16 months and still lost, Not Lyme disease now CFS? I refuse to believe

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All started in April 2014, but was not chronic until March 2015. During September 2014- Feb 2015 they had all disappeared. Prior to all this I used to be 225lbs years ago(2007 I hit 225) before I started working out. During Dec 2013 > April 2014 I was in a weightlifting comp, I went from 129lbs in 2013 summer>170lbs 2014 winter>145lbs spring of 2014.

​Then all my symptoms disappeared when I started to gain more weight in September 2014, I went from 145-185 and all my symptoms started back once I was down into the 160's in March 2015.

I was treated for lyme disease (doxycycline about a month ago and it made all my symptoms better/some went away!) I do not believe I have CFS, reasons are I have had nearly two dozen EKG's since April 2014. I have been into the ER about 15 times this year alone for shortness breathe/chest pains/dizzy etc. Blood pressure/heart rates are always normal there has never been abnormalities in them. Body temperature is in check. Thyroid and adrenal gland functions are all normal. I wore a heart monitor during Aug-Sep 2014 and they found NOTHING.I read if you have CFS, there is problems with heart/blood pressure and thyroid and adrenal gland functions.

Here are ALL my symptoms to date.

Headaches (pressure/fullness in center of head like someone is squeezing a ball (current September 2015). (Pre Doxycycline I had suffered) from knife pains shooting out of my head, like someone stabbing from the inside out.

Ear ringing, filling out and releasing, can last 1-30 minutes.

(Pre Doxycycline) Eye blurry/watery eyes

Face numbness mostly in the sides of the jaw can pinch and not feel it at times.

Face and eye twitching most recently started after the Doxycycline.

Nose/sinus problems very hard to breathe through nose, sometimes I weeze.

Lymph nodes swell up, recently pain shooting out of the nodes like they want to explode/over load.

Tightness in neck, can’t breathe feeling.

Stiff neck, pain in the upper back, stiffness, painful.

Dizzy/light headed from the tightness of neck and nose/sinus problems.

(Pre Doxycycline) heart beating feeling on spine, could feel my heart beating (Post Doxycycline very rare I feel this way.) This would cause me to not fall asleep, for 1-3 hours laying there.

(Pre Doxycycline) Insomnia, have not had Insomnia since July and I was taking melotina and 5-HTP, stopped taking 5-htp it caused 1 panic attack the most serve ever.

Rarely heart palpitations.

Lock jaw feeling, can’t chew/ very hard to move my mouth.

HEAT INTOLERANCES, at the beach I can be fine, but in my own backyard I can flare up just standing/sitting outside for 10-15 minutes.

Hot showers have triggered these symptoms/panic attacks in the past.

Teeth problems

(Pre Doxycycline) Muscle twitching in bicep/quads.

Alcohol in tolerances. 

(Pre/Post Doxycycline) Memory loss/forgot to go to work, very forgetful at times.

(Pre Doxycycline) Bloating in stomach and eating more made me sicker included all the symptoms above (would build up).

(Pre/Post Doxycycline) Throat pain/like someone punching out/ tightness

(Pre Doxycycline and current) Extreme fatigue, current September 2015 not as fatigued but after symptoms build up I am tried/weak a bit sleepy. Sleep sometimes helps the problems but other times it doesn’t.

(Pre/Post Doxycycline) Itching crotch/anal region chronic from April 2014.

(Pre/Post Doxycycline) Tremors/weakness.

Numbness located in, calves, hands, feet, face and arms. (less severe after doxycycline, feels more like they are going to sleep than constant numbness and bloating/expanding feeling)

Bending over/squatting down weakness in legs just from one squat to open cabinet.

(Pre/Post Doxycycline) Near ending the cycle I had cold feeling in my hands when washing with warm/cold water. It would linger for about 15 seconds after washing my hands. Lasted about 15 days after taking Doxy I no longer have it 8/30/2015.

Random sharp pains left and right sides of body by kidney/liver?

(Pre Doxycycline) Random pain (one time it happen) in my chest July 2015 out in the yard (hot day), sharp blade slashing feeling in heart region also notice my calves went ice cold in the yard few minutes after this(never happen again) In August 2015 driving had another sharp pain in chest, like a lightning bolt hit it.

(Pre/Post Doxycycline) ED/random sexual mood swings can be completely dead sexually one minute and next super horny.

(Post Doxycycline) Panic attacks not as severe after Doxycycline. These are very rare now, once or twice a month.

