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

    Almost forgot this important part.... In April 2015 I went to the gym (thought I was getting better) I did side lateral raises and notice a weird pain down my spine, thought I pulled something and forgot about it. Then went and did biceps and started to feel really tried and left. I was feeling really weird, confused, hard to breathe, no tried and a dry mouth. I drove home, I am only 9 minutes from the gym..

    I started to shake/everything bothered me, the radio, the air blowing, my heart felt like it was not beating then it would shoot up and I could feel it. Really confused feeling,no tried but like sleepy wanted to pass out/lack of air?..........

    Called 911 thought I was having a heart attack. They came and took blood pressure and everything and I was fine. I drove home then my parents took me to the ER, and they found nothing with EKG/chest x ray.

    This would be my worse... panic attack? I say on a scale of 1-100 it was a 98. I felt like I was choking and at one point I couldnt breathe for a few seconds. 

    My mouth was really dry at this time too, and raising my arms above my shoulders bothered me really bad, made it much worse, this week I had this same symptom too during a mild panic.

    Possible pinching a nerve? but other days I move my arms around and don't have this problem, I didn't have any problems recently trying it at home and last year.

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    • Posted

      Hi imsolost;   I am really beginning to think that there is something wrong.......and ? a post viral .......I am still feeling that maybe you do need to see a Cardiologist as well as having an MRI (MRI to check that you don't have something wrong with your spine/nervous system), and a Cardiologist to ensure that the virus hasn't affected your heart muscle......even though EKG/ECG maybe fine when presenting ED, maybe an Ecocardigaph and an Holter-tape may show something  (something like a Mitral Valve/Atrial Node  having been damaged)????....however, these are just somethings to think about.....but do go on seeking answers......sometimes an Internal Physician maybe have an answer?.......your symptoms are plenty and affecting many part of your system....so it will take quite a few drs/tests to cover all..............does your GP have Any ideas, as this is where I think I would be starting, asking for referrals, and taking all the tests that you have had done, with you.....some may need to be done again....but it sounds as if you are young and need to have these sorted out..........have you gone on to the Symptom Checker and checked ALL of your symptoms with this, as now I am wondering how you ended up on Fibro Forum, with all of these sypmtoms.....is there something in  Particular that you found that fits here?     Bron
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    • Posted

      Only viral thing I can think of is in Aug 2013 I was getting a pshyical and almost passed out after getting my blood taken. I had a fewer and they did and EKG. A few weeks later when the blood results came back my GP did say I had a virus and thats why my blood levels where off.

      I don't think I can see a Cardiologist for a while. Internal medicine just slapped a label on me as "CFS"(thats why I am here asking real people with this problem) and my GP is going to follow that. It probably wont be till Oct-Nov until I get more testing. I don't see my GP for another 13 days.

      I did do the symptom list checker,

      the top 3 that came for me when I last did it was

      Lyme Diease

      GAD

      and a few heart disorders.

      When I was in the ER in Aug 2014 the doctors did do an ultra sound of my heart and saw nothing wrong, then they ordered the heart monitor to be sure.

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    • Posted

      Hi there imsolost,

      It sounds so scary when these things happen for you and especially when the symptoms seem so baffling. I have cfs/me after a car accident, I have a friend with the same from a virus and someone I know with it and fibromyalgia after a very stressful time in their life. We all have varying symptoms. My friend gets pain sometimes on raising arms and heart feels like Its racing and breathing problems etc on evening and numb arms too. I have a type of positional cardiac arrhythmia I've had for years. If I bend funny sometimes-it brings on superfast heart beat dizziness. It can appear after doing minimal things, sometimes if I cough hard, but, also If I had caffeine. You seem like a very keep fit kind of person-Do you drink energy drinks? Arrhythmia's don't always show on ecg heart monitoring. Mine didn't show as anything more than high heart rate which calmed down when Ihad a bad episode 20 yrs ago. I know its hard having these symptoms and needing an answer, especially when you seem to want be an active person like most of us here. I hope you are able to get an answer soon and although the symptoms are scary, try to stay calm when an episode happens. Also, as you seem seems know some of the triggers that affect you, try to stay clear of them when you have the chance.

      Best wishes

      B

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    • Posted

      No I do not take energy drinks or pre-workouts those are the worst thinks for you,  I had friends try to give me them for free and I always say no. Terrible products!

      Past 3 days I have been on an improvement, able to work out more and not a single panic attack at school..

      I added milk and more carbs into my diet.

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    • Posted

      Hi there,

      That's good to hear re your improvement : ) hope that continues for you. Sometimes people just get better from cfs/me as mysteriously as they got It in the first place! We are all different. Maybe the milk and carbs is what has helped.

      Best wishes

      B

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  • Posted

    Dear imsolost,

    Did you have the bulleyes rash as on what basis did you receive doxycilan?Was it your gp?Nhs Western blott yeild high negatives results. You should not take this as a neagative for lymes, In america the rash gets a lymes diagnosis alone.America is toplab for lymes testing in the world google find it. name sounds like word genie.You need tested privetly most uk lymes patients go abroad or send bloods abroad for testing.As more get a positve lymes result there,when nhs test negative.

    For the american lab to run tests you need a private gp or even your own to sign the form.This is 1st choice for lymes testing lymes uk associations recogmend ald other lymes association in world,cant name names site wont allow it

    there also is online uk blood lab where can post you a kit, included test tubes needles and in a medical boxto ship abroad you pay this site and price includes nurse and doctor referal. to use lab in germany to run lymes and coinfecion test

    Make sure you test all coinfection diseases Ticks carry. Coinfections stop recovery from lymes.

