The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Discussion in 'General ME/CFS Discussion' started by cman89, Oct 18, 2014.

  1. cman89

    cman89 Senior Member

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    Hayden, Idaho
    Howdy ya'll. i generally post here both for myself and on behalf of my mother, who has me/cfs/fibro, but is not active on the boards. This one however, is strictly for me. I want to start by listing my medical past and current situation, and then ask for advice on further steps. Here goes:

    I was for all intents and purposes healthy until age 19 when I, through the course of 5 or so months, developed intestinal problems, altered my diet (unwittingly cutting out lots of calories) starting losing weight (not good. I was five ten 133 lbs at the beginning) and developed disturbed sleep patterns. The combination of weight loss, poor digestion, and lack of sleep led to some psych symptoms, and I became concerned that I had a laundry list of very serious illnesses. I ended up in the hospital, started getting proper nutrition again, and finally began sleeping through the night.

    A year later I was about 80 percent recovered, with lingering gut issues and a reduction in muscular endurance. (I got stronger though, which was probably a result of more body weight due to an altered metabolism). I shunned doctors for four years until this last May, when I began having strange neuro symptoms, including tingling in my hands and light sensitivity. This continued, and I started having problems with brain fog and an overall tiredness. I was sleeping quite a bit, but it was restorative and uninterrupted.

    MS was ruled out and after being treated with Augmentin antibiotic for supposed chronic sinusitis I actually started feeling much better. I was more clear headed and energetic, until I crashed. The emotional stress of a breakup took my vulnerable system and pushed me off a cliff. Now I was dealing with both the physical stress of the (possible) infection, and emotional stress of the trauma. I spent two weeks at least in a state of major insomnia plus feeling exhausted and at the same time wired during the day. It was like a 14 day speed trip. Thankfully, a combination of valerian and melatonin gave me some sleep back, and most nights I sleep ok and for good duration.

    I began suspecting a possible CFS like condition, but when many of my symptoms normalized, I realized that I really don't have sever symptoms as some of you describe. However, I have been keenly interested in treatment approaches for CFS, as I feel I could greatly benefit. I struggle mostly with tiredness , fatigue, and muscle weakness. Brain fog is mostly gone, no headaches, no pain, mild PEM, but not bad.

    I also have varying blood pressure, and my heartrate seems to jump upon initial exertion, stabilize, then I tire. I can engage in a fair amount of physical activity, but the top end for endurance and strength is very reduced by my standards. I have taken a break from seeing doctors, but I am ready to tackle this issue again. I have tried a basic methylation trial, after much study, and saw mild improvement, but nothing like a setback, and not amazing results either. Do I even have anything remotely close to ME/CFS? And how owuld you proceed with the medical end of things?
     
  2. cman89

    cman89 Senior Member

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    Hayden, Idaho
    I would like to add that I suspected Lyme disease back in june, and was helped greatly by antibiotics, but I never had joint pain. Also, my symptoms pre emotional crash were much more in line with a bacterial infection, wheras now, I have some funky heart rate and muscular stuff going on, as well as possible hormone issues and bp problems. I can exercise and even lift weights, at a reduced level, but I do not seem to be adapting in fitness or getting any muscle growth. After 2 or 3 days of exertion, I have to back off a bit, but it is nowhere near being bedridden or in pain. Just especially wiped out.
     
  3. *GG*

    *GG* Senior Member

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    @cman89

    Can you break this up to make it easier to read? thanks in advance!

    GG

     
    SDSue and minkeygirl like this.
  4. Martial

    Martial Senior Member

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    Personally my opinion, based on your location I think its most likely you and your mom could be dealing with Lyme disease. All your symptoms now are still very common of lyme. If you talk with other chronic lyme sufferers they have the same exact symptoms as well. Lyme in that stage also closely mimics other causes of CFS, and many, many other conditions. My friend has all the symptoms of ALS and just got a dirty EMG result where the doctor suspected ALS. Hes only 23 and hes been in the same state of ill health for 8 years. Obviously if it was ALS he would be fully paralyzed or dead. Anyways I would take a more serious follow up with a lyme literate doctor and see what they say. Get tested through IgeneX labs its the only place accurate enough to make worth while. Some people on this board still find chronic lyme a very controversial condition, I myself say it can be taken advantage of by some doctors. However it is still a very real thing and is important to thoroughly treat. My only stance is the danger of seriously prolonged antibiotics alone with no other options taken or thought about, there is more to it then trying to nuke bacteria out of your system.

    It may not be lyme disease for you and or your mother as well. Based on your location and some of the things you mention though it just sounds very, very likely. It would definitely be worth while to investigate that before looking into more expensive testing, also not staying tunnel visioned on just lyme though. It often comes with a myriad of co infections, parasites, and a dysregulated immune system from chronic infection can cause other issues. You have to treat whatever this is with a full body approach. You already mentioned methylation treatment which is a huge part. Other things that could make you more sick are things like toxic mold, food sensitivies, candida, gut dysbiosis, chemical irritants in the environment, nutritional deficiencies, etc..


