then. The same, frustrating, diagnostic accuracy phenomena also applies to Chronic Lyme and EDS which commonly present with CFS and POTS.

So it won't surprise me to learn that ME (aka Chronic Lyme) is a congenital disease passed on by Mom, and Mom (being infected but having a fully developed immune system when infected (unlike the baby) cannot develop full blown severe or fatal ME (unless she too was latently infected by her own mom (or blood transfusion or STD from husband).

If you ask patients, usually people in their direct blood family or cousins have Autism or MS as well as ME. The parents also tend to have a strange CFS 'light' condition, which is either undiagnosed or explained by 'other' inflammatory diagnoses (rheumatoid arthritis, diabetes, etc).

Again, this may hide the fact that both Mom/Dad and kids all have the same infection, but one that required shared genes, which explains why families, not 'roads' come down with 'CFS'/Chronic Lyme like disease.

Without a reliable, definitive test, we'll never know what is going on and with CBT GET and Fukuda CFS still in place and no appropriate funding levels we really will never know.

That's where brave independent researchers come in. Although in the minority there are brave people who fight for the patients and devote the lives to saving lives, not needing to get to the top echelons of academic institutions by 'towing the line'. (Notice pro biomedical researchers work is either turned down for funding, or given a pittance and only permitted if studying fatigue).

Inside CFS is something quite grotesque, and not just the way it is managed and ignored by people paid to save lies.

A constant spaced out feeling is distressing and disturbing to tolerate, to have this denied by medical professionals or be told there is no way to help you, is even more disturbing.

 

[Effi]

@skyfall I just read sth on @Rebecca2z 's thread about the positive effect of Rituxan on brainfog. So I thought I'd add it here cause it can give us some hope... (thx rebecca for updating us!!)

While I have seen improvements in my energy and fatigue I have to say that what has surprised me and has been the most prominent change in me is the brain fog, this was so debilitating for me and now that I don't have that I can see this is what was sucking the life out of me.

 

[Antares in NYC]

@skyfall
It seems to be caused by Babesia and maybe mold illness / toxicity both of which I have (I have Lyme obviously too but Lyme I don't think causes this). Best affordable treatment might be liposomal artemisinin for Babesia which Klinghardt uses. Artensunate injectable also good for Babesia, I did MMS which made the symptoms much worse (herx, MMS targets Babesia well over other infections) or there are the ILADS guidelines. Mold - get out of it and take binders. Dr Shoemaker - Chlorestyramine or Dr Klinghardt - Chlorella.

Hi JBB,

Just wanted to say I enjoyed your post, but wanted to correct something. You said that Lyme doesn't cause brainfog, but the co-infections. I have to disagree. Lyme, particularly neuroborreliosis, can cause brain fog and lots of cognitive and memory issues.
The usual co-infections also cause brainfog (babesia and bartonella), so if you have more than one TBD, you are getting a compounding effect of bugs and toxins hitting your brain and cns.

Brainfog, memory and cognitive issues are the worst of my symptoms, and I don't have babesia, but have bartonella instead. I saw a doctor last year that thought I may have babesia, so I took a lot of artemisiae- based medicines and supplements, but it made no difference, unfortunately.

In addition to having Lyme and bartonella, I have some really high cytokine numbers, which may affect your brain too. For years I have been looking for something to make the brainfog go away, but unfortunately nothing has helped.

The only time that my brainfog and cognitive issues went away since I fell ill was in 2011, for about a week. I was hospitalized for an unrelated surgery, and while I was there, my mind was clear and free of brainfog. Either the massive amounts of antibiotics or the massive amounts of steroids that injected in me while hospitalized did it. That's my guess. Other than that week, my brainfog has been constant since I became ill. I truly miss who I used to be. I feel like my reality is diffused, unable to tell at times if I'm truly awake or in a dream (nightmare, rather).

I really wish it would go away. It's the worst.

 

[chambers89]

Are you on any treatment currently?

 

[Aerose91]

You're describing exactly depersonalization. I got it immediatly when my ME started and its been my worst symptom ever since. For me is very, very severe. It got this bad from overexertion in the first few months, it did damage to my brain that hasn't budged since. I also just recently found out i have bartonella encephalopathy so it seems like a consistent symptom for us.

I had an EEG which showed slowing and my SPECT shows 9 lobes of hypoperfusion. I also did relatively poorly on a neuro-cognitive test pointing arrows toward the frontal lobe, specifically.

