1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
New Exercise Study Brings Both Illumination and Questions
Simon McGrath looks at new objective evidence of abnormal response to exercise in ME/CFS patients, and the questions that researchers are still trying to answer ...
Discuss the article on the Forums.

Does brain fog ever go away with treatment?

Discussion in 'General Treatment' started by RedLineBoy, Jul 24, 2013.

  1. RedLineBoy

    RedLineBoy

    Messages:
    80
    Likes:
    14
    Great advise and thanks for all the info you guys provided. I think my major issue is finding the right doc to help me out. I've tried so many doc from good list cfs and none of them were helpful. No one bothers testing in dept except my nautropathic, this guy was great but I can't afford to pay him cash every time I see him. Traditional docs are more busy making rounds then anything else. My insurance is not so good so I have no one of trying different docs.

    I'm only 29 so I can function. At 27 I had enough energy to go back to college so I can finish up my prereqs for Physical Therapy school. I'm still debating between PT or nursing. Anyways, I did one semester by taking chem, anatomy and math. I actually did pretty well. That semester I end up getting straight A's. I felt good and had all the confidence. My short term memory sucked but long term memory was good. It took my a while to get things down but once I had them in long term memory I was gold. I actually end up finishing my exams one time / before everyone else without asking for extra time. So I know if I had my cognitive function I can do well. However this type of motivation wasn't enough to keep me going.

    During my summer break I lost the confidence i once had along with depression that keeps coming back out of the blue. I would feel extremely down and deattached for few days than back to normal. So weird. Therefore at the time I decided to skip school for a while. Fast forward few years later I'm still kicking my self for not finishing college.

    I have no problem with walking, moving, pain, etc Matter of fact I'm a general manager at busy restaurant. I have no problem working 50 hours a week. Cognitive and headaches are the only major symptoms that take a toll on me. If I had none of these issues then I would say I'm symptom free.

    I tried everything to keep me going with my concentration, nothing works. Some days I feel good, some days feel like shit and I can sleep forever.

    My wife does not understand what is that I have going on. So it;s so hard to explain to anyone what I'm going through. I have family members that are doc and their take on cfs is crap. None of them believe its a real disease, what a shame. However, none of them know that i have cfids. I don't even talk about my medical condition with my family member. Just so hard explaining anyone what it is I go through.

    As for POST my neurologist did a test to check for POST but says my bp is good. She would have me lay down and get real fast then measure my pulse.

    I had following test:

    MRI, EKG, EEG, Ear Test, Dizzy Test, full immunological panel test this includes, cd4, nk cell eetc... CBC, Urine, Mycoplasma, Cosakivirus (Sp?), Hep, HIV, CMV and EBV..

    Everything is normal except CMV and EBV. I was given topmax for headaches, it worked for a while.

    So I know what the cause of my cfids is. I was pretty healthy before all this.

    I live in Philly area so if anyone know of a doc that can do in depth work up let me know.
    Anything else?
    Is anyone else going through exact same thing as I am? Cognitive being the only major issue?
    Thank you
     
  2. taniaaust1

    taniaaust1

    Messages:
    8,234
    Likes:
    5,204
    Sth Australia
    You are lucky to be still able to work, many of us with the illness (ME/CFS) cant work at all. My mind fog and memory issues were so severe that at one point I was forgetting not only what common objects were called but also what they looked like and how to use them (so my long term memory at times was going as well).

    I was doing housecleaning jobs for an disability/elderly people agency and my brain was so bad that I had my elderly clients having to constantly instruct me.. I'd vaccum a houses rooms and then forget and 20mins later go to vaccum it again.They actually had to keep telling me what I'd already done and hadnt. If I moved a couple of object, I then couldnt remember where they'd go back. Anyway.. due to my brain and other symptoms of this illness, I cant work. (I'd forget how to use a petrol pump at the servo so couldnt put petrol in my car at times, I'd forgot what "stop" signs were so was driving throu them, so I had to stop driving too).

    All this being said.. there was some things which I did find to help my brain. I'd be in a severe brain issue way still today (instead of having moderate brain issues), if it wasnt for B12 injections (I nowdays take methyl B12 under my tongue). I know you said you dont want to try any more supplements but if you havent tried this.. you really should do so as it does help many of us in some way or another. In my case I had some improvement happening on it within 3 weeks.

    Another thing which has helped my brain is molybdenum supplements (a hair test showed I was deficient in it so I trialed it). After not being able to do maths in my head for YEARS, in 3 days of taking this, I could do maths in my head again (thou only just adding two numbers together but that was a HUGE improvement for me).

    Another thing which has helped my brain is treating my POTS (dysautonomia).. EBV can affect the autonomic system and give someone POTS. You say you'd been tested but from what you said, there was no evidence you had been PROPERLY tested for POTS and the person who did your test may not have known what they were doing. POTS diagnoses is nothing about BP, it is based on how your heart responds to postural change.

