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

Brain and nerves
1

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

2

Have you been tested for lupus Hun as they are very similar symptoms to these but also cfs..

I know it must be frustrating as I was ill for many years before I got my diagnosis and nearly drove myself crazy thinking I was mad because doctors didn't have a clue what was wrong with me x

3

Given your lymph node symptoms perhaps you could ask to be tested for Sjogren's Syndrome but I'm afraid to tell you that very many of your symptoms are all too familiar to me and I have had CFS for a long time now.  I have had many symptoms mimicking heart attacks including palpitations, dizzyness etc and heart tests, blood pressure normal though a little low at times.  I really hope that some light will be shed on your condition soon if it is not CFS and something else needs to be found.  If it is CFS though can I suggest that you really need to get as much advice, information and support as possible  to help you cope with these awful symptoms and de-stress as a priority.  This forum seems to be a really good place to start as I've found since I've joined recently.I really hope that things will improve for you soon.   

4

Hi! No it's not lupus Hun. I been in the sun with no problems, no white toes/body parts. Iv had no rashs etc. I have had two flulike symtoms over night twice this year only. Other symptoms I forgot to include was face twitching, mainly my right side and my eye rapid twitch when an attack happens, this is post doxycycline.

I did go to bed super or early last night 9pm and woke up 10 times in the night, over heating, and bathroom break 4 times. Normally I only wake up once a night for bathroom break. neutral

5

What a nightmare you've been through! So sorry for that. Have you gotten a complete blood panel done, as well as other testing that might be appropriate? If so, and it all came back normal, you may have ME/CFS. I say this because your symptoms are very very familiar to me, who've had this illness for several years. Symptoms can vary widely from person to person. Just because you've had a normal body temperature and thyroid, no problems revealed from a heart monitor, etc., doesn't rule out ME/CFS. I, too, had none of these, yet I have the illness. I also wore a heart monitor, and everything came back normal. One thing you don't mention, though, is whether you have fatigue, which worsens after any activity. This is one of the core symptoms of this illness. If you don't have debilitating fatigue, then there may be something else going on. I can relate to so many of your symptoms, including hot showers exacerbating symptoms. This is part of my intolerance of heat, and has actually caused be to pass out a couple of times in the shower. I hope you get the appropriate medical attention from a qualified specialist.

6

Some of your symptoms sound like severe allergic responses, be it envoiramental or a particular food.  Many people with immune type conditions diseases often have allergy problems along with it, so it could be youve more than one problem, be it cfs or other, immunity can be a problem, even candida also due to it.   Anxiety and its affects-symptoms  can go along with not having diagnosis, Did the gp diagnose lyme,s, and tell you the doxy would cure it, l think my gp gave me them for a bladder infection, l dont know much about lyme,s, think its quite rare, but sure lve read its a fairly long standing condition to  get rid of,have you read up on it, lve seen posts on here about it. Mayvbe someone with it will give you info. good luck with getting diagnosis soon   

7

Yes and no to fatique, its hard to explain. Pre-Doxycycline I felt tried but never like I need a nap/must go to sleep now feeling. I have always felt a tad tried in the day. School,work,gym,cut grass etc... but I could always do it all! 

Last year I had no symptom of fatique, just the dizzy/lack of air to breathe, tightness in neck. This year its those symptoms but compounded with all the other stuff, and then ill go into a panic state (because i freak out I cant breathe etc...) I had the rapid heart beating feeling in my spine for a few months thats over now. I was even in the ER and my heart rate 58 but could feel it beating like it was 100 in my spine and it was all mental I guess it went away when I knew I was fine!).

I usually don't feel fatique anymore ONLY after a attack/episode, I never feel tried for no reason.... These panic attacks/throat tightness etc all last over an hour to 3-4 hours max. 

Usually what happens is it all starts when I do something, like walk intto class (happen the last 6 days since school started :-|

cutting grass ON A RIDING LAWNMOWER NOT PUSH

washing car

brining trash in

I was at sams club bought 7 things of water and pushing the cart made me sick/tightness of neck and became tried afterwards.