I cannot work now, Panic attacks are less severe and I rarely get them now. I had one in class about a week ago, I had one in July going to the beach. But most of the time it’s not a panic attack I just get the feeling my throat is very tight/can’t breathe and become dizzy. I loose feeling in my arms/limbs (going to sleep feeling sometimes) 2-3 times am onth I wake up in the night and my arms are dead/no blood flow, and I feel like I cant move.

I been experimenting with more food, such as carbs, milk, caffee (Nutella) and symptoms are getting a bit better. I drink on average 50-75oz of water a day. I rarely drink protein shakes anymore. I usually have one with breakfast.

My conclusion, I have some sort of mercury poisoning or parasite in me. I do not see my doctor for another 2 weeks L

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  • Posted

    I found this on web md, what if all these tests come back normal could I still have CFS? has anyone else have had any of these tests and they come back abnormal or normal?

    I am wondering now if I do not have CFS, but maybe some sort of serve case of anxiety and panic attacks ? I went out the other night around 9pm and felt tried and didnt want to go, about 30 minutes later I felt fine and wide awake and stayed up to 1am. Is it possible to snap out of tried spells?

    ~"Complete blood count (CBC). This gives important information about the kinds and numbers of cells in your blood.

    Erythrocyte sedimentation rate (ESR). This test measures how quickly red blood cells (erythrocytes) settle in a test tube. This tells whether or not certain types of inflammation are present.

    Blood glucose level, used to check for diabetes.

    Thyroid-stimulating hormone test. It's used to find problems that affect the thyroid gland.

    Chemistry panel. This is a blood test that provides information about your general state of health.

    Urinalysis, a urine test that can provide information about your overall health and clues to many conditions."~

     

    • Posted

      Morning imsolost;   yes, these are the normal tests taken, and I would say ALL  of us have had them done, and they come back Normal.....then that is why they tell us it is Fibro, as nothinng else shows up negatviely......if the TSH comes back elevated, this tells us that our Thyroid is not working to it;s optimum level....and ?may need to take some Thyroxin.............so how did your bloods /urine etc come back?.....Bron
    • Posted

      morning; if you havn't had any of these tests, (even FBC and ESR), how come they have given you diagnosis ?   or have you not seen a GP yet? If if you havn't even seen a doctor of any sort, this is where you should be going first, to have some testing for whatever is ?the cause of your symptoms????................Bron
    • Posted

      I saw my GP on the 15th and he said I have CFS (what internal medicicne said) They just put that label on me.
    • Posted

      Hi again,

      Seems that the improvement has had a slide? I'm sorry if that's the case. Re cfs/me and the worry this is something else, I hope that you get the results you need. If it is cfs and nothing else, from my own and a friends experience, anxiety and panic attack symptoms are part of that. Having a decrease in lifting ability is part of that too. Our brains are wired to seek answers and it seems you, like many others with cfs, are finding it hard having no answers, which Is also part of it.

      Let us know if you have the extra tests and what the results are? Its hard going through all this but, hopefully it will give peace of mind. Try to stay calm and be gentle with yourself.

      Best wishes

      B

  • Posted

    Hello, this is coming from left field, I'm sure, but have you taken antidepressents or benzos?  If so, any changes in dosage or discontinuation?  Many of these symptoms match AD/benzo withdrawal symptoms, which can last months and years after stopping.  I stopped taking an AD last year and didn't realize that the crazy symptoms I had, including panic/feelings of doom like I had never experienced before, were related to stopping because they didn't come on strong until a few months after I had stopped.  
    • Posted

      I am not on  antidepressents or benzos. I also do not have any muslce pain or joint pain. Thats why I ask these test and maybe it is not cfs?
  • Posted

    I am just wondering if its not something else, the past few weeks I hardly any push ups.

    Mostly bicep, tricep and medicine ball I have at the house. 

    I started doing push ups again and it triggers the symtoms lightly, tight throat, light headed, the upper back pain and discomfort, slight numbness throughout my forearms.

    Is it possible I am pinching something off and maybe not CFS?

    • Posted

      Evening imsolost;   there are 2 things (maybe 3) that I am sure that you need to do.............firstly, get your GP to order all tests that are the primary tests needed to rule out everything else; secondly, start trialling some meds (eg, a small dose of Amitriptiylline, and see if this stops the pains that you describe) and thirdly, to help you through your anxiety, make a couple of appointments with a psychologist, and talk re ALL of your feelings, and ask for their opinion on what you are feeling.....I have been and found their opinions and advice very helpful............good luck Bron

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