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Healthy 34yo having sudden issues. Doctors clueless.

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Chronic Fatigue Syndrome
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Posted 10/25/2015 10:04 PM (GMT 0)
I will try to keep this as brief as possible, but I've been battling a mysterious illness that doctors are clueless about and have recommended that I turn to Mayo Clinic. Before I do that, I would like to post my story to the community in hopes of some helpful ideas/tips.

I am 34 year old Engineer with no previous health problems, surgeries, etc. about 14 months ago, I started experiencing many nerve related symptoms. No recent fevers, colds, insect bites, etc. Was not on any medications. With a ~1 week onset, my symptoms were (and are): extreme daytime tiredness/fatigue, vestibular issues (motion sensitivity), unrefreshed sleep, tingling/numbness in limbs, scalp, face, muscle spasms, muscles cramps (legs), difficulty walking (stiffness, spacticity, weakness), sleep issues / insomnia, near bouts of fainting, light sensitivity, tinnitus, cold intolerance (my body used to be naturally warmer), cold feet, physical symptoms of panic/anxiety without the emotional. Food sensitivities became another issues - I am now allergic to flax seeds, almonds (other nuts?), and have oral food allergies to things like apples, cucumbers, etc.

Doctors initially thought MS, but that was ruled out by MRI and LP (Lumbar Puncture). I have seen multiple specialties mostly at Kaiser. I have seen about 7 neurologists that say this is not a "neurological disease". No best guess or theory other than SOMETHING is causing issues with my Nervous System. Doctors tried high dose prednisone but that had no positive effect, may have even made things worse. I am currently on CYMBALTA 40mg daily which IS helping with some of my fatigue issues, leg weakness/spacticity, and vestibular issues. I tried going down to 20mg a while back, and issues became worse. I am hesitant to increase the dose without first getting a root cause of my issues.

For my sleep issues, I have tried 2.5-5mg ambien and 0.5mg Ativan which helps some. Melatonin is hit or miss. Tried many other herbal / natural things as well without success.

Tests Performed
------------------
2 brain MRIs 1 year apart - Negative
2 cervical spine MRIs- Negative
Brain CT scan - Negative
Inner ear CT - Negative
2 Nerve Conduction Studies - Negative
Chest X-Ray - Negative
3 Lyme disease blood tests - Negative
Spinal Tap (LP) - Negative
Overnight sleep study - No remarkable findings
Many,many blood tests over the past year all Negative.

Has anyone else had any of these issues, or a subset? Whatever I have, Cymbalta seems to help but I don't just want a "band-aid" answer. I am looking for an actual diagnosis. I am located in San Diego and prefer to see a specialist in SOCAL. The most notable issues right now are daytime sleepiness / fatigue, insomnia, unrefreshed sleep, motion sensitivity, sensitivity / allergy to certain foods.

Any information / follow-up questions are appreciated!
Posted 10/27/2015 7:48 PM (GMT 0)
Ask yourself when did the symptoms start and what were you doing at the time? I had many of the symptoms you mention and my problem was my teeth. I had too many root canals and amalgam(mercury) fillings. You have too many toxins in your body and not enough nutrition to heal. Might try increasing the fruits and vegetables and eliminating any bad foods(sugar, animal protein, and simple carbs) you are eating. I used a lot of juicing to get better. Get your vitamin D level check because vitamin D is very important for your health. You will not get enough vitamin D from the food you eat.

http://www.naturalnews.com/027345_Vitamin_D_exposure_sun.html
Posted 10/27/2015 11:14 PM (GMT 0)
eat2bwell,

Thanks for your feedback. I had a well balanced diet and regular vigorous exercise before the initial onset. One thing that did happen a few days before the onset, I had an allergic reaction to a cookie made of Almond Flour and went to the ER as a precaution where they gave me IV Benedryl and Prednisone. I had no previous almond allergy. The doctors don't think that this even could have caused my long-term issues. My feeling is that my body was already in a compromised state (without any symptoms) and reacted to it.