    Here's how good POTS testing is done.. its either done by tilt table testing or by a "poor mans" POTS test in a doctors office (or you can do this at home yourself), take care.. many doctors do not properly do the test. Many places which do the proper tilt table testing will say not to drink before the test 2-6 hours no fluid, that can affect ones results as POTS people can be drinking more then normal people do to ward off the POTS. Testing is more sensitive if done in the morning.

    A stable laying heart rate has to be taken (you may need to be laying still for 10 mins to get this).. then one stands immediately up and the HEART RATE is observed if its just POTS one is looking for (BP can show up other issues). The person stands completely still, no toe wiggling or talking for 10-12 mins with the heart rate taken at intervals. An increase of over 30 beats per minute (or the heart rate going to a certain amount.. over 120??) indicates POTS.

    Make sure you have POTS testing done properly.. if you test yourself at home, if you take your pulse using a BP monitor..do make sure your arm is resting at heart level when you are standing (i usually rest my hand at the top of my bedhead).



    [
     
  3. Healthy Someday

    Healthy Someday

    Messages:
    21
    Likes:
    2
    Just want to add that the RN I see for my low testosterone says she has been seeing folks that are still not feeling as good as they should be even with T3, T4, and RT3 in the "normal" range. She has been working with them on Iodine supplementation and is getting good results. She gave me all the info so I can start researching it. I've seen comments here and there about Iodine so I know a little about it.

    Just another FYI.....I sleep while I'm on testosterone supplementation!!!! I actually get a regular, whole night's sleep (like from the FIRST night after getting the pellets). As the testosterone pellets wear off I slip back into crappy sleep. I have friends that are also sleeping better. BUT, just like everything, I also have one friend that is still having a tough time with her sleep. She has had to take meds for a long time to get to sleep and isn't having as good a result as others are. She has had improvement, just not 100%.

    Also, the hormone facility I go to doesn't go by the "standard" range of a sufficient testosterone level. I need to ask next time to see their research about what levels are safe for women because they like a pretty high level and it is quite controversial to keep it a little on the high side.

    I was desperate for help with my symptoms so I kind of jumped on the testosterone band wagon without looking into it too much (VERY unlike me). All I can say is that my friends and I and one of the friends mom have had pellets and are having nothing but positive results. The only negative is the cost. It is really expensive but if you are like me you have thrown so much money down rabbit-holes with practioner after practioner, pill after pill, supplement after supplement, that to finally find something that helps is. . . . glorious!! and worth every single cent!!!!!!!!!!

    Just want to add that I have POTS and the RN says she has one other POTS patient that is having no fatigue with a high dose of testosterone (she's been treating her for years). I'd have to talk to my electrophysiologist about that before I would try a high dose than usual. He should know about the cardiac issues that could result from too much.
     
    maryb likes this.
  4. LisaGoddard

    LisaGoddard Senior Member

    Messages:
    122
    Likes:
    110
    Bless you for looking this up for me!!!!!
    I'll give it a try anyway and get back to the thread with the results.
    Thanks CFS_for_19_years
     
  5. RedLineBoy

    RedLineBoy

    Messages:
    80
    Likes:
    14
    Can you truly go back to your old feeling? I mean the feeling you once had before CFS taking over your life?

    Sometimes, like today I feel normal. No headaches, no cognitive feeling, just good old feeling. It feels great to have this feeling. umm...Let's see how I feel tomorrow.

    Anyone my age?
     
  6. SOC

    SOC Senior Member

    Messages:
    5,364
    Likes:
    6,445
    USA
    In mild forms/stages of ME/CFS, people can feel normal a lot of the time and work full-time. Have you read enough about the illness to understand about relapsing/remitting or PEM?
     
  7. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,690
    Likes:
    10,132
    Amersfoort, Netherlands
    I've had it happen a few times. Most recently it was after pacing for a week or using my heart rate to determine my limitations. Then I had to provoke a semi-crash for a cardiology appointment :p But I'm back to pacing via heart rate again, and hoping to get things back to that point.
     
  8. RedLineBoy

    RedLineBoy

    Messages:
    80
    Likes:
    14
    Do any of you have the blank feeling in your head? Like everything is gray. Say if someone asked you to recall a meeting or what you ate a week ago does it take a while for you to answer?

    I hate this loose blank feeling. I just wanted to know if this is cognitive relative

    Thank you
     
  9. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

    Messages:
    2,684
    Likes:
    2,016
    Midwest, USA
    What I ate a week ago? I usually have not idea and would not recall in any amount of time.
     
