HealthBoards (
-   Lyme Disease (
-   -   Undiagnosed (

goingcrazy8 03-21-2010 03:58 PM

I'm a 29 yr old male who has suffered from a wide range of symptoms for the past year. I have had a wide range of tests with little to no findings. I have been treated for H Pylori and Vitamin D deficiency. I also started taking Lexapro for Anxiety, which has compounded my health issues.

Below is a list of symptoms and tests.

Symptoms - Anxiety,Lightheaded, Stomach Discomfort, Hyperventilation Nausea, Chest Pains, Stiff Neck, TMJ, Derealization.

Tests- Chest x-Ray, MRI Brain & Thoracic, EKG, ECHO, Abdominal CT, Chest CT, Endoscopy and Colonoscopy. I have the run of blood work done as well.

I appreciate all of the feedback.


scout316 03-26-2010 06:40 PM

Re: Undiagnosed
hi "going crazy"

Just wanted to check in and see how you're coming along.Hope your week was better.

I have to check back on your old thread,because I seem to recall that you had trouble breathing off & that right?It could be stress,but also might have to do with the calcium you're taking.Calcium can do that...I've heard that from many people in my family who are on a calcium supplement.

Also you seemed to have felt better when you were on the anti-biotics,right?That could be due to the fact that you might still have a lingering infection somewhere....that is something you can ask your dr. to check for.Did you have allergy tests?Celiac test?If not I would see about getting those tests done.

Back in August I had woke up one morning and felt "different" I wasn't "real" was very lasted all through August,September,October and most of December...then I had a two week long "sinus type" headache and the "brain fog" or dereal;ization just I read that it could've been a "silent migraine" I was having all that time.It scared me,because I thought I was really going crazy....I did have some heart palpitations,but my potassium was at the lowset number for "normal" range....go figure.

You have to be careful even with vitamins...I researched vitamin D and it seems everyone taking it falls back down to their low level when they go off of it and a lot of people got really sick from it.Did you have the 50,000 unit dose once a week at first?That was what most people were given.Some felt better,but then dropped back down when switched to the over the counter 1,000-2,000 dose.A lot of them got severely weak and felt really sick on the high dose too.So confusing..........

Well I think it is different for each individual and my own situation seems to be that my fluctuating hormones are upsetting everything in my endocrine system....forst B12 deficiency,then vitamin A deficiency and now vitamin D my friend Bill here I have a slightly high calcium level I don't really know what the main problem is.

My stomach issues seem to be better since I changed up what I'm eatting.I couldn't tolerate any red it's chicken(I'm allergic to fish)so I cut out most sugar...caffeine I cut out many,many years ago...I never drink alcohol.My dr. thinks IBS,but to me it seems more like IBD(inflammatory bowel disease)...oh I really start to hate all this medical stuff,you know?I think why can't drs. find out what is causing all these symptoms?

I went for the EEG yesterday....nice test...but then I had to wash my hair twice later to get all the paste out....I had to cancel the CT scan,because my husband didn't feel like taking me...he works nights so he has days where he's tired.I'll have to reschedule that much fun when everything evolves around drs. and tests.There's always hope though....always.

It is great to have others to talk to about your health issues,because most of us here can't really talk to our family members about all this...they get tired of hearing about it all and then we feel guilty for feeling the way we do.

I remember when I thought I was a real nut case,but then I started researching all my symptoms(I had like 30 sx...I'm serious!)...I decided that I had "pernicious anemia" dr. said no,you're not anemic.I went to a hematologist and told her my sx and she right away knew I had low level was 278 and considered "low normal",but my MMA was very high which she said was a "hidden" B12 deficiency at the tissue level.So what I learned was that when you know something is wrong with your health you have to keep persisting that the drs. keep testing you and looking for an answer and be your own advocate for your health.It's just too easy for drs. to give out anxiety meds and anti-depressants without really investigating all of the sx.Though I do feel sometimes those meds do help to at least help you function when you are feeling so badly.

