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View Full Version : Does this sound like FIBRO/CFS. I suspect there is more to this. Possible lyme?


Unregistered
09-28-2014, 10:17 PM
HI all,

I would like to share my story in hopes someone here may be able to give me some guidance, or have had a similar experience.

Chronic constipation starting in October 2013 (bowel movements have not been the same since)

Root canal in November

Pregnancy in December( Started to feel spaced out, sort of like a drunk feeling/sensitivity to artificial lighting)

Miscarried after only 2 weeks, and felt ok for 3 weeks, and then randomly one day the spaced out/drunk feeling/artificial lighting sensitivity came back and has been constant since January (8 months)

I saw a gastro in February who found yeast overgrowth in my stool. He gave me nystatin, and my symptoms never changed. Started researching yeast, and was certain it was causing my issues. I went on a strict diet, and found a doctor who put me on nystatin/diflucan for a month, and i had no relief in symptoms.

Things i have tested for:

Thyroid-Fine

Diabetes-Negative (Although blood sugar slightly out of range)

General blood testing- Ok (neutrophils that fight bacteria 2 points out of range at last blood test), overall white blood count within range

CT head scan-Normal

Food allergy testing shows no allergies

Doctor has tried (Metronidazole)Makes symptoms 10x worse

Nystatin and diflucan make symptoms feel 10x worse

GP a while ago said i had a sinus infection. I had some post nasal drip and my nose runs a bit), so she gave me ceftin- This also made my symptoms feel 10x worse.

Western Blot for lyme-Negative

Symptoms

Constant drunk/high feeling

Lack of focus/ Poor memory

Loss of libido

Bouts of fatigue

Light sensitivity (Not so bad outside in natural light, much worse with indoor lighting) It feels like when you first wake up and turn a lamp on, but my eyes never adjust to the light, and it is constant.

Sound sensitivity

Head pressure around temples and eyes pressure sometimes

Stabbing sensations sometimes at temples

Undigested food in stools

Hard pellet stools/ mucus in stools

Carbs/Sugar/Caffeine make drunk feeling worse

Random itching over skin but with no rash

Heavy feeling eyes/Sometimes feel very sleepy after food

Feel at best first thing in the morning

Sneezing/runny nose

Post nasal drip (constant feeling of build up in throat)

Sore tip of tongue, sometimes middle/back area of tongue slightly white coated

Itchy anus/itching inside ears/nose

Chronic vaginal yeast infections/vaginal itching

Acid Reflux

Heartburn

Cold hands and feet sometimes

Tingling in hands and feet

Stabbing sensations over body

Recently chronic sore throat- Hurts to swallow/Swollen lymph nodes in neck

Recently doctor told me i have a heart murmur

Had a food sensitivity test that showed no food sensitivities, but a high IgE

Random body twitching all over. (in eyes, stomach, back, legs, and feet)

Urgency/frequency of urination- Saw urologist who saw no infection present, and did a cystoscopy which showed no issues with the bladder. Urologist suspects possible chronic cystitis

Stiff feeling hands

Back pain middle/lower area- stabbing sensations sometimes

Nausea sometimes

Tummy pain/bloating sometimes

Chest pain sometimes

Extremely achy neck most of the time

Motion sickness I never had before this started

Random vertigo, especially when tilting head

Positive test for Epstein Barr Virus

I want to have hope, but I am losing it rapidly. They did an ultrasound of my abdomen and found I have gallstones. The doctor called me and also said I have enlarged liver which really scared me, because I know enlarged liver can cause some threatening complications. I am only 25, and I feel helpless.

These past few weeks i have also had this weird sensation in my legs which is hard to explain. It is in the calf muscles. Stabbing sensations, pain, tingling, and sometimes it even feels like my legs are heavy and shaky to walk on.

I saw my Dr who told me: ANA and RA tests were negative, my cd57 (measuring immune health was 64), she said this is pretty low seems most healthy immune systems are 180+, and my ATP(energy to cells was 19).
My doctor also did a neuropathy test due to the tingling etc and said that my numbers are in the 80's, but should be in the 100's, so i have neuropathy, but we don't really know why yet. She gave me ATP fuel which has helped significantly with the weird sensations, but i still get some tingling/weird vibrations in my feet. I am a bit upset that she has not done more tests as it seems my immune health is very poor. She suspects fibro/cfs but i believe there is more to this. I know this is a lot to take in, but has anyone else had a similar experience?