I have had my vitamin D checked and it was in the mid 20's. I have been taking a Vit D supplement for 10+ months and now my value is 50+. Good thinking though.
Posted 10/28/2015 11:02 AM (GMT 0)
heat123, I am so sorry you are going through this. You sound a lot like me especially when I first became ill. One of the first things I found out was I had an intolerance to soy, it just came on all of a sudden. With all of my fatigue, insomnia & tingling in my extremities, I thought maybe this was my problem, then I found out I had low levels of Vit. D, 17 was my number. I was sure staying away from soy & taking Vit. D3, that I would be on the mend. Didn't happen. Like you I had been through many tests & Drs. visits only to be told I was really healthy, everything was normal. When my Rhuemy told me I had ME/CFS I didn't believe her because I just didn't want an illness that no one thought was real. As time went on & I educated myself on the illness I had to come to terms with the fact that I do have it. I hope you don't, but you do have a lot of the symptoms. Have you read up on ME/CFS? It might be something to check out. The cold intolerance is an interesting symptom because it's like out of nowhere my body temperature dropped & I am cold a lot. 97 is right about where my temperature stays so if I get to 98 or 99, I have a fever. Well, let me just say, I have so many of your symptoms that we could be twins, lol. Take care of yourself & find a Dr who believes this illness exists & make an appointment. I hope you find out what you have, I hated not knowing & going from one Dr. to another. There is a closure that happens when you finally get a dx & no longer feel like you will never have an answer. Hugs, Denise
Posted 10/31/2015 7:16 PM (GMT 0)
Thanks for your response and sharing your story. Can you share some things as to what foods/activities make you feel better or worse? Especially related to fatigue?

Which are your symptoms that are similar to mine?

Do you have any vestibular issues (non-vertigo dizziness or feel like things are unsteady? Motion sickness, sensitivity to artificial lights?)

For me, getting good sleep is vital and helps with the fatigue and dizziness issues, but even if I am asleep for 6-8 hours in a night, I still feel un-refreshed. Any tips on this? Do you experience this as well?
Posted 11/1/2015 6:39 AM (GMT 0)
When I first became ill one of the first symptoms I had is vertigo, I was so dizzy that I became nauseous all of the time. I talked with my pharmacist & he recommended trying Meclizine. I did & it helped some. After a few months the vertigo subsided but I still get dizzy all of the time, I think it is due to my low blood pressure. Some days I have dizziness more than others, but it is a definite symptom I have to deal with. During that time, I was also stiff in all my joints & was so sore when it came to walking. This symptom went away for the most part as time went on, now it is something I have only very occasionally.

Unrefreshing sleep is one of the main symptoms of ME/CFS, I can sleep for 8 hours & still feel like I never slept. Actually, I can sleep 15 hours & not have refreshing sleep. I take Tizanidine to help me go to sleep & Trazadone to help me stay asleep, otherwise I have terrible insomnia all of the time. With this illness, I also have what is called Post Exertional Malaise (PEM), I have to watch how much energy I expend at any given time because my body doesn't recuperate from the energy loss very well. For example, I drove for 2 hours yesterday, visited 2 stores & then drove 2 hours back. Today I am paying for that, I am very tired, fatigued, dizzy & foggy. I have learned to expect this so actually have to plan for it. I choose to have some kind of a life so I will do some of these things that I know I will pay for.

Yes, I do have sensitivity to artificial light, also, sensitivity to loud noises, crowds, etc. I have tried different foods & elimination diets, but none of them helped me at all, no change. That is not to say that you will not find some relief, many people do, but I think it has to do with whether you are sensitive to the food or have an allergy to it. Many people are going gluten-free, but I found no relief with it so I have quit looking in that direction. I spend my time pacing myself & using my energy wisely. I have had to quit working & am now on SS disability. I worked the first 2 years & was not able to live up to even my lowest expectations, lol.