8

I went to a specialist and they believed I had lyme and I believed I had some co-infection, every symptom matched, and I even had tendinosis in my knee for no reason, I wasnt working out.

I was on a heart monitor and stress test because my heart rate would not go over 125. I would get on the treadmil and couldnt get it over 120-130 I felt dizzy passing out, my doctor thought I had a heart problem. I took the stress test and got my heart rate to 193 no problem. I think it was just MY GOOD DAY.

Yes and no to envoirmental. I notice on cooler days I do fine. But yesterday it was raining and cool I was in class and had a panic attack in class, neck tighten, dizzy, hard to breathe, wanting to pass out etc but no tried until it all went away around 5pm it started at 2:30..

Today it was cloudy until past two hours, and I was fine,  I just got back in from being outside for 30 minutes and feel a tiny tried/eye pressure pain/forehead.

I was fine all winter and even went on a ski trip...

This obly became chronic this March and I was using a heat pad at the chriopractor (not sure if this has something to do with it?heat again?)

I had another "good" day in July it was cloudy/raining and I was able to go out and play airsoft with my dad. I couldnt run (felt a palpation) but I was able to walk fast/move around on the field. Then it started to heat up as the sun came out and cloudy sun rain. Then I got sicker and left.

It has gotten worse all summer like it did last year, and it all cleared up during September.

I feel like I am going to be the first human in a Mr Freeze costume to stay cool.

9

Allergens are at their worst from march to sept oct, but do vary from day to day according to conditions, warm dry windy humid air currents,town centres, rural, even air conditioning,  although allergry problems are often made light of by many, re snuffles, sneezing, sore eyes, l think they can cause a lot more problems than that, including tightness and breathing problems, lve had allergic rhinitus for many years, started march april to sept oct, but more typical than your symptoms, congestion, severe coughing attack where l felt l was choking, as if gravel in throat, breathing in dust, tickly throat and cant stop coughing, drink, inhale steam, odd occasion throw up with it, and its draining. On bad days in town centre traffic l,d gasp in air, l do have breathing probs now from other causes, and this year as been a bad one for me and others, pollutants, l know struggling for breath is disturbing distressing and tiring, gives me a headache and feeling as if my heart is under pressure, and that can cause anxiety. some of  your symtpoms arent that typical, but were all different, some more allergic than l am, l do feel tired after bouts, and can just sit on sofa and fall asleep, but l am older, that adds to it. But have you been tested for allergy or asthma, maybe an inhaler might help when your breathing is laboured. September started, so hope it improves problems for you. 

10

Well, your symptoms are very puzzling. If you don't experience fatigue as a central, definite issue, it's hard to imagine you have ME/CFS. Is there a chance your Lyme disease was never fully eradicated? Of course, everything is made worse by fear or anxiety over your symptoms, which is totally understandable. While pursuing a diagnosis, you might want to do something to de-stress, like learning meditation, yoga (if you're able), listening to music--whatever it takes. Good luck to you!

11

Morning imsolost;.......firstly I would like to clarify, again, that please don't confuse CFS with ME.....they are two Completely different conditions, as is Fibro.............I am thinking along your "eye/face twitches", and am wondering have you seen a Neurologist?......as others say re your Sinuses,some of your symptoms could be secondary to this, but I really feel that Docycline should have helped this problem, as quite a strong anti-biotic????.......The little that I know re Lyme's disease is that it comes from being bitten by a tick (found in certain areas.....mainly in ?England, as it is not a common disease here in Aussie)....I think you will need a Lot more testing to get to the root of your problem.....I presume that you have had a PET/MRI scan to check your body organs?.......the two specialists (other than the infectious disease ) is a Rhuematologist  (although you don't complain of generalized pain....by this I mean...aching, generalized soreness......not the Sharp pain that you describe), and a Neurologist..............and of course you will need to keep researching yourself.........also presuming that you have gone onto many sites, and listed your symptoms, and see what comes back?..........you really have my interest, as nothing really adds up to anything that I know of (yes, some could be panic attacks)....which if this comes on again, have you tried breathing in and out with a paper bag held securely over your mouth....if this stops the episode, then it will be a panic attack, which would also be causing the Tingling/numbness of face and extremities etc........let us know where/how you go from here...................Bron

