Does this sound like lyme? I need help

[emzie89]

Hello,

Last October i had really bad digestive issues. Bloating/constipation and gas. I tried every single over the counter remedy, and nothing worked. Fast forward to December, and i found out i was pregnant. I started to feel a bit spaced out, it felt like i was extremely high. It would come and go, along with some headaches every couple of days, which with a little tylenol would be gone.This went away after a few weeks, and then a week later i miscarried. I did not feel spaced out, or have the headaches again until about 3 week later, and now the spaced out feeling is 24/7 from when i wake up to when i go to bed for the past 4 months. It feels like being drunk or high all the time.

I am certain that these issues have some link to digestive problems, because the spaced out feeling gets worse when i eat sugar/carbs. I have been to a gastro who did some stool samples, and the only thing that came back was yeast overgrowth in stool. He gave me nystatin for 10 days, and it didn't do anything except make me a little more regular with my bowel movements. He wanted to do a colonoscopy, but i have put that on hold because i don't want to go under anesthesia with my head feeling this way. Other symptoms i am experiencing:

Extreme light sensitivity

Achy neck

I do not have vertigo standing, but notice i feel very dizzy if tilting my head backwards only

Heartburn only after "bad" foods

Bloating

Constipation

Stomach pressure

Itchy ears/nose/anus

Post nasal drip

Tickling throat/dry cough

Itching/red vagina

Urgency/frequency urination (microscopic blood found in urine)

Undigested food in stools

White tissue bits in urine and stool

Yellow nut looking things in stool sometimes without consuming nuts

Tingling in hands and feet

Itching on palms of hands and feet, but no rash

I have had a ct scan of the head which was normal, and have been tested for celiac twice. I also read about yeast overgrowth issues seems my gastro found overgrowth in my stool. I saw a doctor who deals with yeast overgrowth who has given me nystatin and diflucan to try. I have given it a go, but i am 3 weeks into treatment now with 0 improvement.

My doctor said i may have yeast overgrowth, but she is starting to wonder if that is just one of my issues. She said that she has never heard of light sensitivity being described as a symptom of yeast overgrowth, and she is starting to wonder if there are other problems going on. I have never had a lyme rash, or been bitten by a tick to my knowledge. I don't travel to places where i could of been bitten, and i live in Texas where it is pretty rare. Does this sound like lyme? I am at my wits end, because nothing seems to work for whatever this is

[JackieCalifornia]

Part of the difficulty with Lyme and its co-infections is that they show themselves differently in different people, and when it's a grab-bag of different infections, that confuses the situation even more.  Then pile on top of that big important people in the medical profession think that Lyme = the sniffles, and there is very little that is the same from person to person.  

Most diseases show themselves in a fairly standard way from person to person, but Lyme seems just the opposite.  The best description I ever came up with for myself was like having the flu and a hangover at the same time.  Not very scientific, but it was how I felt.

Docs and the rest of us are taught to group the whole world by similarities so that we can easily describe them to others.  Lyme etc. goes the other way:  it is a changeling, different in everyone and often shifting symptoms over time.  

Some of us have primarily neurological symptoms, others have joint and muscle problems, others have digestive issues.  No wonder the docs are confused.  All the more reason to find a doc who understands Lyme, not just a doc who thinks s/he understands.

Not helpful to you, I know, but that's the way Lyme rolls.  A good, steadfast doc and simply not giving up are the two most important things I know in dealing with Lyme and its evil little friends.

[emzie89]

Thank you so much for the info. I pretty much gave up on MD's altogether when i was first diagnosed with a sinus infection, and then later told by an ENT i did not have one. The antibiotics the doctor put me on made me feel 10x worse, and when i called to say it didn't seem right, she told me i needed to go to a urgent clinic to have antibiotics by IV, because clearly the ones she gave me weren't strong enough. I didn't get the IV because i had a feeling it was not the cause of my symptoms. I have not heard of people having light sensitivity and a drunk feeling constantly with a sinus infection, but i did go to another doctor because i didn't feel right. I told her i had an achy neck and light sensitivity, and she told me to go to the ER immediately because it sounds like meningitis. The ER told me i would not be talking and walking if i had that, but they couldn't find anything. My doctor right now is holistic, and a DO, but she seems pretty thorough. She actually mentioned lyme based on the light sensitivity symptom, but said there are many different things that cause these symptoms. What were your symptoms?

[mojogal]

Ditto what Jackie said. I lived in Texas several years back and I know the Dr's there are few and far between. You may find one in Dallas or Houston now.