I hope you get some answers soon as to what you have, I do hope it is not ME/CFS because there is no help, just trying to relieve symptoms & have a somewhat happy life. Take care, hugs, Denise
Posted 11/3/2015 5:56 AM (GMT 0)
I got my EBV test results back, and it is a mix of Positive and Negative. Can anyone shed some light into this, especially based on their personal experience:

Component Standard Range Your Value
EBV VCAIGG Negative Positive
EBV VCAIGM Negative Negative
EBV AB Negative Positive
EBV INTERPRETATION Non Reactive Reactive
COMMENT 35 Past EBV Infection.
Posted 11/3/2015 12:42 PM (GMT 0)
The two big pieces I didn't see an test for are parasite and dental.
When you doc test for everything else and cant find a cause its a good bet to look to parasite and dental.

The key is to find a doc or a dentist that already test for and finds parasite or dental problems as part of their practice. Its your health-you don't need doc to learn on you.

Look or a biological dentist and get a check up-would be my advice-vertigo and tinnitus in my opinion are usually caused by jaw issue-can be cured
Posted 11/13/2015 5:52 PM (GMT 0)
Everyone needs vitamins and minerals for good health. People who are sick need more vitamins and minerals because that is what the body uses to repair itself. If you are sick could be you need more vitamins and minerals. I don't believe it is possible to figure out how much of each vitamin and mineral we need. We are all different and our bodies needs are different. My solution to my problem was juicing. I ran many pounds of carrots, cabbage, celery, beets, cucumbers, kale, and apples through a juicer which removes the vitamins and minerals from the fiber and allows the body to absorb the nutrients better. My body was smart enough to figure out how much of each of the vitamins and minerals it needed. I did get my health back. Understand diet is not the only thing we need for good health. We need exercise to increase blood flow in the body. We need proper sleep to allow our body time to heal. We need prayer and meditation to take the stress out of our life.
Posted 11/15/2015 7:52 PM (GMT 0)
Hi all!
I have many of ur problems. I have been sick since pneumonia in 2009, but I am in my early 60s. I freeze alot...always using blankets n jackets. I get very I'll after anything mental or physical that is out of my new found limits. I love walking!! Can't do it now...sets me back. I have Insomia n depression with this stupid illness n not alot of understanding even on my part. I have dizzy spells n have thrown up from just getting up too quickly. This is no fun. Brain fog is awful! I have had blood tests, celiac test, n lyme test.
The only things to help me is this new "resting" thing for one......take 10 to 20 minute rests after anything physical or mental. All day!! It's hard for me as I am trying to raise grandchildren. Also...say no....when u shouldnt, and eat better. Take those vitamins. Hope this helps just alittle. We all need all the help n caring we can get!
Posted 11/18/2015 11:36 PM (GMT 0)
Remember you are in charge not your doc. You pay him-he doesn't pay you.
Tell him off after you regain your health-never before.

The world has some great docs who help and many average docs who don't. the right one can make all the difference the wrong one just throws meds after meds at symptoms.
My experience is great docs look to why your are worn down and open to illness-which can mean things like dental and parasites.
Best of luck
Posted 12/29/2015 3:00 AM (GMT 0)
I had all of the same .please Get a igenix lyme test. An id doc even said my test was a false positive..They will say its heavy metals viral etc etc...do not give up
Posted 3/20/2016 5:44 PM (GMT 0)
Hello Heat 123, I know it's been five months since this post. Have you gotten any further
testing done? Any results.
I agree with bluelyme. I was tested too through Igenix. It's best to find a
Lyme Literate doctor if you're able to do that. Check the website, www.ilads.org
They can refer people to Lyme doctors in their area by zip code.
You can still have the illness even if you have negatives on your tests.
It takes a well qualified Lyme doctor to diagnose this. They are
far and few between but you can find one if you do some searching.
Good luck with this.
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