take care~~~~hope you have a good weekend~Scout

goingcrazy8 03-29-2010 05:49 AM

Re: Undiagnosed
Hey Scout,

My weekend was good, how about you? I'm still feeling the same, although the nice weather this weekend made me feel a little better. Its strange, but nice weather often make me feel better. You are right that I suffer from shortness of breath sometimes. I often feel as though for no reason at all, I will start to breath very rapidly. I believe this is a combination of hyperventalation and stress. Every day that passes, I start to think more and more that this problem I'm having might just be anxiety. I have to rationalize with myself that all of these tests being negative must mean something. I focus on my thoughts and my non-concious behaviors and make sure they are justified. For instance I often find myself tensing muscles in my stomach and torso non-conciously. I think this causes the tension in my chest and the shortness of breath and chest pains. I'm trying to retrain myself not to do this by paying attention more to this.

With regards to Vitamin D, I never took the large injections. I just take the 1000 IU caplets. I have a dr appt this Friday and they will retest for the deficiency. Hopefully it is better. I'm sure the vitamin D plays a part, but m not sure its the cause of my issues.

I'm glad to hear that your EEG went well. I had the same issue with the glue. When will you have results? Do you exhibit symptoms of seizures and that is why they ordered the test? They ordered mine after my MRI was clean and the dizzy spells.

My stomach issues are still there, but are waning right now in comparison to their peak. Like all of my symptoms, they seem to be cyclical.

Believe me I know what it is like to feel crazy. Just look at my name. At it's peak, my condition caused me to develop agoraphobia. It took me recognizing the fact that my symptoms were brought on by environment change to realize that I had text book agoraphobia. Once I realized I had it, I convinced myself it couldn't hurt me. Over time it went away. I at one point had every symptom in the book. I felt like the oldest 29 yr old in the world. I went to the ER three times thinking I was dying. I put myself through crazy tests. I look at my situation from the outside looking in and wonder what people must think of me. From the outside I look healthy as can be.

Hopefully your results will give you answers.


gjoy 04-01-2010 05:33 AM

Re: Undiagnosed
Hi Going Crazy,

The breathing cramps I experience sound like a bigger version of yours. the start in my stomache and move up to my chest. In the early days my husband called the ambulance because of the chest pain. The cramps has been so intense I can't breathe at all until it subsides. Some times I don't realise it is happening until I start to talk and the words come out like a stutter between the cramping. The osteopath I saw today said ther the muscles connected to the lungs. They were very sore when he touched them. I said are they sore because of the cramping or is the soreness causing the cramping.The million dollar question he thought.

Sounds like your feeling more on top of things. Hope it only gets better from here.


goingcrazy8 04-14-2010 09:02 AM

Re: Undiagnosed
Hey Scout/GJOY!

Sorry I have been so quiet lately, I've been swamped at work. GJOY are you feeling better and better everyday on your antibiotics? I have been about the same. I'm still about 70% back to normal and that last 30% is driving me nuts. Yesterday I had the best day I've had in a long time, but then I don't get much sleep last night and today I find myself getting the dizzy/ short of breath feeling again. The otehr day was driving and for no reason at all started feeling like I couldn't catch my breath.I wish I could put my finger on the trigger. I am weaning off the Lex now, because it's been over 3 months and I think its done its job in helping me recognize what is anxiety and what is the underlying issue. Would love to hear more about the stomach chest cramp theory. I sometimes wonder if mine isn't breathing related and that the dizziness comes on from that and not vice versa. I am about 90% sure that the stomach distress is IBS caused by anxiety, which went away almost entirely when on the anti deppressant. I'm still on the vitamin D with no noticeable change, so I guess that is just a side issue and not the main cause. Any experience with breathing disorders? Could this be a mild form of asthma maybe? allergy? I guess thats the point im at now. GJOY let me know an update and Scout, keep in touch. GoingCrazy8