  10. Helen

    Helen Senior Member

    Messages:
    571
    Likes:
    584
    Thanks to all of you for interesting information. A friend of mine, also with ME, has been on the Yasko protocol for two years and she tells that all of her brain fog and cognitive problems are gone. They where quite severe before, and had been for years- I could notice her problem too. Unfortunately it is not possible to say what in the Yasko protocol that helped. Maybe the combinations.

    I think the sentence that I marked in blue is very interesting. As Rich Van Konynenburg found in almost everyone of more than 200 Methylation Panels (Health Diagnostics, former Vitamin Diagnostics) that he got from PWME´s, the level of reduced glutathione was decreased. One of the effects of PQQ is shown that it spares reduced glutathione. Could it be one of the positive efffects for us?

    Best,
    Helen

    Is the Antioxidant, Anti-Inflammatory Utative New Vitamin, PQQ, Involved with Nitric Oxide in Bone Metabolism?

    1993, Vol. 29, No. 2 , Pages 153-161
    Paul M. Gallop1,23, Mercedes A. Paz1,2, Rudolf Fluckiger1,2 and Edward Henson1
    1Laboratory of Human Biochemistry, Children's Hospital, 300 Longwood Avenue, Boston, MA, 02155, USA
    2Department of Oral Biology, Harvard School of Dental Medicine, Boston, MA, USA
    3Department of Biological Chemistry, Harvard Medical School, Boston, MA, USA



    Our laboratory recently isolated free PQQ (2,7,9-tricarboxy-pyrroloquinoline quinone, methoxatin), a bacterial redox cofactor, from red cells, neutrophils, serum and milk and found free PQQ in CSF, synovial fluid and bile. The metabolism and functions of PQQ and ascorbate may be coupled. Physiologically, free PQQ catalyzes dioxygensuperoxide interconversion, and participates in both superoxide generation (respiratory burst) and scavenging (cell protection). Using a labeled aromatic o-diamine, superoxide formation by activated neutrophils was inhibited and the labeled phenazine adduct of PQQ could be isolated from the inhibited cells (Karnovsky et al., 1992). PQQ may convert xanthine oxidase to xanthine dehydrogenase (XD) and could be the physiological coenzyme of XD. PQQ plus copper, form a potent amine-oxidizing system. Shah et at., 1992 found that PQQ-Cu2+ catalyzes the oxidation of e-amino groups in collagen and elastin. Rucker's lab (Smidt et al., 1991) has found that PQQ may be a vitamin for mouse pups. Watanabe et at., 1988 and Nishigori et at., 1989, showed that injected PQQ protects animals against oxidative stress injury. PQQ's in vivo antioxidant action, spares reduced glutathione. PQQ, as an actively transported organic anion, concentrates in cells. In other experiments (Aizenman et at., 1992), PQQ protected neurons against the neurotoxin action of the glutatmate-receptor against NMDA. We shall consider possible roles for PQQ in the biosynthesis of nitric oxide (NO, endothelium-derived relaxing factor, EDRF) from L-arginine and in NO removal by superoxide. NO has now been linked to the inhibition of osteoclastic bone resorption.23




    Read More: http://informahealthcare.com/doi/abs/10.3109/03008209309014242
     
  11. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,940
    Likes:
    1,611
    Florida
    This sounds like petite mals. I've read that the ketogenic diet can help these. The reason this diet helps some
    is unknown. Googling petite mals should explain these. I thought I was just "spacey" at times. Lol.

    Personally, I'd slowly eliminate all common intolerances like gluten, dairy, soy, corn, dyes, glutamates (dogtorj has info
    on this), chemicals, etc. Hopefully you'll see an improvement. Then once you've stabilized, add each back to
    see if you react to it.

    Mine lessened dramatically by avoiding gluten but I still get these. Now to avoid these, I eat every 2 - 3 hours. Keep my
    blood glucose up via sugar, dextrose or oj. Or just rest for however long it takes if I'm having a bad one.

    Hth ... Tc .. X

    Ps. I started a thread on pr called "diy pmttt" if you want to see how to do the poor man's tilt table test yourself. You'll want to read what others added so you get a better understanding of how to dx orthostatic intolerance.
     
  12. RedLineBoy

    RedLineBoy

    Messages:
    80
    Likes:
    14
    It can't be absence seizure because I was tested using MRI and EEG ( Electorencephalogram), both of them being negative.

    Electroencephalogram would have detected any abnormal brain activity, this was done about few years ago.
     
  13. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,940
    Likes:
    1,611
    Florida
    I could be wrong but I was told that these tests only pick up what's happening during
    the test. I was scheduled for this test but had to cancel due to poor health but my dr wanted me to come
    off my seizure meds and stay awake all nite in order to trigger a seizure during the test. Even then I was told that it may not happen.