    I would err on the side of caution on long term antibiotic use though, especially hearing you already have gut issues. If you did come back with more indicative results of Lyme you would probably want to try a natural approach with wide spectrum anti microbials, among other things. I have talked to many, many patients and the results with extended antibiotic use are not that great. It also comes with its own set of large risks as well. It is as important to de toxify the dead bacteria lower as it is to kill it. Most the infections are made of endo toxins. If it gets released it will irritate the system wherever bacteria dies. I am not completely against the use of pharm grade antibiotics but it definitely feels as if it shouldn't always be the first option.


    hope this all helps!
     
    Last edited: Oct 18, 2014
    jepps likes this.
  5. jepps

    jepps Senior Member

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    I agree to Martial, and would take abx only als last option. As you have gut issues, I would first address gut with diet and probiotics, prebiotics and RS. Lyme is only one infection, with gut issues, you could also have fungi and other infections. Chris Kresser has a good guide for addressing the gut. If you have SIBO, you must first address SIBO with a special diet and herbals for SIBO. If SIBO is not overlapping, you could first address fungi with another special diet and herbals for fungi and parasites.
    The next step is to address methylation, when the gut is in balance.

    Regards, jepps
     
    Last edited: Oct 19, 2014
  6. Sea

    Sea Senior Member

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    Also, look at B12 deficiency. Even if you didn't start there it can develop with gut problems even if you have enough in your diet. The tingling, light sensitivity and fatigue are all on the symptom list of B12 deficiency though they can all have other explanations as well.
     
  7. cman89

    cman89 Senior Member

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    Hayden, Idaho
    Earlier in the summer I was almost sure I had Lyme. In fact it all started when I got back from camping trip. Not to mention, I had relief when treated with Augmentin. I would not even be on this forum if it were not for the crash I experienced due to emotional trauma in August. I was putting emotional problems on top of an already vulnerable body. Now, the Lyme I hear most people dealing with includes joint pain and flu like symptoms, bot of which I have not experienced, so I still remain a bit skeptical. Did your buddy have the flu/joint pain stuff?
     
  8. cman89

    cman89 Senior Member

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    I have a suspicion that the gut stuff created some malabsorption problems that may have tainted my B12 intake. On the other hand, when I crashed, it was due to emotional trauma, and I dont get the b12 connection with that....so
     
  9. xrunner

    xrunner Senior Member

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    See a Lyme literate doctor. Lyme is a difficult one, it's almost never a slam dunk diagnosis. The fact that antibiotics helped can be a clue. Bacterial infections like Lyme, if not eradicated (assuming this is possible with Lyme) can become chronic and then cause a range of symptoms, including those typical of ME/CFS and many others. Best wishes.
     
  10. Sea

    Sea Senior Member

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    I'm not suggesting B12 is the only problem or the complete answer, but it is worth considering. Google B12 and depression and you will find many references to a correlation between the two. When we are undergoing stress is often when deficiencies become obvious - we need more and it isn't there.
     
  11. cman89

    cman89 Senior Member

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    Hayden, Idaho
    I have a high suspicion that the emotional stress may have been an open door for Lyme stuff to jump right back in the game and cause problems. However, my symptoms now are different in a lot of ways than when i was just battling the initial (supposed ) infection. Some funny cardiac stuff going on that I did not have before the emotional trauma.
     
  12. A.B.

    A.B. Senior Member

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    It doesn't sound like ME/CFS which is good because that means whatever you have might be easily treatable. Keep an open mind and continue ruling out other illnesses. Don't diagnose yourself. That is what I would suggest.
     
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  13. cman89

    cman89 Senior Member

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    Hayden, Idaho
    I agree with you on the self doctoring. My main goal right now is to find ways to improve w/o expensive tests or major intervention. i.e. diet, supplement etc...that why I'm here. I also have a mother with diagnosed CFS, and so I post here on her behalf as well
     
  14. CantThink

    CantThink Senior Member

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    As you had the emotional trauma, maybe that suppressed your immune system enough for something infectious to reactivate?
     
  15. xrunner

    xrunner Senior Member

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    Hi @cman89
    Intracellular bacterial infections such as Lyme, as time goes by, are known to migrate from the blood dip into tissues and organs with new symptoms likely to show up.
    I'm not suggesting this is definitely your case but, whilst excluding more obvious possible causes of your health problems by seeing appropriate specialists, it would seem prudent to seek an expert opinion on Lyme considering your area and your mum's history.
    In any case I would get your mother thoroughly tested for Lyme and all main co-infections by a Lyme literate doctor as most infectious specialists haven't got a clue about this illness. Lyme is the one illness that nobody wants to underestimate as it can also cause ME and fibromyalgia symptoms. Best wishes.
     
  16. cman89

    cman89 Senior Member

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    Hayden, Idaho
    I am pretty well versed on Lyme, however I got sick beginning in Northern Idaho, which does have ticks, but not as common, and me mum, in San Diego CA, where ticks are also rare. I suspected the Lyme back in June, but I never had flulike symptoms, joint pain, etc... I know that does not rule it out, but I dont want to latch on to one thing too much. I have in the past, and it don't end well. Also, I was treated with augmentin three times, and saw improvement the first two, had an emotional crash, developed new symptoms, treated augmentin a third time, and it made little difference, unlike the first rounds. In fact I would say that pre crash I was healing up quite nicely
     

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