Anyone else with feedback on breathing disorders as a possibility let me know. I don't wheeze or cough, but I get this feeling like Im breathing into my throat but not my lungs and also get short of breath alot. I have the tight chest muscles(sore to teh touch) also. I always chalked it up to excersing, but maybe not. I've had chest x-rays, but nothing conclusive.

scout316 04-14-2010 02:05 PM

Re: Undiagnosed
well hello goingcrazy

great to hear from you!hmmm...I did read that OTC Vitamin D will not improve the deficiency...only the prescription tablet(50,000 IUs)that you take once a week seemed to help people.Then when their D level improved they were told to take the OTC 1,000-2,000 IUs a day and that did nothing to improve it,but the D level slipped back down again.what to do?what do you think about that?I know that the best way to get adequate D is to go outside in the sun for 10-15 minutes everyday(cloudy days is no help though).Also if you drink milk with added D.Try the Shedd's spread with added calcium & D plus Butternut bread whole grain white with B & D.I also heard that low D causes colon problems...which might be why we have stomach problems...

I just calle my neuro's office...waiting for the nurse to call back...I want to know my EEG results...I'll post as soon as they call and tell me...I'm curious to find out...tired of waiting too....


scout316 04-14-2010 02:08 PM

Re: Undiagnosed
just got the EEG is normal!!!!!!I'm am so happy!The nurse is going to mail me a copy too...finally I can relax about that test result....


goingcrazy8 04-14-2010 07:03 PM

Re: Undiagnosed
Awesome news!!!I'm happy for you. Now what to do???

scout316 04-15-2010 08:08 AM

Re: Undiagnosed
Just not sure where to go from neuro wanted me to have a c-spine MRI,but the places who do it don't have the open MRI...and I will not do a closed way.:confused:

Well I guess I'll just see how I feel...lately I've been sweating a lot,but other than that the only thing I've noticed is that certain things I eat will bring on sx.I can't drink makes me feel funny in my head(weird,huh?)...

Starting to put all my sx together and it still seems to point to the "vagus nerve" I guess I'll have to just sit tight and be aware of what triggers the sx.;)

Hope you transition easily from your lexapro dose being decreased(YAY for you!).Take things slow...try not to feel easy pace in all your day to day activities is best.Whenever I feel afraid I tell myself "It's just fear and nothing is going to happen to me...I'll be fine" helps me a I have a very deep faith that gets me through all the rough places.:)

Have a good day my friend and don't forget to get out in that sun(10-15 minutes)...the best source of vitamin D!


gjoy 04-18-2010 03:33 AM

Re: Undiagnosed
Hi Goingcrazy

I have had such a good afternoon I feel like I want to tell the world. I was gardening today going like a mad thing, weeding and pulling out a large bush, which I had to break all the branches from. Then I proceded to dig out the root.I put in some new plants, dug the holes and carried buckets of water. I only came inside because the family were looking for their tea. The energy I have now is almost boundless. It is such a great feeling. A little while ago I got puffed out scrubbing my sons shoes or using the broom to sweep. What a wonderful feeling having energy is.

The new me is since I started having the antibiotics. I am on my sixth course. This is for the mastoid infection. The first three lots seemed to work well. Luckily my ear was oozing and the doctor took a swab so he eventually got the perfect antibiotic. The fourth course I started going backwards but now with the right one I am feeling much more energetic. I have not had one of the big breathing cramps, only the tightening in my chest. I think my doctor thinks it is not related to the infection but I feel sure it is. I still have a pain in my head occasionally on the right mastoid bone and this still stops me lying down to sleep. Hope I can continue having the antibiotics until it goes away. I am a little afraid they will say that should do it and I will go backwards. I really don't ever want to be where I have been. It has been a nightmare.