    I know mine are typically from low blood glucose so taking 2 dex4 works most of the time. Have you
    tried ingesting something to raise your bg level ?
     
  14. Sparrowhawk

    Sparrowhawk Senior Member

    Messages:
    454
    Likes:
    236
    West Coast USA
    Please are you able to say what you treated the HHV6 with, for how long, and did the results hold? Thanks!
     
  15. SOC

    SOC Senior Member

    Messages:
    5,364
    Likes:
    6,445
    USA
    I took Valcyte at 1350mg daily for 2 years. My daughter took the same dosage for a few months less. We now take Valtrex to keep EBV and HHV-6 latent. We've been off Valcyte for about 2 years with no return of HHV-6.
     
  16. Sparrowhawk

    Sparrowhawk Senior Member

    Messages:
    454
    Likes:
    236
    West Coast USA
    SOC thank you so much for the quick response.

    And if I could ask a clarifying question, when you say "no return of HHV6" that is based on viral blood counts or on both short and long term antibody levels? I test really high for CTMV, HHV6 and EBV long term antibodies, but I am below the test threshold for all three in blood tests, and the acute antibodies are not showing "current infection" (which I think we here know can be a mis-read).

    Results like yours are very encouraging to me, because while they may not address whatever the root cause is/was of the immune dysfunction, it seems if we knock back the viruses long enough, in some cases that allows the immune system to recover.

    Dr. Kogelnik told me recently that he sees roughly a third of his patients respond really well to at least 6 mos on anitivirals (though too early to say how many such recoveries are 'permanent'), the second group see some improvement but may not hold the improvements, or may hold only a certain level of their previous, and the final third see no change at all--might as well have been taking placebo for all it seemed to do. Which of course, maddeningly, makes us all wonder why such a varied response.

    I was told I'm not quite sick enough to be considered for the pharma antiviral approach, so I'm looking at herbal anti virals as a possible approach.

    Thanks again!
     
  17. SOC

    SOC Senior Member

    Messages:
    5,364
    Likes:
    6,445
    USA
    I don't remember for certain, but I think Dr Lerner did a test beyond the normal antibody test. It was done at Wisconsin Viral Labs, I think. o_O

    Antibody titres don't directly track the level of infection, which makes them a bad measure of treatment. My titres were actually not that high, went higher during Valcyte treatment (probably because my immune system started working better), then went down again. Now they're 3.58 at 1:80 (>1 is positive). Since they're not climbing again, the evaluation is that HHV-6 is not reactivated.

    The big thing, as far as we're concerned, is that we don't have the kind of symptoms we had then -- extreme exhaustion, swollen glands, major cognitive dysfunction.

    For people with immune dysfunction, knocking back the active infection may not be enough. We may need help keeping it latent. Daughter and I take Valtrex in an effort to keep HHV-6 (and other herpesviruses) suppressed.

    What do you mean by "really high for CTMV, HHV6 and EBV long term antibodies, but I am below the test threshold for all three in blood tests"? Do you have numbers? You can have a chronic infection with high long-term antibodies and without acute antibodies. I'm sure Dr Kogelnik knows this. :)
     
  18. Sparrowhawk

    Sparrowhawk Senior Member

    Messages:
    454
    Likes:
    236
    West Coast USA
    Too tired tonight to dig up my numbers but will post them tomorrow. What I meant was that he tested for live viruses in my blood, but for each of the three, I didn't have enough of a viral presence to register on the detection scale. That's when he concluded he would rather see how I did for six months just trying rest and work from home, clean diet, before recommending anything else.

    More tomorrow, sorry, tired and headache now.
     
  19. SOC

    SOC Senior Member

    Messages:
    5,364
    Likes:
    6,445
    USA
    Ah, that's different from antibodies. :) Dr Kogelnik is a good doctor.
     
  20. Sparrowhawk

    Sparrowhawk Senior Member

    Messages:
    454
    Likes:
    236
    West Coast USA
    The blood viral volume test I mentioned is called a Quant Realt Time PCR, and the thresholds for seeing viral load is:
    CTMV <200 cpies/mL
    EBV <200 copies/ mL
    HHV6 <500 copies/ mL
    so I was below all those reference ranges when I tested in May.

    Note that each of these has a dislcaimer that this is a test created by Focus Diagnostics and not cleared or approved by FDA. Whatever that means.

    My CTMV IgG was 3.91
    HHV6 IgG 1.8 (not sure if its the same test but months ago I measured 8.46 and 7.12 in two different tests for HHV6, last November it was 12.58)
    EBV igG 3.41
    EBV anti VCA 4.94 (previously 5.42)

    I haven't been here long enough to know how this compares to other people's numbers, nor even if this is something people commonly share.
     

See more popular forum discussions.

Share This Page