new and question about extreme brain fog

Dear reader,. I feel as if my brain is not working. Disconnected, unable to plan, organize and execute tasks. Often apathic, numb and unable to conversate. The world looks very unfamiliar to me. Feels like permanent drunken state. I dont understand how people can get up dress themselves and go to work. With enormous energy I force myself to rationalize my way through around my family. Everything is 2D. Main diagnosis depression. Every few months suddenly the switch goes on and my brain starts up. I then recognize myself again. Few days later its gone again for months. I dont know how long i can take this. Psychiatry doesnt bring me anything. I have no root causes or issues. Fantastic wife and children.

Lately did bloodtests with new dr.

- low cd57 + nk cells (68) (Lyme was negativ)

- low nk cells % (6)

- high soluble 14 (3550)

- chlam. pn. positiv

IgGi 248 (<22)

IgM 0.1

- different inflammationi markers in blood and gut

- some genetic mthfr issues

Could this be a situation of neuroi psychiatric symptons due to chronic CP alone or combination with false negativ lyme.

I am desperate for answers so i hope to get some feedback on this. Is detox necessary before AB use.

Thank you, Jan

You know you are cpni positive. You need to start treating it.  If your Lyme test is wrong, that's okay, because this protocol will also address Lyme.  Both can cause neurological issues that are misdiagnosed as psychiatric issues.

First, start on Vitamin D3 and N-Acetyl cysteine.  Read Dr. Wheldon's site and ignore the references to multiple sclerosis (you can substitute "cpn infection" every time you see "MSi") .

http://www.davidwheldon.co.uk/ms-treatment.html< 

It sounds like you're in the right place. Welcome!!

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Yes, that sounds like a ton of brain fog, which could easily be from an infection.  As regards the antibody test, IgM antibodies are generated first when you get infected, while IgGi antibodies come later and persist after the infection is cleared.  But Cpni is quite hard to clear, so you probably still have it.

You don't need to do anything before starting antibioticsi, but the recommended supplementsi are a good idea, since they'll calm down the immunei system's overreactions to seeing pieces of dead bacteria killed by the antibiotics.

The first thing that made me sure I was sick was being unable to think straight - I could not read 5 words into a sentence... by word 5 I no longer remembered word 1 and so could get no sense... Lectures were worse but I thought that was the noise originally...

I remember telling my friend who was a counsellor & psychology degree to please get me into a nursing home as I had dementiai!

Athough I was sick enough to fend most of it away there was a suggestion I was suffering from depression.

Like you say it does lift sometimes and you can think and you go "hey that is me - I'm not this slug brain useless thing I'm pretending to be" 

The second time I got CFSi/ME(It had never really gone away just been affecting me less so I could do some normal stuff) they were dead sure I had depression.... the fact I was coughing endlessly from the Whooping cough that exacerbated it was irrelevant!

That is not to say you would not/could not be depressed - as I told one doctor - if you felt like this you WOULD be depressed - just that is not the CAUSE just a piece of the puzzle.

Start getting rid of the Cpni - at the worst you will have one less thing making you feel crap... at best you will get better...  It will take a while and you will have ups and down - but you are not exactly having a fantastic time of it now... 

Started NACi Sept'14... 100mg Doxyi Dec'14...  Roxi 13Dec '14 Supplementsi...

Thank you very much for your reply.

I did some detoxing with pinella burber and tri-fortify.

I now will ask for minocycline. This because is known for antidepressant effct.

At this moment i cant cope daily life. This week i will have to attend a funeral. Problem is i think i cant handle it. I reason with myself why i cant do it bit there is no answer.

I just cant be depressed and let it go. Everything is just to overwelming.

I have to convince myself that it could be caused by chronic cpni to give abxi treatment a chance.

You don't have to convince yourself; you have to treat the disease you know you have.  Everything else becomes easier when you're not sick and fighting a disease.

We all know how much better we feel when we've had the flu and recover.  Recovering from cpni is like that, multiplied by a hundred.  It's kind of wonderful when you get your life back.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Mack,

 

what you say about ’flu is quite true.

 

Years ago, when I worked in Oxford, I kept a boarding-house. (You go through many stages in life, I find.) Actually, it was a fine experience: academics, doctors, philosophers — all lodged with me.