I know I have mentioned the sound and light sensitivity. It is a bit better, but not as much as I would have hoped by now. I suppose if I have had a problem for a long time I can't expect it to solve in a few weeks, but I think I have been patient long enough.

I am having bad bloating with the antibiotics. My stomache is feeling like a punching bag. I wonder how long it will tolerate these medicines. As you know I have been on a very restricted diet for about six months. So much for getting my system balanced. I am thinking the fact that I have been so careful for so long with my diet is the only reason I am tolerating them. I have still had quite a lot of nausea. Yesterday was one of those days and I didn't feel like updating. I just felt lousy a lot of the day. I really couldn't work out why but I'm wondering if it was because I had hardly drank anything. I have to make myself drink especially when I am feeling nauseous. I have always been bad at drinking. I don't think I have ever been thirsty, but I know that sometimes I eat when I should drink. This is probably why I put on weight in the past.

Unfortunately I still have that unwell feeling and the strange sensation like I have not long come from the dentist and the injection is wearing off. I am still getting the tingling and numbness. I think the positives out weigh the negatives. Still can't watch tele or listen to music. Still find using the computer difficult, I am sweating as I type. I just get so hot sometimes, always related to sound or light.

How great to have energy. Think I might start training for a marathon. Reckon I would romp it in the way I feel today.

Hope things are still good. I use to have funny feelings when driving, think it was the light. I am hoping to drive again soon after 6 months away from it. I still get very dizzy sometimes, wouldn't want that to happen and hurt someone with my car. My legs are loads better.

Scout I was wondering about the eeg, did anything happen while you were having it that you thought might show? I'm sure you could do the closed MRI. It would be worth any discomfort. I found the operator was very compassionate as I was worried about not being able to breathe which use to happen when I lay on my back. I had the cramps but not extreme. Make up your ming and you will do it.

Goingcrazy you seem to be under so much pressure at work, I wouldn't be surprised if it was making things worse. Is there any way to work it so you are not so pressured? It doesn't help your health.

Keep us updated,


scout316 04-18-2010 10:53 PM

Re: Undiagnosed
hi gjoy

Well I have a sensory disturbance yes I was hoping the EEG would pick that up and I did actually feel like I had it during part of the EEG test.

I'm upset,because they said my EEG was perfectly normal...and it wasn' showed "slowing" I'm confused why they would say it was normal.I don't care for that neurologist...they've made a few mistakes already concerning my health and I'm not happy about it.

I usually post on the brain and nervous system board here..I have a thread called>weakness & strange feeling in head<


gjoy 04-20-2010 01:00 AM

Re: Undiagnosed
Hi Scout,

Thanks for replying. I was thinking I should have asked more about your problems last time. I read your thread and found it interesting. I have a weakness not as often now which I refer to as bricks on my head. It seems to drag me down and I can hardly move.

Explain about your sensory disturbance problem. What happens?

When I went for the eeg my eyes were flicking all over the place when they were closed. That is usually an indicator something is going to happen. My head was tingling as it does and for the last part with the flashing lights my eyes were jumping around so much that I sort of overloaded and ended with a giant head ache. The operator said that shouldn't happen but it did. Was your experience similar? They said the eeg was normal that is all the info I was given.

Hope to hear soon,


scout316 04-20-2010 03:36 PM

Re: Undiagnosed
hi gjoy

well you had a strange reaction to the EEG test...maybe your eyes were very sensitive to the strobe lights....that part of the test is awful for sure.

the sensory disturbance is weird...okay like if I'm watching a movie and the people are talking quiety then all of a sudden there is loud music playing it feels like I'm confused all of a sudden.It all has to do with changes in sound.I was dx with it when I was first dx with a complicated B12 deficiency...that was in March 2000...I saw university neurologists in Jan.'07 and they dx me with the sensory disturbance again plus the low B12.

My health has been screwed up since April just happened all of a sudden.I think it might have been caused when I entered into perimenopause.I am almost 3 yrs. post menopausal now and I have just so many sx....I'll feel better and get over some of the sx and then different sx pop up or old ones come back...

