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ME/CFS and Beating the Clock
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My Dr calls me a diagnostic dilemma

Discussion in 'General Symptoms' started by AnkeC, Feb 9, 2014.

  1. AnkeC

    AnkeC

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    I love my GP, I really do. She is the first to admit she hasnt got a clue as to what's wrong with me, but she'll be damned if she'll stop looking. :)

    She keeps sending me to different specialists in the hope that one of them will have that EUREKA moment that has been missing for a fair few years now.

    I've always had energy issues.....being unable to do what my peers did, but I muddled through. From time to time it bothered me enough to check in with Dr's but their solution was usually valium or anti depressants. This went on from about 17 till 35.

    And I have always had digestive issue. IBS if you will.

    Since then I have been getting more and more sensitive to foods, got tired more easily.....and 2 years ago started losing hair, gaining weight, had shocking fatigue and muscle pains.

    My Dr started investigating everything. I am so healthy it's not funny. lol
    At least I know I dont have the major nasties, or strange exotic rarities.

    First specialist diagnosis - I am a highly strung housewife in need of a happy pill...oh yeah, and I have fibromyalgia. Charming.

    Second specialist diagnosis - CFS. Definitely CFS. Yes I know ESR cant be high with CFS but that is what you have anyway. Change diet, take anti depressants and exercise with a physio. Next!

    Third, and most recent, specialist - Unspecified immune disorder,, no wait, sleep disorder, asthma and costochondrosis..... Working with this one. He has potential, but we have to talk some more.

    The few things I do have......

    I wear a pain suit daily. From my shoulders to my toes, I hurt. When I first get up in the morning I have to hold onto things as I literally stagger to the bathroom. It does get better, but after every rest I have to get those muscles going again. Sometimes the pain gets worse in areas. My hands and feet in particular...other times my rib cage wants to strangle me.

    I am tired. I dont sleep exceptionally well becuse of the pain, and I dont wake rested. I have found however that if I take a sleeping tablet that not only do I sleep better, but I hurt less in the mornings. I assume that may be a muscle relaxant thing?

    I itch. All over. It drives me nuts. Sometimes it gets so bad it turns into hives, but mostly not. I have burning welts on my cheeks....red and hot like a chemical burn. Very unpleasant. My eyes swell and get gritty. All these are allergic symptoms, but what i may be allergic to I have no idea. I take mass amounts of anti histamines.

    I am losing my hair still. (not to mention my marbles)

    Labs .....
    Eratic B12 - Sky high after an injection, 6 weeks later down low low.

    Elevated CRP - not hugely around low 20's

    Elevated ESR - again not huge at 48

    My IgG is down at times, but not always

    Blood pressure is high when it was always low

    Iron is high

    I think my DHEAS is on the low side, still having trouble figuring that one out.


    What I have found helpful are a very strange combination of things.....

    As I said, sleeping tablets help first thing in the morning. I move much easier and my mood is lighter because of it.

    Powerade. The isotonic sports drink. I kno it's nuts and I dont even like them, but some days (many days actually) I can be lying on the couch barely motivated to move because of pain and brain fog, when one or two bottles of Powerade can have me up and doing things within 30 minutes. It's crazy. I looked at the ingredients...salt, sugar, two potassiums. But y potassium levels are fine according to blood tests. I dont get it.
    It doesnt fix me. I still hurt and everything but it makes things better. No idea why.

    Pain wise I combine paracetamol and ibuprofen and a smidge of caffeine. Since I react terrible to anything stronger I try to make do with these for pain. Except that my present specialist has me trying Fentanyl Transdermal patches atm, and I really dont like them.

    Eating lots of small meal for energy. Probably another reason I've put on weight. I try to keep it healthy but I fade if I dont eat every couple of hours. I am still sure that this is a malabsorption issue.....biut how to prove it is the question. My gut has been tested back to front, and is fine.

    Not sure if I expect you guys to have any answers, you all have your own battles to fight. But thanks for listening anyway......I get so frustrated. Crying a lot these days. Just want a break, you know? I'd like to play with my kids, socialise with friends, or heavens forbid, do some work.
    justy likes this.
  2. SickOfSickness

    SickOfSickness Senior Member

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    I'm glad you're writing here, because we understand.

    Have you tried other drinks besides Powerade and none work?

    I hope you get lucky and get a good specialist one of these times.
    AnkeC likes this.
  3. SOC

    SOC Moderator and Senior Member

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    It sounds like you need to see a top medical (not psych, avoid those like the plague!) ME/CFS specialist. You've done all the basic stuff your GP is likely to be able to handle, but you haven't done a lot of the treatments that improve quality of life for people with ME/CFS -- OI treatments, abx, antivirals, immune treatments, and others.

    Some of the specialists are willing to work with a cooperative GP so you would only have to see the specialist once a year or so. If your GP is really cooperative, you might be able to see the specialist only once to get a definite diagnosis, full testing, and a treatment plan which a supportive GP could follow up with.

