posted
I am so gutted and need to vent. Here is my story although i have posted this before. I just need to update for anyone who didn't see my original. 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 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 an LLMD doctor lately who tested for ANA-Negative, RA-Negative, Mycoplasma she said tests for upper respiratory stuff and i showed past infection but not present. CD57 is a 64, she says that is on the lower side for immune health because they like to see above 120, but below 60 is usually in lyme patience, so mine is on the low side but within range. ATP is 19 and should be 30. This helps transfer energy to the cells. She said lyme test and all co infections are negative although lyme can hide. She never suggested an igenex test, and said she thinks fibro and cfs. I told her about my tingling in hands, weird calf muscle pain, and she said this sounds like neuropathy related stuff. Did a test for neuropathy and said my levels are normal than usual but this could be due to my low ATP, so she gave me some ATP supplements and wants to see me again in 7 weeks. I feel really hopeless. I do not see how some supplements for ATP are going to help solve all my problems, and i feel like she should be trying to help me more in playing detective and getting to the bottom of this. I also suspected candida overgrowth seems i have a lot of the symptoms of that also, but my blood test showed no overgrowth. I just feel like there is no end to this, and no one is helping me. I have wasted so much time and money on stuff. I also had an ultrasound find gallstones and enlarged liver and she didn't say much on this either, just we don't want to remove the gallbladder if we don't need to. I hate when docs don't try and piece this altogether. It seems one big problem threw my body out of balance, and since then other stuff has thrived. Even she said EBV is usually just due to a low immune system and being given the chance to thrive. It doesn't just happen by itself usually. I feel so defeated. So to answer the question, i guess she doesn't think it is lyme due to a cd57 that is not low enough to be a lyme number, and negative co infections and lyme testing, and all i really found out today is i have unspecified hereditary and idiopathic peripheral neuropathy, which doesn't really tell us much either.
Posts: 17 | From Texas | Registered: Sep 2014
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
Have you been tested for h. pylori (breath test or biopsy is best)?
Also, if you're having female yeast infections, then you have yeast overgrowth, regardless of what the blood test (not very accurate) says...
The reason you feel worse on antifungal meds is from die-off. And it could be from the yeast, and/or Lyme (some doctors in Europe have found fairly good luck with using antifungals as part of the protocol for Lyme, even in patients who don't have yeast overgrowth symptoms).
To cope better with yeast die-off, you may find help from taking Molybdenum (a mineral supplement).
I'd suggest getting a copy of your Lyme and any coinfection tests so you can read them yourself. Often, there are positive bands on a Western Blot though the overall result will say negative.
If you can find a Lyme Literate MD or Naturopath, I'd suggest doing so... You can post in the "Seeking A Doctor" area of this forum for help finding a decent doctor near you.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Don't give up! EBV is probably only the tip of the ice berg with your symptoms.
1) Low cd57 is usually more for people who've had Lyme undiagnosed/untreated for several years, not the time period you're talking about. Not everyone has a low cd57 either when they are chronic.
2) Lyme tests aren't accurate. The sickest people with Lyme don't get a positive Lyme test because their immune system can't make the antibodies. I've known several people who didn't test positive until they were a few years into treatment because their bodies were finally strong enough to make antibodies and fight the bloody thing.
3) My total IgE levels are 10 times above what is normal (no food allergies either). A lot of your symptoms sound like when I had a toxic exposure. I was in a building that had new construction and safety precautions weren't taken.
Here's a list of VOCs that can set a person off (they can be odorless):
6) I have energy problems too. ATP supplements didn't help me, but we're all different.
7) Get a second opinion.
I tested negative for bartonella. 11 months into Lyme treatment, I got the telltale, red streaks. I looked like a tiger. Testing is NOT accurate.
I've tested positive for 13 coinfections. I've had the most progress on babesia meds even though I've never tested positive for that either.
I also got reinfected last year (I got the rash). I tested twice in the 6-8 week ideal period. I had 10 bands on the Igenex test, but was still considered CDC negative on both tests. Testing is so flawed.
They probably didn't test you for all the bands on whatever test that doctor ran either.
Posts: 2839 | From California | Registered: Jul 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Key links for you to save to your personal research folder in your computer. This set if for your REFERENCE TOOL BOX.
In addition to the links from Razzle and Judie . . . be sure to copy and paste those to your file folder, too.
And save this thread to a BOOKMARK so you can come back to it for the links and replies posted.
I can't read your post (many here have trouble with solid text) but the headline and a few phrases my eyes could capture certainly tell a familiar situation.
It may or may not be lyme, still, there are many ways to be proactive on your own as most doctors really are not very helpful for complex cases. We must think outside of the very narrow box they are stuck in. And find the doctors who go the extra miles as detectives for us.
Going GLUTEN FREE is the first step I'd suggest as you sort this out. Also avoiding all processed foods and all food additives. Here's why:
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
I am so sorry you are going through this. You should be tested through IGeneX Labs in Palo Alto, CA.
You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
They are far and few between, unfortunately. You need to go where they are.
Also, most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":
When calling for an appointment, ask if they have any cancellations or a waiting list. Patients have been able to get in sooner to see a LLMD by doing this.
The top LLMD, Dr. H, has written a new book entitled, "Why Can't I Get Better?". It is an excellent source of information.
Read "Cure Unknown" by Pamela Weintraub. Get it at your local library or buy it used on Amazon.
Also view "Under Our Skin" for free on www.hulu.com
Btw - please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme. Thanks.
I would recommend you go and edit your post by clicking on the pencil/paper icon, making your changes then clicking "Edit post". This will be very helpful.
Posts: 9020 | From Illinois | Registered: May 2006
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posted
This is what I wrote for you a few weeks ago:
-
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.
--------------------
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Yes i did see you post, and have tried everything for yeast and my symptoms remain. My doc says yeast is really just something that goes along with a bigger problem. Plus, i have tested every which way for yeast and it never comes back an issue. Not sure how reliable testing is, but doc said blood testing shows no yeast and neither does a stool test.
Posts: 17 | From Texas | Registered: Sep 2014
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posted
My CD57 was normal and one practitioner supposedly LLMD told me not likely Lyme. I later showed positive for 4 bands on the Western Blot. Can you afford to travel for treatment? If so PM me for my LLMD. He seems to treat based on symptoms not labs.
Posts: 97 | From Rockwall,TX | Registered: Apr 2014
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
What color is your tongue? I think symptoms are really more important than any test results. Here is a website that discusses yeast and testing:
But what you have described just sounds too much like yeast to accept a negative blood test result. What was the blood test looking for? Antibodies or actual yeast? Yeast in the bloodstream is dangerous, can be life threatening. Antibodies to yeast do not have the same connotation.
I do agree with the statement that yeast can go along with something else, be a result in other words, rather than an original cause.
Posts: 2888 | From USA | Registered: Mar 2004
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I'd post in seeking doctors. I believe there are very few doctors in Texas who know anything about Lyme.
"My doc says yeast is really just something that goes along with a bigger problem."
Agreed.
Other things can indicate yeast like a white coat on the tongue, white balls in your stool (which can also be giardia), discharge, etc...
I've had the problems you described and yeast wasn't the bigger issue, but that can definitely be contributing.
The symptoms were from my body being overwhelmed from a toxic exposure and meds that didn't work for my body.
This can also happen with infection. The body is fighting as hard as it can, but can't keep up with what's going on. You can feel drunk, spacey and checked out.
Are you taking probiotics (away from the yeast killers)?
Probiotics can be helpful too.
Posts: 2839 | From California | Registered: Jul 2012
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