Unregistered
09-29-2014, 08:45 PM
So sorry to hear about your miscarriage! I hope you find some answers.... you listed a lot symptoms I also have! It sounds to me like you are suffering form several illnesses, maybe you should see an internal medicine doctor. A good one! He should be able to give you a very accurate diagnosis. But from here it really sounds like you have a lot going on, probably also fibro, but I'd definitely see an internal medicine doctor if I were you.

Unregistered
10-05-2014, 07:39 PM
I noticed you are in the same area as me. Are there any doctors you would recommend?

Unregistered
10-05-2014, 09:23 PM
Hi there! My mom is currently seeing a doctor named ''Naureen Alim'', according to my mom it's a good rheumy, I might go see this one as well, because the last one wasn't goo at all. Btw... if you ever need a good neurologist I recommend Moshe Allon, great neurologist! They're all in Houston.

Unregistered
10-07-2014, 01:10 PM
Wow, that's quite a laundry list of symptoms! I feel for you.

I agree with the above poster, you may have more than one illness. There is some evidence to suggest that stress plus illness or injury can lead to fibro or CFS. I can't think of much that is more stressful than a miscarriage. It's possible that has triggered fibro/CFS. But I've never heard of light sensitivity being part of those illness 'packages'. So perhaps you are also facing something else.

That is a really tough place to be in. My sympathies.

Unregistered
10-12-2014, 09:26 PM
I would say to take a look into Candida. With the yeast overgrowth in your stool, this was my first thought. .

Unregistered
10-13-2014, 10:58 PM
I'm sorry for your loss and your suffering, just know you are not alone. I agree that you may have multiple issues that need to be deciphered, which is extra hard with so many symptoms. I, too, suffer from MANY of your listed symptoms (stabbing sensations everywhere, nausea, dental issues, numbness/tingling in hands/feet, always feeling cold, sensitivity to light & sound, post nasal drip, acid reflux, occasional vertigo, etc) and am trying to learn what to attribute to my recent diagnosis of fibro and what isn't explained by fibro... which given that fibro isn't understood, its an uphill battle.
It sounds like they've run the gammet of testing on you, more so than my docs did with me. My only other thought is get brain & spine MRI to rule out MS, but many of your symptoms seem consistent with fibro. Just keep educating yourself and seeking answers, this is a great place to find people dealing with similar experiences.
I also recommend trying probiotics for your bowel issues. I had an overgrowth of bacteria that caused white stool (freaked me out at first!) and took Culturelle and immediately all my IBS symptoms went away with the exception of occasional constipation. As for the twitching, try increasing potassium in your diet. Bananas are good. I had an eye twitch for 4 days straight (ANNOYING!) then learned about low potassium, ate a few bananas and it was gone. Every time I start twitching I eat a banana and it goes away. Low K is just one possible cause for a few symptoms, but an easy one to rule out.
Best of luck with everything!

Unregistered
11-18-2014, 07:03 PM
Hello! I know that you posted that you have been checked for Lyme disease, but sometimes the lab that checks for Lyme is not a good lab for that testing. I have known of many people who have tested negative for Chronic Lyme disease through their local lab and then when their blood work was sent to a lab that specifically checks for many strains of Lyme disease, they get a positive result. This happened to me. I tested positive for chronic Lyme through the IGenex lab in Palo Alto, California.

Unregistered
11-18-2014, 09:08 PM
Welcome to the forum. With such a long list and the fact you did test positive for some things, I would suggest some of your symptoms go along with what you tested positive for and others I would say divide them out and don't put all your symptoms in one basket. Fibro can cause some things but not all and the best thing you can do is see a doctor for each part of your body. Like see a internal medicine doctor for your digestive problems first and a neurologist, for the neuropathy and Epstrin Bar Virus, and maybe a rheumatologist for your stiff hands and other blood test results if necessary. The worse thing someone can do is to try and self-diagnosis themselves when they have a bunch of symptoms and results that are going every which way directions. Be sure to read up on the side effects and symptoms that go along with the diseases you know you have and then most important learn how to manage the symptoms of each by learning coping skills.

In that this forum can help you by reading through the sections on chronic pain and alternative methods, and general questions. If any of your symptoms are like fibro symptoms then I am sure members have posted how they manage and deal with those things. If not ask questions and join in with answers where you feel your reply will encourage someone else. I hope this helps you. :)