Saturday, January 11, 2014

2014, what's the plan man?

Well I am writing this post as much for me as I am for you. I need to unmuddle all my thoughts so I can work out what to do next, and writing it out is the easiest way for me.

Since Christmas I have been in misery guts mode, moping around, woe is me and all of that. I had some bad news in regards to my current treatment plan for Lyme which probably meant I would not be able to continue down that path. My Dr had an unfortunate run in with the medical board and they banned him from treating and diagnosing Lyme. I do have enough of my current anti biotics to continue on for a few months, but as I said in my previous post I have had some problems with those medications and so I don’t feel comfortable continuing on without Dr support. It’s just too dangerous for me. I do believe that this mess with my Dr will be resolved in some round about way and I will be able to get back onto some form of treatment, but until then I need a plan ….. there must be other things I can work on in the meantime.

Firstly I think I should review facts. The things I know for sure. I had a serious chemical exposure leading up to my illness, this was confirmed by blood tests. These chemicals are fat soluble and so are hard for the body to eliminate. It is very likely these chemicals are still floating around in my organs and tissues. They cause neurological damage.  So I could be doing more work on that.

What else? Um …. I know that when I moved house a year ago I improved significantly very quickly. I am 99% convinced this was due to getting away from mould at the old place. It was severely water damaged and also had a flat tin roof with no ceiling cavity and apparently these are perfect breeding grounds for mould. I also know that I was tested and have a moderate mould allergy. But, I was never tested to see if I actually have mould in my blood etc. maybe I can investigate such a test. I can certainly look at ways to help remove mould and other mycotoxins from the body.

Hmm, that brings me to the next issue. Detox. I have known all along I have major problem with detox and methylation. I really need some proper testing in this area. There is a functional liver test which look at detox. The reason I haven’t had the test is because they give you caffeine and then the test looks to see how well or how fast you liver processes it. Caffeine is a big no no for me because I have POTS. Basically this means if I have caffeine my heart will go seriously bonkers. Also I know that even a tiny amount of caffeine makes me crash badly (a cup of tea for example) .. this in itself suggests my liver struggles to process it, which is exactly the point of the test. I am thinking maybe I just need to risk the heart thing and prepare to spend a week in bed recovering … I probably really need that test.

What else? Gut problems have always been a major player for me. I have had endoscopies, hydrogen breath tests etc and had some success, but some underlying problem is still a mystery. I haven’t had testing for leaky gut and people have been throwing that term at me for years. I can have a test for that.
the only other thing I can really think of is Amino Acids. I have never had these tested and have always suspected something wired going on there. So that is another test I can have.

Ok, so plan is to get more tests and then try and do some work on detox and gut mostly.

I have been sick 4 years now and it’s interesting that whatever this disease is it is still progressing. Symptoms are ever changing but rarely do I actually feel better, just different. I have more energy and muscle strength now, but way more pain and hot flushed/body temperature disegulation. I never knew there were so many different kinds of nausea and fatigue. As a well person you just think there is one type, but as a sick person who sees this everyday you realize there are many many different versions of these common symptoms. Very interesting, but total shit at the same time!

If anyone has experience with any of these tests or issues then your comments would be appreciated :)


  1. Sorry to hear what happened with your doctor Lee Lee. Our illnesses are so similar. I had such a similar experience as you are having the first 5 years of being ill. It started to turn around about 4 1/2 years. I wonder if the situation with your doctor might end up being a good thing ironically. It sounds like your body is really in need of detoxing. I wonder if getting a load of toxins out would made lyme treatment easier to tolerate.

    This is what I recommend-forget the test that tells you whether or not your body can effectively detox. Assume you can't. I think you might have a similar genotype as I do which is that I can't effectively detox anything nor can my body get rid of infections (thus all the medications I'm on, lol). For methylation issues there is a test that doesn't involve caffeine but I forget the name of it. There are tests that don't involve the use of caffeine. No use in spending a week in bed recovering if you don't have to.

    I think the test for leaky gut would be worthwhile if it will give you some ideas towards treatment.

    I know what you mean about discovering the many types of nausea and fatigue. It's not something I ever wanted to know about, lol.

    There are a couple good books that were recommended by my doctor: "Detoxify or Die" by Sherry Rogers and "Digestive Wellness" by someone (I forget the name). I just pulled the detoxify or die down from my bookshelf because I'm needing to get some toxins out.

    I wonder about some hormone testing since pesticides and mold toxins are knows to wreak havoc with hormones. And endocrine testing? You might have had all these....If I find some good detox remedies I'll pass them along.

    1. oh thanks, I hadnt even thought about endocrine testing etc. I have added it to my list to ask my Dr about :) x

  2. Lee,

    Similar to what you described my son (25yo, sick 12 years) says "every day is spent just trading off one type of pain for another". He also is way better in a new environment (10 weeks in).


    1. Hi Peter, sorry to hear your son has lost so much of his young life :( But very glad to hear that moving has also helped him. Hopefully he will be lucky and continue to improve. Is you son or yourself on facebook? there is a huge community of us sick folk on there :)

  3. Lee, my response comes purely from reading what you've written, which, may I say is very clearly laid out so cognitively you seem ok (mind you, I don't know how long it took you to write or the effort it demanded) :)
    My question is: if you "know" you have probs with detox, then what extra info would you get from the caffeine test? My doctor generally avoids putting his patients through tests that will really make them suffer, if all the clinical signs are there. He will often go straight for a trial of the treatment, and use improvement/changes as confirmation of the diagnosis. It's somewhat like something House would do, but really it's more conservative and kinder to the patient - "first do no harm".
    Like I said, just my thoughts.