Lyme is every where!

[JackieCalifornia]

... and forgot to say:  the docs in Texas are, at the higher levels of the medical profession, absolutely against the idea that Lyme is a problem in Texas.

I suggest you search online for something like:

               texas lyme disease

and you will get lots of leads to groups (often groups of patients who have or have had Lyme) who understand Lyme and can guide you to a local Lyme doc.  If the first one you see isn't your cup of tea, try another.  Treatment isn't fast, for reasons having to do with the slow reproductive cycle of the Lyme bacteria, so it's going to take a while -- months, not weeks.  I was treated for the better part of a year, for Lyme and babesia both -- they need different meds, so are not treated at the same time.

Find a doc you are comfortable with, but if you find over time it's not a good match, then think about switching to a new doc.  Lyme is on the frontiers of medicine, so some docs are easier to work with than others and some are (as in any group of humans) wiser than others.

[JackieCalifornia]

Welcome to MedHelp --

... but sorry you have reason to be here.  You are asking good questions, and critical to getting good answers is finding an MD who understands Lyme, which many MDs do not.  Medical science has not quite caught up with the spread of Lyme and its coinfections (other, separate infections the Lyme ticks often carry), and the firm position of many MDs and medical boards and societies is that Lyme is hard to get and easy to cure:  wrong, and wrong.

You say:  "I have never had a lyme rash ...."  Neither did I, but I had a serious case of Lyme and one coinfection, babesiosis.

You say:  "...  or been bitten by a tick to my knowledge."  Me either.

You say:  "I don't travel to places where i could of been bitten, and i live in Texas where it is pretty rare."  Bad news is:  Lyme is everywhere, but the medical profession continues to deny it.  Ticks are everywhere.  And where there are ticks and Lyme, there are people and animals with Lyme, and often with co-infections.

I am about the least outdoorsy person you'd meet, but I got Lyme, probably from touring college campuses with my kid.

Medical 'science' is so broad these days that each group of specialists relies on other groups of specialists to say what it and what is not a new disease -- and given how inbred the speciality docs are, they tend not to think outside the box as much as they ought to, imo.

The Infectious Diseases Society of America (IDSA) is the main voluntary groups for docs who diagnose and treat ... yes, infectious diseases, and groups like that often control what is considered standard vs what is considered out of bounds in diagnosis and treatment.  A doc who goes outside those 'standards' is risking being ostracized by other docs and also sued for practicing unsound medicine.  

What if the IDSA is wrong?  Well, the dissident docs set up their own organization, the International Lyme and Associated Disease Society (ILADS), which has a good website with information you might find useful. ILADS docs understand that new and developing diseases happen constantly in nature (like AIDS did, about 30 years ago), and that ignoring what the patients are reporting is not only foolish but also bad medicine.

Others here will make comments as well, and if you want to find an ILADS doc, you can email to    -- contact [at] ILADS [dot] org -- and tell them where you are located and how far you can travel.  They will send you names of ILADS member docs.

You can also post here something like 'Need LLMD near Denver CO' or wherever you are.  'LLMD' is not a degree or a title, but is patient shorthand for a doc who understands Lyme and its coinfections:  a 'Lyme-literate medical doctor', or LLMD for short.  No doc calls him/herself an LLMD, since it's just slang, but it helps us the patients figure out who's who.

--->>>  We do NOT post names of LLMDs here in the open, because in some places, the state medical board will try (and sometimes succeed) in revoking an LLMD's medical license for the sin of disagreeing with the local medical board.  Nice to have an open mind, huh.

You may or may not have Lyme, or Lyme and other things, but an LLMD will not assume you cannot and do not have Lyme.  Keeping it on the 'possible' list until ruled out by testing etc. is the prudent thing to do, and scoffing at a patient who even asks about the possibility of Lyme is not what should happen.

I personally went through *20* highly trained MDs in a city with lots of sophisticated and highly trained MDs, and the last one finally tested me for Lyme.  The test came back positive! -- but the doc assured me gently that I could not possibly have Lyme, because she had patients with Lyme, and they are all near death.  Her words exactly.

I had had a friend long ago who had Lyme in the Midwest, and only because of that did I take the positive Lyme test and run to an LLMD.  I was promptly confirmed as having Lyme and babesia, was treated for something over a year with various antibiotics, and 5+ years later, I am fine today.

You may not have Lyme, and I hope you do not, but I would certainly do what you are wisely doing:  keep asking questions until you get answers that make sense to you.

Please keep us updated, and let us know how we can help.  Take care!