    If you let us know what country you are in, someone might be able to suggest a specialist.
  4. Martial

    Martial Senior Member

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    @AnkeC

    It seems to be a running theme here recently with all the messages I have gotten for help so I will ask, have you ever been tested for lyme and co infections? That could be a possible source of what is going on.... Definitely if you do get tested try to go through IgeneX labs. They are one of the very few which will run full co infections and give you the most accurate answer.. From there if you do all that you need is a bacterial protocol treatment, but be aware it takes TIME to clear out a total body spread infection... Sometimes years but at least there is recovery!

    You also mentioned b12 issues but what you mentioned is a result of skewed testing.. B12 levels will always be significantly high like in the 2,000s directly after a shot... This does not mean your body is actively using that much of it, its just showing the levels of injected b12. You mentioned it being low shortly after.. It could be that you were severely deficient and that takes a good few months to really build back up, and this is using multiple injections a week. How many injections were you getting? And for how long were you getting them?

    ideal b12 levels should be over 1000 and what is diagnostically considered low is actually pretty severely deficient anything lower then 500 and you could start seeing symptoms of b12 deficiency.

    Try and get at least two b12 injections a week for at least two months and see what happens, also make sure it is Methyl b12 do not take cyano that is toxic!

    edit* like Idie said under me do Freddd's protocol, this is what will give you the most healing its a combo of methyl b12, ado b12, methyl folate, and L carnatine. You also need to eat a bunch of potassium while doing this to keep up the demand for cellular production, also recently note worthy is to add a supplement of NT factor; these are phospholipids that new cells depend on for nutrition and growth..

    Have you ever had your thyroid checked? Auto Immune panel? and a basic hormonal panel?

    The mal absorption could be the result of tapeworm or parasite infection.. this could explain if you are having deficiencies although eating a normal and healthy diet.. Eating for two can do that to you lol
    Last edited: Feb 9, 2014
    AnkeC and justy like this.
  5. Idie

    Idie

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    Hello,

    For what it is worth, you sound exactly like me 5 years ago. I had all of these issues for 10 years but am doing quite well since I figured out I had B12 deficiency of the tissues. All of the testing never showed this. I took a leap of faith from Fredd (on the B12 forum on this site) and it changed my life. Think of it this way---the testing is poor, the blood serum ranges of B12 are too large (you could shoot a cannon through those values and miss it), the dosing of B12 is wrong and the type of B12 used today (cynacobalamin) is the worst kind to use. How could one get the right diagnosis with all those things wrong. I used the protocol found on this forum and talked everyday to those who have gone this path before me. It saved my life and gave me back quality of life. I would encourage you to go over to the B12 forum on this site. You could be much better in just a few months. Good Luck.

    Idie
    AnkeC likes this.
  6. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Some people don't feel good unless their blood potassium is in the upper part of the 'normal' range.

    If you are concerned about the sugar in the Powerade, you can make your own electrolyte solution with water, powdered potassium, and salt. A little sugar is said to help absorption of the minerals. I use a little fruit juice. You might also want to add some magnesium powder.
    AnkeC likes this.
  7. AnkeC

    AnkeC

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    Hi SickOfSickness, no I havent tried any others. Not even sure why I tried these in the first place, I think my husband must have brought some home, and it just happened to be there.
  8. AnkeC

    AnkeC

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    Hi SOC, thanks for taking the time to comment.

    I didnt go into a lot of detail in my post, I guess I'd still be writing and didnt want people to lose interest.

    My new specialist is talking about IvIg treatments, but first he wanted to investigate some sleep/respiratory issues he was suspecting. I am on antivirals, and antibiotics make me horribly sick.

    Since I am not even sure if ME/CFS is a diagnosis for me, we have been looking towards General Physicians (not sure what they are called in other countries, but they are essentially diagnostic specialists).

    I expect once we settle on a treatment plan that my GP will take over for the most part and that the specialist has his/her input a few times a year.
  9. SOC

    SOC Moderator and Senior Member

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    Ah, I see. :) Sounds like you have a pretty good situation going there, if anything about ME/CFS can be called a "good situation". ;)
    AnkeC likes this.
  10. AnkeC

    AnkeC

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    Hi Martial,

    I havent do the full blown Lyme testing, we did however check (I just know I am about to get this wrong) my CD57 levels, which apparently are an indication that more testing is a good idea. Anyway, they were the opposite of what i needed to be suspicious of lyme.

    With the B12, I started a few years ago on weekly injections for 4 weeks, then monthly for 4 months. Then stopped.
    I think the wisdom behind that was that that should have stocked up my reserves.
    Then, I am not sure how many months passed, it had dropped through the floor again and Dr said we'll have to keep it up monthly because I am obviously not storing it. I take methyl B12 supplements, but I have no control over what they use in the injections.

    I did look at Fredd's protocol which is how I started on this whole testing journey.

    Right now I am waiting on test results for "active B12" that the specialist ordered. Fingers crossed that will shed some light.

    Thyroid - All fabulous
    Immue panel + subclass - IgG a bit low, specifically Ig2
    Hormones - Sex hormoes fine, stress hormones I think DHEAS is low but ex-Dr.No2 doesnt agree. I am at the lower end of the range which really is more for women of 70+, not 45. But since it falls into the normal ramge...*shrugs*
    Parasites etc - check

    Blood pressure is still going nuts, even now with meds to lower it. I am reasonably sure I should be resting on the couch and it be 173/101.