 

In a harsh winter in the late 70’s I was going up Headington Hill on a bus, and the ’flu struck. I was almost poleaxed and got home with great difficulty. Fevered, shivering, I was met at the door by Dr Stevens, an American geographer who was writing a monograph on the voyages of Hakluyt.

 

I’ve never sweated so much. In the middle of the night I thought: I do not care if I survive. If I do not live to see tomorrow I shall not care. And I meant it truly.

 

This is a cytokinei reaction. What you feel is not the pathogen itself, but your reaction to the pathogen. I was fortunate with ’flu.

 

Dr Stevens nursed me well and, after the crisis, bought me revivers of gin-and-tonics from The Seven Bells from time to time.

 

[Most convalescents get a pretty nurse. I got Dr Stevens.]

D W - [Myalgia and hypertension">i (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. No medication now. Morning BP typically 110/75]

Hi John,

The endotoxinsi from this make you feel profoundly unwell and unable to do much other than suffer and wonder why you can't do anything. In my experience when you get on antibioticsi you will start to feel better incrementally but it will take time. What was helpful for me was to imagine myself in God's hand and having him set me softly down where I wanted to land. You have a loving family so perhaps you can visualize a better time in the future with them.

C   

Thank you for your kind answers.

Today starting on minocycline 2x100mg together with the pinella burbon and tri-fortify. 

What can i expect the first days on minocycline?

Keep you informed!!

Hi John,

Everyone responds differently. You may have no response, a favorable or unfavorable response (due to bacteria dying and endotoxinsi). When I first started antibioticsi I had some improvement at 10 days, but I had only been sick for 9 months. It's a long term protocol. You can read about it in the CPNi Handbook. See on top menu. Good Luck to you.

C

Very ill from minocycline after few days. Flu like symptoms.

Worse brain fog, dissociation, unable to think, headache. Feeling brainless.

Going to quit. Will call dr. tomorrow.

John, that sounds as though you are reacting to the minocycline, which is what you want.  Too many people are given antibioticsi for somethinhg then ask for it to be changed because it is making them feel worse, not better.  You should feel worse at first.  When I first started, I was apparently delerious for a week or so, but I don't remember clearly.  One day I woke up clear headed and I was speaking clearly again.  From then on I didn't miss a dose....................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

For the people I know, minocycline (generic Minocin) is one of the easiest to tolerate. Doxycycline seems very hard on many people..and Minocin (stilll under patent) is very effective and has the least reactions. I am sorry to hear you are not tolerating the minocycline...is there any chance it could be doing this because of the combination with other things you are taking? I hope this passes quickly for you. I think that probably if you stop the minocycline it sould stop effecting you within a day..but again, this is just my guess and my experience.  Glad you will stop it for now and call the doctor.

As I now read Sarah's post, she is right...if it were me, I would just fight through it..this can be expected.  But the first time a med hits you this way, it can be very frightening.  In the future, do remember this reaction and understand that it is the effect of the medicine killing the organisms and so it might be unavoidable.  Many people have expressed their unwillingness to "make themselves feel sick" by taking the protocol..but as I look at it, you are sick anyway...and the meds can make you better again. 

Diana, you are wrong: he should carry on.  David as just said that he was at first worried about me seemingly becoming worse but then he realised that I should be since I was having a cytokinei reaction, and my body was was alerted to the infection.  Well, he should have realised but it was difficult seeing me get so ill in the first place.................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

I agree this is to be expected.  People don't believe us when we say 'you will probably feel worse before you feel better'.  The antibioticsi are at war with the disease.  Of course we feel worse.

John, a healthy body doesn't have these kind of reactions to antibiotics.  A sick, infected body does.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

John...I would also look into a natural anti-depressant (a supplement , not a drug)...one of my sons takes 5-HTP and my other son and I take sam-E for several years now...I was told by someone who works with infectious diseasesi that these natural supplementsi work well for people who have stealth infectionsi, because deprsssion goes hand in hand with things like mycoplasma or cPni.  Start low dose if you take one...sam-E is taken in the AM on an empty stomach and 5-HTP is taken at bedtime. you need to find the one which works best for you.   Neither one seems to interfere with protocolsi we are on. 