One thing that is weird is it says on my EEG report that I had decreased amplitude with diffuse slowing during sleep...oh that is funny,because I didn't fall asleep!It gives my dx as migraines.I used to have excellent I have the worst ones..I don't trust them,because they've made quite a few mistakes concerning my tests...which is not acceptable when it means your health & well know I tend to just cry me a river about all my health woes.

lately I'm just wondering whay I'm vitamin D deficient now too..oh yeah so is many people are being dx with that...I want to be tested for Hpylori too,but I don't consume alcohol and I thought Hpylori comes from drinking,but I guess it does not?

so did you ever get a B12 level test?low B12 can cause the tingling in hands/feet really bad...also sensitivity to lights, many neurological sx.

describe the funny feeling you get while the traffic lights or glare from autos bother your eyes?

I can understand how you feel about drinking/eatting...I was the same way,but now I just drink water and I got used to it.I still swet a lot(at night) so I guess it's my fluctuating hormones still.....not fun at all...but I wonder if it's something else besides the menopause..........

how long did you have the mastoid infection before the dr. dx it?I hope once it's gone you feel great & continue to feel great.It seems like you're feeling way better now....I like that!

well we must talk about all of this some more...I need to take a break from typing for now...but I'll be back...and I'm so happy to meet you!


gjoy 04-22-2010 04:54 AM

Re: Undiagnosed
Hi Scout,

Good to hear from you.

Hpylori is a bacteria. < edited >

I have had a B12 test and had been taking supplements so it is actually high. The nutritionist I am seeing thinks some things should be higher than the normal recommendations.

The funny feeling I use to get when driving was the tightening in my chest. That progressed over time to chest pains that made me puff and breathing cramps. I have not had the bad breathing cramps for afew weeks now. It is a relief. Usually it was the sunlight bothering my eyes.

I also was found to have low vitamin D. I have been on daily drops for 6 months, but I think a lot of people are low in this vitamin. Lately my calcium was found to be low even though I take loads of supplements two of which contain calcium. Now I am on another calcium.

I have the problem with the sweating, but it is related to the light and sound. Sometimes in the night when I awake in a sweat it is my husband snoring, but lately I have been able to tolerate it better.

I have had a strange unwell feeling for a very long time, I think about 35 years. I am 52. as a child I had lots of problems with my ears and I wonder if I ahve had the fluid there since then. I complained about the pain in the right side of my head behind my ear in November. It was picked up on the MRI at the start of Feb, but none of the doctors thought it important. I know you said your not keen on antibiotics but I have no choice. The doctor did a swab from my oozing ear and then after they identified the bacteria they worked out which antibiotic was best. One I was taking didn't seem to work at all. It is certainly great to have my energy back. The light and sound are still causing more probs than I would like but seem to be improving.

Surely a sinus fluid would cause probs too. Goingcrazy had that on his MRI as well. I am going to have the CT scan again when I think the infection has cleared just to be sure. I don't want to go back to where I was. I hope the whole lot of symptoms just disappear.

Hope you're having a good day,


goingcrazy8 07-16-2010 02:02 PM

Re: Undiagnosed
Hey Guys.... Just checking back in... How are you both doing? Any improvement or new happenings? Sorry I've been away. Work was crazy for a few months there and I figured the less I thought about how I fealt the better.

I have increased my long list of tests, but the sysmptoms have remained relatively the same. I'm now pursuing a possible Lyme & Cortisol issue as I had what my doctor called a false positive Lyme result and also tested very high on cortisol levels. I'm running out of tests and doctors to see, so I'm kind of getting desperate.

Please check back in. Interested to know how everyone is doing. GC8

scout316 07-16-2010 04:44 PM

Re: Undiagnosed
Hello my dear GC8!