12

l guess you might have read simular, but worth a read for all, Bronwyn its strange you should say its more common in uk than oz, l,d never ever heard of it till recently, and never met anyone with it in the uk, l actually associated it with usa, but maybe because its tested for and diagnosed more in usa  Agree with what you say about the tingling, when l get breathless l get it in my lips and face, why er always stress slowing breathing down,  . Following is what patient says about lymes.    Joint problems in one or more joints. They most commonly affect the knee joint. The severity of joint problems can range from episodes of mild joint pains, to severe joint inflammation (arthritis) causing a lot of pain. Episodes of joint inflammation last, on average, three months.

Nerve and brain problems. Some affected people develop inflammation to nerves, particularly the nerves around the face. This may cause the nerve to stop working and result in facial weakness.Inflammation of the tissues around the brain (meningitis) and inflammation of the brain (encephalitis) may occur.

Heart problems. Some affected people develop inflammation of the heart (myocarditis)and other heart problems. This may cause symptoms such as dizziness, breathlessness, chest pain and a feeling that your heart is beating in a fast, irregular way (palpitations).

Rash. Several areas of the skin (not where the tick bite occurred) may develop a rash similar to erythema migrans (described above). These 'secondary' rashes tend to be smaller than the original stage one rash. These tend to fade within 3-4 weeks. Occasionally, blue-red nodules called lymphocytomas may develop on the skin, particularly on ear lobes and nipples.

Rarely, other organs such as the eyes, kidneys and liver are affected.

Stage three - persistent (chronic) Lyme disease

This may develop months to years after infection. It may develop after a period of not having any symptoms. A whole range of symptoms have been described in joints, skin, nerves, brain and heart. The brain problems may include mild confusion, and problems with memory, concentration, mood, personality and balance. It occasionally may cause a schizophrenic-like illness. There may be tiredness and joint pains which have been called "post-Lyme syndrome" with symptoms similar to fibromyalgia or chronic fatigue syndrome.

13

Hi, I am acutally from the US. I joined a few sites in the US about this topic but I got no answers/ replies, this forum seemed pretty helpful and I can't believe the amount of replies and help so far. Originally my GP suggested(april after my heart stress test) I see a physiatrist(stress and there was nothing wrong with me), this was in May/June and they said I am fine (stress wise) and told my GP to get a referal to Neurologist acutally but they sent me to internal medicine in july and thats when I got Doxycycline. I have not seen one yet.  The face twitching is a new thing that appeared after the Doxy.

Before I did have a feeling like I could not feel my upper back during a panic attack. I have not had this in months which is good, because it scared me to death.

One thing I forgot to mention was my serotonin levels were low (90) from a 50-250ish scale.

 

14

I was tested for lyme first in April standard western blot(people say this isnt a good test thats why I went and saw internal medicne.)

I asked to look for co-infections and different infections(same time I was put on Doxy). They ran about 5 tests and all came back clean. 

I keep telling them I want a MRI because I think someone could be found in my head neutral

Fibro was ruled out because I only had the knee problem, and thats when I added it up and believed I had lyme diease. I said before in a post, I had cold tingling in my fingers after washing my hands, I also had this once or twice in my left elbow.

Those have been the only joint/muscle pains. I have had no pain in my muscles/joints. Thats whats so strange.

15

Did you actually test positive for Lyme? If so, you might want to get on the Mayo Clinic website for Lyme disease. Apparently, there's such a thing a post-treatment Lyme disease syndrome. I noticed Lynne mentioned this in her post.

16

No I did not.

Western blot test clean

the co-infections tests clean

about 5-6 tests in total including borrelia burgdorferi 

17

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.

18

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

19

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.

20

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