By the way - the MTHFR genetic issues you speak about also make your natural sam-E levels very low, from what I understand,. I have it as well and one of my sons has two copies of MTHFR

Sarah - this is actually an excellent reminder for me, who this summer began again on the same Stratton Protocol that got my cPni titers way down and helped me regain my health before (in 2006). I had full out health and energy for about 7 years before symptoms began to return. I was re-dxi'd in fall of 2009 and did nothing, because I still felt pretty good.  I did not do as Dr. S recommended, which was take 1200mg NACi for life to keep the elementary bodies from taking hold again.  I was "too busy" looking after other family members.  And, when you feel GREAT, you tend to forget how very sick you had been in the past.

 My main complaint when the cPn returned with a vengeance last year was extreme exhaustion and some fibro and joint pain. I am on three abxi right now...and have been in so much joint and fibromyalgiai pain and so much brain fog for the last few months that I was crying at my doctor's office last month. He told me to stop pushing myself to get on another drug(tinii) and instead back off on my most recent addition amoxicillini), so that I wouldn't suffer so much.  I was going on vacation with my husband and didn't want to disappoint him with not wanting to go, or not being able to participate on hikes thru caves, etc. that I backed off one of the meds. (backing off did not help much) Now that I have been home for a week, I am getting back on the amoxicillin and hopefully in a few weeks, I will try tini, since I am highly allergic to flagyli and never took that the first time.

The moral of this story is that, even our doctors who prescribe the meds for us may not fully understand that we need to do our best to fight thru the sickness we feel in order to come out well on the other side. So when I told John to go to his doctor, that might indeed have been not the best advice...because even my doctor who has been thru this with me before did not tell me to continue.

Thanks for the reactions.

I will try to continue the minocycline at 200mg/day.

What whould be the most used next step in the CAPi protocol.

Addition of Azithromycine 500mg after 2-4 weeks?

And later plaquenil?

Lyme was negative but cant be ruled out.

Hope to hear from you.

Take it slow. Allow yourself to adjust to the Minoi, before you add anything else.

The next step is to make sure you are drinking enough water and taking enough antioxidantsi to flush the dead cpni out of your body, so it doesn't have to work so hard to purge it.  Otherwise, you will re-circulate the garbage and overburden your systems. 

Do not add another antibiotic until you feel you are tolerating this one well.  From your report, you are not ready to add anything else just now.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Thank you for another good advice.

When i read on the forums on this site i see mostly people who have a much broader spectrum of issues or diagnostics. In my case it merely is in the ´head´. Depression, brainfog, cognitive, anxiety...

I dont have issues like MS/ Fibro/ CFSi etc..

Because other treatments did nothing the last years and my blood panel looked like this (first post) my last resort is convincing myself that this could be CPNi

Is there a possibility (see my blood panel) that there could be lyme infection also.

I realize im asking alot but thats my uncertainty and desperation after years of being ill.

John

John, all my life I had 'chronic fatigue' and periods of time when I couldn't think clearly, organize, or make progress on any projects.  Then, it would subside and I would be clear and productive and totally functional. After a particularly stressful summer in 2001, that changed and I developed MSi

This bacteria shows itself in many different diseasesi, but it is treated with the same antibiotic protocol no matter what 'name' you give it.  And the more it grows, the worse you will feel.

Please look up the treatment for Lyme.  You will learn it is usually the same medications we use (sometimes in higher doses, but the same medicines).  It doesn't matter if you have Lyme or if you have cpni; your treatment will be similar.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Hi John,

I was in your shoes untill  beginning of 2015,(send you a PM) Hang on soldier you are on the right place.

Best,

Yes, when I first started the Tinidazole pulses, I could not even tolerate the first pill - dizzy nauseous - you name it. Now do 5 day full pulses - no problem. You will feel better John!

MacIntosh..I so agree...I know of several people with chromic Lyme who used the very same protocl as the cPni protoc0l to get rid of it.

John - I wouldn't worry about whether or not you might have Lyme for the moment.  You know you have Cpni, so I would concentrate on treating that with CAPi.  The same abxi are good for treating both. Just my personal view, but I think CAP is better at helping with Lyme than the protocolsi some Lyme doctors use.