It has been quite a bit since we talked!I was hoping to hear that you were feeling a lot better these days.I am so happy you are okay and not letting your health issues get you down too much.Gjoy is a great help to me and cheers me up.I am hardly on the computer(having light/sound sensitivity now for over a month) migraines...must be all related for sure.

My vitamin D is excellent now and I didn't take any supplements either....go figure,but I did eat the bread and margarine with the added D in I guess it worked after a couple months of that!I have my strength back now,but gaining weight is really hard for me...I'm at 103 lbs. now...better than 99 for sure!

I did not get my 30 day Holter monitor heart test results back yet.My insurance is changing on August 1 so I'm going to wait and see about changing drs.Wish me luck with finding some educated and caring drs.!

Yeah I had a few tests done....negative for HPylori,celiac,gluten,lupus anti-coagulant and rheumatoid factor.My Iga was elevated though.I think I'm going to see a rheumatologist like Gjoy has too.That way I can get tested for the auto-immune disorders.

My stomach has been better,but only because I am very careful about what I eat...actually I feel like I could eat a ton of food(poor,food deprived me!).Gastro dr. is next,but it's very expensive to pay all these specialists(and get no dx or help from all these drs. either!).....I am frustrated and feel beaten down,but I won't give up hope that there will be a dr. who will dx me completely and correctly.

Those lyme tests are hard to read and I wonder if they are any good to be honest with you.How did they test your cortisol level...just a blood test?Did they have to give you that hormone stuff also?I am interested in knowing about that test.

Like you I am trying not to think about how I feel...instead I keep my mind stayed on other things that are peaceful to me(nothing stressful....and it does help).

Keeping busy is a good thing......thanx for stopping are very much missed and thought about!Take care~


gjoy 07-17-2010 04:18 AM

Re: Undiagnosed
Hi GC8 and scout

Good to see you both back on the board. I was reading there can be lots of reasons for false negatives when testing for lyme disease. Willowpoint on his thread talked about finding a lyme literate doctor. Maybe this is what you need to do GC8.

I have had some success this week with another ENT. I was a bit nervous about this appointment as the last ENT I saw sort of snarled at me when he talked. I was wearing my hat because of my light probs. He spoke as if I was an idiot. It is hard to take when you are use treating people with respect, and receiving it back. This man was entirely different, very down to earth and friendly. Called my husband by name and also mate. He listened to my problems which i kept on topic, explaining about the head pressure and the throbbing behind my ear. He tested my ears and found the pressure abnormal in my right ear, the one with the probs. He gave me 6 weeks of antibiotics and suggested I could have a grommit in my ear. It may help with the pressure. I am hoping my ear might start oozing by itself like it did last time. He said it was worth a try. Sometimes things have surprising results. I am not so sure. He referred me to another neurologist, hopefully someone as nice as he. I think i'll wait until after that appointment, which should be within the month. They are going to ring me. What do you think?

GC8 have you ever had a spinal tap? That is one test that could have answers.

I hope Scout you get that holter monitor result. I am sure it will be worthwhile.

All the best to you both.


gjoy 07-18-2010 03:05 AM

Re: Undiagnosed
Me again:)

The other test I have just had is a hair analysis. I have been seeing a naturopath and she recommended it. She said although blood tests may look okay who may still have a deficiency. Your blood may draw from other areas of the body to keep its correct balance. She told me about one of her patients troubled by aching legs. The doctors could find nothing. The hair analysis showed she was deficient in potassium and when she went on the potassium supplement her problem went. She said the hair analysis also will show heavy metal poisoning. She said at the moment there is a problem in the US with mercury in the corn syrup. This is used to sweeten many commercial products. My results will take two weeks.

I am a great believer in the naturopaths. They have helped me a lot over the years. Have a different slant on things.If I didn't have to get medical certificates I would have been staying away from doctors a long time ago. Maybe you both should give them a try.

All the best,


All times are GMT -7. The time now is 06:42 PM.