Brain inflammation is definitely an issue with this and i believe it is reversible for you. Once you start the treatment it should start to make some dents then other anti-inflamatory tactics and anti-microgliol activating medications (LDN) may help, too. What everyone has said here seems pretty consistent with what I've read and heard from my doctors.

 

[JBB]

Hi JBB,

Just wanted to say I enjoyed your post, but wanted to correct something. You said that Lyme doesn't cause brainfog, but the co-infections. I have to disagree. Lyme, particularly neuroborreliosis, can cause brain fog and lots of cognitive and memory issues.
The usual co-infections also cause brainfog (babesia and bartonella), so if you have more than one TBD, you are getting a compounding effect of bugs and toxins hitting your brain and cns.

Brainfog, memory and cognitive issues are the worst of my symptoms, and I don't have babesia, but have bartonella instead. I saw a doctor last year that thought I may have babesia, so I took a lot of artemisiae- based medicines and supplements, but it made no difference, unfortunately.

In addition to having Lyme and bartonella, I have some really high cytokine numbers, which may affect your brain too. For years I have been looking for something to make the brainfog go away, but unfortunately nothing has helped.

The only time that my brainfog and cognitive issues went away since I fell ill was in 2011, for about a week. I was hospitalized for an unrelated surgery, and while I was there, my mind was clear and free of brainfog. Either the massive amounts of antibiotics or the massive amounts of steroids that injected in me while hospitalized did it. That's my guess. Other than that week, my brainfog has been constant since I became ill. I truly miss who I used to be. I feel like my reality is diffused, unable to tell at times if I'm truly awake or in a dream (nightmare, rather).

I really wish it would go away. It's the worst.

Sorry I didn't mean that Borrelia by itself can't cause brain fog. I agree it certainly can! I must have not been very clear but perhaps what I meant is that it seems to me that "derealization / depersonalization" are more commonly a Babesia / mold symptom and that this is distinctly different from brain "fog". But sure seems like it's very difficult, to put any particular symptom down to any particular infection as there is so much overlap.

Best wishes,

JBB

 

[Dufresne]

I have wondered if i have candida, but i went on a strict protocol for it for a few weeks and didn't remotely see any improvement. The doctor at the time said if i had it i probably would see a little improvement at least. My lyme doctor suspects lyme, bartonella, and babesia. I also have reactivated Epstein Barr and Mycoplasma is also suspected. I also have gallstones and fatty liver found on an ultrasound. They said the fatty liver was due to the gallstones. I am not sure if this puts even more burden on my liver in terms of detoxing. I also have methyl issues which can also cause brain fog. It feels hopeless in a way trying to pin down what could be the cause.

I had another lyme patient tell me they suspected their fog was due to babesia also. I am just starting treatment now so i guess i will see how things go. I am trying to go 100 percent Paleo. I am just having a hard time letting go of coffee and sweets seems i have such a sweet tooth.

You might try doing the 100% paleo for a while, and use garlic. I'd like to hear what happens. For me it took about a month, and the effect was profound, but you've to be strict. Sugar higher than 50-100g a day is enough to screw up my mental clarity even today. I can get away with a couple pieces of fruit, but only because I've made progress and continue to employ other tricks.

So there are the toxins and then there's the terrain. Have you ever tried alkalizing your system with bicarbonates? Baking soda will do, just don't take it on a full stomach during the acid phase of digestion. If you cut the red meat, sugar and carbs, and then add in some baking soda, you should be able to get a good idea whether terrain factors into your fog. I'm willing to bet it does for just about all of us.

Think of alkalizing as controlling inflammation, it can affect many symptoms from allergies and sensitivities to herxes. So you might make your system more tolerant, reduce symptoms, and treat your brain fog at the same time. Also I've good anecdotal evidence to suggest raising pH can shift away from humoral immunity and toward cellular; the latter of which is likely compromised in ME/CFS/Lyme. If your LLMD is on the money with his/her assessment of babesia, bartonella, and mycoplasma (intracellular infections), then this could really be something for you to focus on.

Lastly take a look at perfusion. Garlic is a good vasodilator, but ginkgo works on the microcirculation which can really be noticed in the brain. The two of them are quite synergistic together. A natural anticoagulant added to the mix can work wonders as well.

I promise you brain fog and tolerance issues will respond to treatment. You just have to keep trying stuff. For me it was the matter of making a breakthrough or two and then things just started to add up from there. I'm not yet well but my brain fog is minimal and I can tolerate most medications. My quality of life is much improved and I'm able to treat my infections now.