    I think as you say you felt a improvement with antibiotcs,Is sign you have lymes disease and tick coinfection diseases, You need longer treatment.

    the nhs will not give this. Unless your gp would honour the tests from abroad.

    IF You find positves and can afford to go private,there is lymes ilads member in england.,Who will give longterm treatment,. 

    Maybe the blue lnes are migrane related i have googled it. and can not fine anything out. Are you getting pain in your eyes.You could ask gp for referal to a eye hospital specialst.

    or even pop into. A Optician ask about if this is a sign of anything

    kind regards

    elaine

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    • Posted

      Hi, I do not have lyme diease, I was tested twice, once for western blot in april then again in July for co-infections such as Bartonella and a few others. Nothing.  

      --The past 2 weeks, sence around 9/2/2015 I have been getting a lot better but still sick.. I have not had a panic attack in over 10 days. The symptoms do not randomly appear in the day like they used to.

       

      --I saw my GP this week, was given b-12, BP was high for the first time 138 over something I forgot. Normally I am 110 over something

      -- I did have a reaction to sushi this week, I got light-headed along with dizzy and tight throat, I stopped eating and within 20 minutes it all went away. The last time few times I did eat sushi, July 3rd week, July 1st week and June, the symptoms would trigger everything else and lasted 2-4 hours. 

      -- I had class this week, and I had to park far because we had an event on school campus, I got to class and my heart would not stop racing for 11 minutes while sitting down( I timed it....) Then I became super tired during this and almost fell asleep(first time I have ever felt this way) but right after class we ate (part of the event) and I was wide awake again for the rest of the day no problems....

      Those are the only two problems over the past two weeks. But I still cannot workout fully at home and severely limited. Tonight I was able to do 60 push ups intervals of 5 to 10 minute rests. I feel worn out now but still feel a little bit left in me. The last time I did workout this much it brought all my old symptoms on and was terrible. The good part is the tightness of neck and dizziness isn’t here, that was a real killer.

      The blue lines have gone away, they stopped last week.

      Two weeks ago I started to change my diet a little bit more and added in Nutella small amounts every other day and milk daily. 

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    • Posted

      Other thing, I am not affected by heat (anymore/at the moment, its no longer in the 90's but 80's and 60's at night) but once again this all relates to last year, I got better during September (2014) and this year 2015, getting better. I am not sure if its CFS or a super allergy to weather? 
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    • Posted

      I wish you could edit posts, I forgot to add, I started to get better after drinking milk everyday. I have not had milk prior to 9/2/2015 for about 5-7 months. Once in a while for a pie because I was on a diet.
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    • Posted

      Hi again,

      How long were you well for after September 2014? I think the cfs issue is that it is changeable and sometimes hard to pin reasons down? There are another couple of members that have posted elsewhere on here that are affected by the weather where symptoms change for them in relation to high and low pressure. Don't know If that helps? I know its hard when you want to keep fit but, the cfs/me clinic's over here point to taking exercise etc really easy. Glad the milk and carbs seem to still be helping. The other thing with cfs/me seems to be that sensitivity to things seems to be heightened so, maybe you could be becoming intolerant to something in the sushi? Its such a varied and often frustrating condition!

      B

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    • Posted

      Dear Imsolost,

      What Diagnosis have you been given?and nice to hesr from you

      I am glad you are improving and i hope this continues.

      It does sound like cfs as poeple can develope this after a virus or bacterial infection.

      Most do recover over time if the above is the cause

      The 25percent that do not and continue to deterioate  i bet it turns to be lymes nd ts co related diseases

      Its a unpleasant lottery with ticks. As you could get a viurs only like espsin barr or coxsakie And not get lymes and co diseases, As only 10percent ticks carry lymes. Both of these cause me/cfs syptoms, Have you been tested for these? Just listen to you body and dont push

      kind regards

      elaine

       

      .

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    • Posted

      It was September 2014 > March 2015 and the symptoms started daily sence then. In April 2014 around the 3rd week the symptoms appeared, and was on and off during the summer of 2014, it peaked July&Aug and stopped during September 2014. I was fine all winter and had no episodes.
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    • Posted

      Yes I was tested for espsin barr, and a few others. I can look around the house for the paper work from Aug when I got my results. It might take a few days.
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    • Posted

      That's quite amazing that it does seem to have a bit of a pattern if as you say you are feeling a bit better again and its September. It will be interesting to see if you remain symptom free this winter and if so, what the doctors make of that?

      Are you still feeling ok today?

      B

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    • Posted

      I am still not "better" but able to do more without the symptoms full blast killing me. I cut the grass again today, last time I did was 3 weeks ago and it was nasty. I even popped an allegra before I cut the grass (My GP gave me some) I was fine for a while but then it started to build up from the sun beating down on me, today was 79, but its only 20% of what it used to be 90-95% pain level wise.

      I feel a bit tired and that upper back tingle sensation, but thats it! 

      Last time it was tightness of neck, dizzy, sleepiness etc.

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    • Posted

      Ah, ok. so its improvements that you are noticing more and more at present. Its good that you can see from definite markers (like cutting the grass) and the level of improvement. The diifference seems huge and It sounds really encouraging for you? How are you feeling with the change?

      B

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