  4. Hi Amanda, yes I do agree with what you are saying. My problem is access to a Dr that I trust will give me all the correct info. My Lyme Dr is currently not able to consult with me, and my regular GP is often not forthcoming with the info I need, or will not treat me based on assumptions. So I have to work a lot of stuff out myself, and having the test results would make it a hell of a lot easier for me.

  5. Ah, now I've read cfs/me warriors comment, I think I may have mis-understood. I'm very fluffy headed today! Probably my comment is of no use at all, but I would second the endocrine testing. I have more abnormal hormones than normal ones I think!! And am also on numerous medications for that reason. Without them I definitely feel a lot worse. Good luck!

    1. haha thats ok, and thanks, I will make sure I get my hormones etc checked. I know my DHEA and testosterone where out of whack about a year ago ... but Dr just ignored it. If its still out I will insist he do something! A major daily symptom for me is hot flushes, which wreaks of hormonal imbalance ...

  6. Or male menopause??;)
    Seriously though, testosterone makes a huge difference to me and to Ian, DHEA is really important to keeping calcium in your bones, let alone as a precursor to other hormones. They are definitely worth pursuing.

  7. Hey Lee :-) Arrgghhhh.... How frustrating about your Lyme doc.... I am 3years on treatment for LYme now and I have made a significant recovery!! I am no longer existing and able to walk every day and do some work from home. It's hard sometimes to see the possibility of getting better. I was still get new symptoms two years into treatment, even though some were going too. It takes a long time on treatment before you see major results. There are some natural treatments you can be taking while you are on a break from this doc. I take them myself. IN fact, I am mostly on natural stuff these days, with antibiotics in between. Have a look at Rizol oils and how they are used to treat Lyme. If you get them, be sure to keep the dose very low as they can cause strong herxs. Just take one or two drops a day. YOu could take them for 3 weeks and then have a 3 week break in between. I would say it is all infection causing your symptoms. Although, I'm sure the mold is an issue. Here is a link to the site I get mine from:

    I hope you get support again soon. If it's Lyme, treatment DOES work, it just takes a long time.

    Best of Luck,

    Treya xx

  8. Hi Lee -
    A couple of quick comments as I'm also having a crappy ME day. From the few posts I've just looked at of yours, it sure does sound like a lot of your symptoms are ME/CFS-related. My ME symptoms were also made much worse when I taught for a year in a moldy classroom (it took me some years afterward to realize that). Also, I've been helped a good deal by hormone treatment (just estrogen and testosterone). I did not respond AT ALL to oral hormones, however. I take bioidentical hormone pellets (injected under the skin), which have helped a lot.
    Finally, after having had this disease for seven years, I can say some of my symptoms have slowly changed around over the years. For example, I had problems with irritable bowel syndrome for about a year, then for a couple of years I had very few digestive issues, and now they are back and causing me a lot of problems. Sigh. I think that's just one of the many fun aspects of the disease, unfortunately.
    Hang in there! I do believe we are getting more understanding of this highly frustrating, life-altering illness every day, and there are a lot of people fighting for us. If you haven't seen it, look up a film called "A Canary in a Coal Mine" that a woman suffering from ME is trying to get produced. It's going to be pretty cool.
    Also, my two cents:
    -Keep fighting to find answers and treatments, but maybe try to adjust your thinking that this is a complex illness about which not enough is known, so the treatments you find may not help, or will help only a little. My ME doctor seems to think in terms of gaining a few percentage points of improvement from a lot of different things, rather than trying to find the "one" answer. That way of looking at things has helped keep my outlook more positive and led me to be able to better handle the idea of getting well slowly rather than quickly, as I would obviously much prefer.
    - speaking of doctors, I don't know where you are, but I hope maybe you can find a good ME doctor somewhere to help guide your treatment or at least consult with you. I see Dr. Charles Lapp in Charlotte, NC, who is very good, but there are a number of good doctors -- look for one who focuses heavily on research in ME/CFS.
    Must go, but keep fighting. It must be SO much harder fighting without the support from friends, family, and doctors that we all need. Just know many of us are out here fighting the same fight and suffering from the same symptoms and frustrations! Every day we get closer to a clearer understanding.
    PS I try to keep my footprint off the internet as much as possible for job-related reasons, but I will check back in to your blog...

  9. something is doing this to our nervous system creating fight or flight 24hrs making us exousted tired and all sysmptoms there is a way to reverse this bad energies from us
    one is to surender all to our creator

    2nd is to get PEMF coil or matress like I got 2 months ago
    its called earth pulse which has 8programs I keep all day unde my body at recovery 10 Hrz(this is where ur body cells recharges and keeps ur brain waves at 10hrz (relaxed state) anything above 15hrz is fight state so u want under 15 always i got 30% better due to this which is huge.
    get or nake LEDs lights helps microcirculation and detox with out any pills etctry it i assure u get 30 to 50% better

    i was 24 hrs bed ridden drinking only puree now iam sitting all day and walk a little and occasionally have solid foods , every1 is diffrent in this crap but u will heal

  10. i forgot Lee to send you a link about PEMF, its good frequency
    ME CFIDS etc is bad frequency

    so having BEMER 3000 or any other PEMF is very ideal


    this " Please prove you're not a robot" IS PAIN .....takes 20 trials for me

    this site is for PEMF cheapest outhere sometimes they have half price

    someday when i have saved up from disability i will get BEMER 3000