Well I would like to say i haven't actually been diagnosed with lyme, although i really do think my Dr is leaning towards it. 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. Cancer runs in my family, and this worries me so much also with these weird sensations. I even worry about ALS. Needless to say, whatever illness i have makes me very anxious, and i never had anxiety problems before it all started.
I see my Dr in 2 weeks to discuss results, although they called me yesterday to tell me my ANA and RA tests were negative, my cd57 was 64, and my ATP was 19. I am not really sure what any of this means, but i guess we will discuss next time. Anyone have an idea? I spend most of my days just crying, praying that i don't die, because i honestly feel like i am dying.
Sorry this post is so long, i just had to include everything.
Posted by Keebler (Member # 12673) on :
- It is "spot on" -- Hyperacusis (sound sensitivity) is one unique hallmark . . . and all else you say.
Your current doctor will not likely be educated enough, equipped or able to help. Still, there is hope. I can't write more now but hope others will. Look at the "diagnosing" threads in the top listing of "seeking a doctor."
It does sound like there is a yeast problem too. Did you go on a low carb diet at the same time as those meds you were taking? Did you take probiotics after the antibiotics to replenish the good gut flora?
People say there is a yeast die off reaction that might make your symptoms worse. There also is a die off reaction with lyme, called a herxheimer. During the herx, your symptoms will get worse. You did have two meds that might cause a herx from lyme, and then you would feel worse.
When you say you had a negative WB, did you actually see the test result? If not, get a copy of it and post the results here. Hopefully, it will show some bands, so list them. I am very puzzled that you had a CD 57 test from a non-lyme doctor. This would be an unusual test for the general run of doctors to order. It would also be unusual and more educated for a doctor to order a western blot as the first lyme test, instead of an ELISA test.
When did you start taking the antibiotics in relation to when the lyme test was done? There sometimes is an abrogation of antibody production when meds are given right before a lyme test. A western blot is an antibody test. If that happened, then you might get a false negative test result.
Miscarriages sometimes occur with lyme infections.
Posted by happyinlove (Member # 44593) on :
Sorry i didn't specify properly. My new doctor is a LLMD, my old doctor wasn't. I think i have a yeast issue too.
Yes i did see the results, and no bands were positive. I am going to ask my doc to do the igenex testing.
I did go on a strict diet for 3 weeks during the meds.
Some of my story fits with lyme, but other lyme people i have spoken to think some things don't. People said the constant indoor light sensitivity is not something many have heard of, as their complaints were usually natural lighting problems.
Same with the drunk feeling. It is constant. Most lyme people have said symptoms come and go, another thing my symptoms don't do. It just seems such a mystery
................................................
Breaking up the text for easier reading for many here -
[ 09-08-2014, 10:27 PM: Message edited by: Robin123 ]
Posted by poppy (Member # 5355) on :
In my opinion, light sensitivity occurs indoors or out, no difference.
The drunk feeling sounds more like yeast. So does itchy anus.
If you can afford it, you might consider getting a culture test. See what your doctor says about this.
You do have a lot of lyme symptoms, mixed with yeast symptoms.
Posted by happyinlove (Member # 44593) on :
Thank you for your help. One stool test did show yeast, next one was negative, and my new doctor just did a blood test for yeast. It will be interesting to see results when i get them. Do you know what the cd57 even shows, and what the number 64 means?
Posted by Keebler (Member # 12673) on :
- Find: 27 reasons for seronegative borrelia test.
Audio habits? Do you use in-the ear buds? If so, that can explain maybe -- they can damage ears in various ways (and are not safe, really). Loud exposures?
Still, with all else, seems a better assessment of lyme, TBD and other possible stealth infections is in order.
Also: food additives are often excito-toxic. Avoid all food additives.
MAGNESIUM deficiency, too. -
Posted by happyinlove (Member # 44593) on :
What do you mean by stealth infections? Could you give me some recommendations? Thank you!
Posted by Judie (Member # 38323) on :
From what I understand, not everyone with Lyme has a low CD57 though. Low can just mean you've had Lyme a very long time (my friend had Lyme for at least 4 years and her result was 20)
Itchy anus can be a sign of pinworms. Google parasite symptoms which can be very similar to Lyme symptoms. It can be that you have more than one infection.
Many here with chronic Lyme have also discovered that one of the co-infections are parasites. Check out the PARASITE WARRIORS SUPPORT THREAD here on lymenet by typing it into the search bar at the top of the page.
Gael
Posted by lpkayak (Member # 5230) on :
feeling good in the morning doesnt sound like lyme to me but almost everything else does...i dont define lyme as Bb anymore...its all kinds of things
i guess you could have lyme and be good in the morning...it depends on your adrenals i guess...so many variables
happy...you have come to the right place for support...welcome!