I find that all my symptoms get worse with treatment, before they get better - so it's good to go as slowly as you need to.  You mention burbur, pinella and tri-fortify.  I find them all good and helpful, so I would stick with those.

I've started taking minocycline, after years of taking doxycycline, and I've found mino hits very hard.  If 200mg is too much to tolerate, it's fine to reduce to 100mg until you feel you can increase again.  Better to do that, if it helps you continue.

Stick with it - it's definitely worthwhile!

Neuroi symptoms & many health problems from 1989. NACi+all supps(04/11) CAPi(05/11)

That's true: minocycline is marginally more neuroprotective than doxycycline but it can feel much more aggressive.  You could always opt for doxycycline in place of minocycline to start with then swap back later..........................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

That is what I will do... I started on doxycycline but i do find the sun an issue in Florida and tropical Australia... so I tried some minoi I had left - and it did knock me around a little more... However after i went back to doxy I do feel a bit better(might just be where I am up to)brain fog wise... I've been driving more easily(although only in the middle of the day) recently... 

I have decided to try to use doxy from now until March and then go back to mino... 

Started NACi Sept'14... 100mg Doxyi Dec'14...  Roxi 13Dec '14 Supplementsi...

My psychiatrist keeps insisting that i have depression, and that is what´s causing all my symptoms of depression, anxiety, brainfog, derealization and dissociation. Simple mental tasks as paying bills, phonecalls, childrens homework are often bridge to far. My brain isnt processing the information. Difficult to tell if depression is cause or effect.

He persists in his opinion because for 15 and 20 years i already had 2 episodes of depression lasting ca. 10 months. Cognitive problems were less then. Also because depression runs in family.

Fact is that the last 3 years nothing helped my situation. Tried everything under the sun. Talk therapy, medication, augmentation, supplementsi, RTMS etc.. etc..  In his opinion ECT is what should come next. I did not agree to.

Therefore i hope that chronic CPNi caused or triggered my situation. I have to realize that nobody knows for sure. Many treatments i started hopefull. Just afraid of another dissapointment. 

Try to stay on 100mg minocycline this week and than upping to 200mg.

Can anything being sad about the brain fog clearing. 

ps gratefull for this conversations. They give me strenght to carry on.

John

John - besides everything else, I've had a lifetime of depression. I really do understand everything you've described. Unfortunately, the doctors still know very little about all these bacteria and the impact they can have on us. All the depression has now resolved for me. Yes, it does sometimes crop up again in a bad herx, but I can now tell myself it's just the die-off and the bacteria refusing to go quietly. And I detox loads. You know you have Cpni, so focus on treating that, and try not to worry about everything else for now. Stay ever hopeful!

I hope you are taking all the supplementsi listed in the protocol - including B12 methylcobalamin. They all help.

Oh, and your English is perfect!

Neuroi symptoms & many health problems from 1989. NACi+all supps(04/11) CAPi(05/11)

Hi John

Don't be concerned that your symptoms seem only to be brain-based.  It's perfectly possible that this is still a cpni infection: its symptoms are varied and confusing.

Have a quick look at this page of Paul Jaminet's Perfect Health Diet blog on brain infectionsi. http://perfecthealthdiet.com/2011/07/how-to-recognize-and-fix-a-brain-in...<  He discusses the symptoms of brain infections and thinks CPn is a likely cause.  He recommends this website for those with chronic infections.  Interestingly, he estimates in this blog post (in 2011) that up to 1 in 5 people have some sort of brain infection and I assume his thinking is still the same.  If that's true, I think you're a likely candidate.

You might also be interested in Turhan Canli's TED talk on depression as an infectious disease.  It received quite a lot of attention in the health media: https://www.youtube.com/watch?v=1dD29XHp6CU

I had fatigue, brain fog and depression symptoms for a long while before I developed other symptoms such as muscle twitches, shaking and digestive problems.  I'd never have assumed it was a brain infection: I thought it was all just to do with neurotransmitters and stress and that an antidepressant would be the answer.  I now think it was a brain infection which has recently begun to spread to other areas of my body.

I'm new here too.

I wish you all the best.

H

Comment viewing options

Select your preferred way to display the comments and click "Save settings" to activate your changes.