    I have had so many tests done, I am not even entirely sure what some of them were for. It's all very much a foreign language to me, so please bear with me if I have left something important out, or just 'dont get it:.
    Last edited: Feb 13, 2014
  11. AnkeC

    AnkeC

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    Thank you Idie,
    I really wanted to start on the protocol, but there was so much I didnt/dont understand. And because my body reacts so stupidly to so many things I wanted to find a professional to help me. Of course the "professionals" have their own way of doing things which was then nothing like the protocol and I got disheartened again.

    I'll definitely join the B12 forum though. Thanks
  12. Martial

    Martial Senior Member

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    Hey AnkeC it sounds like you were just not getting enough injections and not for nearly as long as you should have for one thing.. once a week injection for four weeks and for only four months just doesn't cut it for certain people with very low levels..

    I thought I had possibly had deficient b12 and my doctors never tested me for it, no matter how many times I requested even had multiple E.R. visits.. I had severe fatigue, neuropathic pain, weird issues with balance, and vision, hallucinations, amnesia, and dementia type feelings.. I did later find out I had lyme but never got the b12 levels tested.. regardless I did not want to wait around and risk permanent damage due to a medical community that refused to test me..

    I went out and got several shots a week, at first starting 1,000mg every other day for a month, then three times a week, then two.. all the while using lozenges between shots..

    It takes a good while to fully recover from issues of low b12, some people don't feel better for up to a year, or get worsening neurological pains and hyper pain sensitivity while starting treatment.. Thise being due to the nerves waking up again..

    I joined a prenecious anemia forum before to discuss what happened to me and share with others before coming here... Over there I learned that some people simply needed more shots then others to keep adaquete b12 levels in their system..

    Also it seems that the b12 situation was never resolved as you already mentioned having recent low levels still..

    It is possible that all of your symptoms are from b12 deficiency and you never really got the chance to treat it right to know so..

    Rather then wait for more test results and the like from doctors I would just firmly state that you want more shots then you have recieved.. In one of the medical journals for scotland it says that patients with low b12 with neuro symptoms should be getting at least every other day shots for at least a month, then three times a week for several months there after.. Had you been using folate supplements alongside the b12? If not then that would explain continued low levels as well... Most people with b12 deficiency are also folate deficient and if there is no folate for the b12 to bind with then you are getting about 2% of what those shots are really worth.. You need to supplement both folate and b12 together to properly restore good levels.. Now obviously you mentioned not having abnormal blood tests so folate may not be a problem.. Being folate and b12 deficient together usually presents itself as anemia on blood tests (Very low RBC count)

    In any case the best thing to do is get more adequete b12 shots and to also supplement it with folate for absorbtion and cellular bio availability..

    I also know you mentioned your doctors not giving you a choice on the type of b12..

    I also had the same issue where most places I went only offered cyano b12, I however did a bunch of googling and called local places that offered shots.. these even included wellness stores, weight loss clinics, dermatologists, plastic surgeons, chiropractors, or anyone else that offered b12 shots in my area...

    I eventually be friended some nutritionists through my efforts and can routinely get methyl b12 injections at only 8 bucks a shot! You could go the same route as I did and just start googling by writing b12 shots in (area code, or city you live in). See what comes up and do some calls to see what people around you offer, as well as pricing...

    I still currently get b12 shots to help methylation and treatment of my lyme, I think I am way past having b12 deficiency issues at this point lol

    There is also another place you can get methyl b12 online though..

    they offer a shipment offer of injectable methyl b12, though you have to do the injections yourself... Easy to do though as its done with a small insulin needle and your doctor would obviously show you how to inject yourself as well if you asked, and give a prescription for the needles needed to do so!

    here is a link to the site!

    http://www.trimnutrition.com/

    I think last time I talked to her they offered a one month supply of b12 at 100 dollars, but you can always ask for the 25% off sale, just ask if that sale is still available.. I can't remember if this brings the price down to 100 dollars, or lowers it more though...

    The amount you get will cover you for about 10 injections, at twice a week this will last you weeks, FAR more cheap then the charge for regular b12 shots that you would get elsewhere.. Make absolute sure that the methyl b12 bottle does not see sunlight though! methyl b12 that is exposed to sunlight becomes downgraded to hydro b12, also good but not the ideal thing you want! Methyl b12 passes the Blood brain barrier and is the most bio available for of b12 out there, both cyano and hydro have to both be converted to methyl b12 in the body before being utilized..

    I think at this point getting twice weekly methyl b12 shots, you could also use it more daily then that if you can afford... Though along side high doses lozenges would help immensely, combine this with freds protocol of ado b12, L carnatine Fumarate, and Methyl folate and you will also be treating any possible case of chronic illness or disease caused by methylation dysregulation.. It is just a great protocol to be on regardless of whether or not you have CFS/M.E. Do research it and read up before trying that though! A lot of stuff you would need to know! Especially folate deficiency, potassium deficiency and methyl trap!

    Personally I use it for lyme and it helps IMMENSELY!

    Wishing you the best!

    todd

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