Posted by Lymetoo (Member # 743) on :
Your body is SCREAMING to you that this is candida/yeast.
--
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
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
Nausea sometimes
Tummy pain/bloating sometimes
---
Screaming ...
Even the dizziness and vertigo could be from yeast. You feel better in the morning because you have not eaten yet.
Reacting to Nystatin and diflucan is pretty telling.
Posted by Lymetoo (Member # 743) on :
Yes. Make a list of the foods you can eat and not eat on the nonyeast diet. When I did it, I did a step-down - I eliminated sugar and bread but still ate sweet fruits, then when I was over the sweet cravings in around 10 days or so, I eliminated the sweet fruits. Only veggies, lean meat, particular oils, and nongrain crackers/breads - you'll see the lists.
I think we have to prepare for this before we can start. Like only have nonyeast foods in the home, and be ready with your snacks. Whenever you feel the sugar urge in the beginning, be ready with a sweet fruit, because it's better than white sugar.
There are also noncandida cookbooks and recipes, if you have the energy for any of that.
Your reward will be your lessening of symptoms!
Posted by happyinlove (Member # 44593) on :
Do you think yeast only? I think yeast is definitely present, but not sure if it is my only problem
Posted by Keebler (Member # 12673) on :
- Start there. You can do that while exploring further. -
Posted by MichaelTampa (Member # 24868) on :
On the light sensitivity, I think it is a bit individualized. I have heard some people say they react poorly to lots of sunlight and to lots of indoor light.
I react specifically to fluorescent lights, and know this is the case for others as well. They do generate magnetic fields more than other indoor lights, and also they flicker on and off 120 times per second, and this can be a problem also.
You might do well to pay attention to what types of indoor lights do this, if it is all, or if the incandescent style is okay.
Posted by GretaM (Member # 40917) on :
Stick with your LLMD.
Agree with others, yeast is an issue.
Return to the low carb/no simple sugars diet. Start consuming probiotics. Mixed culture probiotics are the best.
There is a probiotic from Renew Life in a pink box . It is VS. For female support. It is taken orally but somehow makes it's way to support female flora.
There are also probiotic vaginal suppositories from New Roots called Femina Flora (I think-the name is close to it). One suppository is used each night at bedtime for a week.
58 kda is lyme specific. It was one of the bands I tested positive on also. 41 kda is positive in a lot of us.
When you see your LLMD next, mention that you have transitioned to a low-yeast diet and have begun probiotics.
Also perhaps enquire about doing a trial of abx for lyme, and retesting through IGENEX in a month or so.
The antibiotic challenge turned my neg test to pos.
definately stick with your LLMD. Your symptoms do suggest strongly lyme, plus now a yeast/fungal issue.
Posted by steve1906 (Member # 16206) on :
happyinlove, With all that you shared with us, in my opinion you do have Lyme and yeast problems. Ask your LLMD about co-infections.
As far as feeling good in the morning, I know many people that do feel good for a short time when they wake-up - and they have Lyme disease.
Light sensitivity does occur indoors or outdoors, like (poppy) mentioned.
My light sensitivity was mainly white line on the streets & headlights coming towards me at night.
You’re dealing with a lot of symptoms, no wonder you have anxiety problems. I want you to know, everyone with these diseases go through the anxiety problems, with time & treatment it will get much better.
Here’s a few things that may help with the anxiety.
Take a deep breath Keep active Lots of Sleep Challenge an anxious thought Stay connected to others/friends No caffeine No alcohol Do things you enjoy Take a break Problem-solve Read books - watch funny movies Practice relaxation techniques healthy eating habits
I’m glad you have an LLMD, he/she will recommend the right treatment for you.
Don’t ever think about giving up, you’ll start feeling better with treatment.
I say def could be lyme and maybe bads and yeast too.
Get LLMD to do all co-infections and lyme testing. That's the first step in my opinion.
Posted by happyinlove (Member # 44593) on :
What are all the co infections?
Posted by sixgoofykids (Member # 11141) on :
You might look into treating parasites. Testing is no good. I had enough worms to open a bait shop and my testing was negative for parasites.
Intestinal parasites and bacterial overgrowth in the intestines (SIBO) can cause terrible problems.
Also yeast.
Basically an imbalance. Whether or not Lyme is contributing to the imbalance I can't say, but I'd start with the gut (and do what your LLMD says regarding Lyme).
Posted by happyinlove (Member # 44593) on :
This is what confused me. I reacted to antibiotics that fight bacteria. I am not sure if this is just a coincidence or not. Do people with yeast have reactions to antibiotics? I just all seems so odd.