LymeNet Flash: So many questions... I need Advice.

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»	LymeNet Flash » Questions and Discussion » Medical Questions » So many questions... I need Advice.

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Topic: So many questions... I need Advice.

Skyler
LymeNet Contributor
Member # 11549

posted

Well, most of my life I have had many odd medical problems that were not deadly but did cause me lots of pain.
Recently my mother and I have decided to look at them as one problem, and not just a countless number of different problems. When we did this, it all started to point to Lyme. I can practically check off every symptom on the list minus the rash... which is scary.
If I have Lyme, I have had it for some time... at least 10 years. I am soooooooooo incredibly tired all the time, feeling like I am in a total fog, unable to think or speak clearly sometimes, my joints burn and pulsate every day, sometimes getting so bad I can't walk/I am stuck in bed (these are my 3 most bothersome symptoms), I simply can not imagine living another 10 years like this, let alone another 40. (Recently I have started getting dizzy spells that are pretty intense... never had those before.)
There is SO much different information out there on Lyme, I don't know what to make of it all. So I decided to come here and hear it from the folks that know best.

If any of you out there would be willing to share your stories with my, I would be so incredibly thankful.

I am knowledgeable on the science of Lyme, but with so many different symptom lists out there (some list symptoms I have that are pretty rare, some lists dont have those symptoms...), and the difficulty of finding any substantial information about chronic Lyme, I just feel lost in a sea of information.
What symptoms are more commonly associated with Lyme?
How Chronic Lyme commonly treated? How was/is it for you?

If anyone can help me out, that would be SO incredibly wonderful. I am just so confused and slightly frightened...

Thank you for your time...
Have a wonderful day!
[Embarrassed]

)
-Sleepy Sky

--------------------
I'm probably sleeping...

Posts: 419 | From Florida | Registered: Apr 2007 | IP: Logged |

Geneal
Frequent Contributor (5K+ posts)
Member # 10375

posted

Dear Skyler,

Welcome!!! Glad you found this site. Sorry that you are feeling so poorly.

I don't recall a rash, although I had what I thought was a pretty bad case of ring worm

following hurricane Katrina (we were living outside in the heat without electricity for 34 days).

As I look back, I believe that I've had symptoms for at least 3-4 years, however they weren't

so debilitating that I couldn't function....

Hard to tell really...

I believe my exposure to Lyme began one summer (2002) when we thought I had West Nile Virus.

Stayed flu-like for a good month, then found out I was pregnant.

Sure I was tired, but I was also nursing a new born around the clock, and had an 18 month old to take care of.

Couple of clues for me is that I had these stabbing pains in my head and my son and I stayed with yeast problems.

He would get thrush every 10 days and I would get it in my breast. Lovely, huh?

Fast forward to July of last year.

Started with severe hip pain (right hip only). It was so bad that I couldn't walk right, or sleep.

Just kind of went downhill from there very quickly.

I lived on Advil Cold and Sinus last summer, thinking my fatigue and head fog was due to sinus.

In September everything came to a head. Was in Walmart when all of a sudden I realized that I couldn't get a good breath.

Started getting shakey, felt like I was going to pass out.

Made it to the car, called my husband and told him something was really wrong with me.

Thus started my many different MD visits trying to find out what was wrong.

Saw an Internest. Had Pulmonary function test done, slew of blood work, etc.

Post Traumatic Stress Disorder was my diagnosis.

Was in The ER a couple of times, unable to get a good breath, feeling like my throat was closing off....another Rx for xanax or paxil.

Saw a Pulmonologist....he thought congestive heart failure or pulmonary hypertension.

Saw a Cardiologist...Had nuclear stress test done...Your heart is perfect, he said.

Meantime I was declining so quickly. Couldn't speak, couldn't remember anything, brain fog so bad

I felt as if my life was a dream.

Started with swallowing issues. Difficulty with balance. Incredible joint pain in my fingers and hips.

Pain in my chest, shoulder blades....pain that moved constantly. Night terrors, panic attacks...fever.

It's Lupus.....no, my ANA came back negative.

It's Rheumatoid Arthritis....no, that test came back negative too.

I had a referral to a psychiatrist. Thank God he wasn't taking any new patients or I may have

let all of those MD's talk me into me being nuts.

Googled my symptoms. Two things came up consistently.....Lyme and Lupus.

Knew it wasn't lupus.....so it had to be...Lyme??!!!

Could not find a MD to do a Western Blot on me to save my life....You don't have Lyme. We don't have that here.....etc.

Finally, went to a walk-in-clinic...Had a MD do a Western Blot (through wonderful Quest lab..ha!)

Hadn't found this site yet....or I would have had my test done through Igenex lab in Ca.

Only had one band come back positive (Igm 23), but that is all that came back positive.

That MD ran every test known to man on me...parvo-virus, malaria, AIDs, etc.

I cried in relief when they called me and told me I had Lyme disease. I knew something was wrong with me and I knew it had to be Lyme.

Then I found this board. Found a Lyme Literate Medical Doctor (LLMD) from this board and it's wonderful members.

Started treatment back in October.

I think I am very blessed to have discovered my Lyme so "quickly". Many members here have been misdiagnosed for many, many years.

I did all the Lyme checklists. On the CanLyme site, I had 54 out of 74 symptoms, but that list was growing daily.

I always had a higher number of symptoms that was needed to "strongly" suspect Lyme disease.

My neighbor also has been ill off and on for about 2-3 years. Was diagnosed with CMV a couple of years ago.

Talked to her about my symptoms when she was told by an Infectious Disease MD that she had Typhus.

Finally convinced her to have a Western Blot done.

Positive for Lyme disease. She now sees my LLMD.

My husband had a positive Elisa (I skipped this test), was just tested via Igenex and we should get

his results next week when he sees our LLMD.

Oh yeah, it's here. Have another neighbor who is on his third bulls-eye rash following a tick being pulled off his arm last week.

I have had strange and unusual symptoms. Still do. Yesterday, my teeth hurt....hadn't had that one for a while.

Do yourself a BIG favor. Get tested via Western Blot through Igenex lab in CA.

Find a Lyme Literate Medical Doctor (LLMD) who knows that Lyme is a Clinical Diagnosis and is knowledgeable about the disease and co-infections.

It is a long and bumpy road to recovery....but you've landed in the best spot possible.

The people here know how you feel and what you are going through.

Sorry you had to come here, but glad that you found Lymenet.

It has helped saved me and my sanity and continues to do so every day.

Hugs,

Geneal

Ps: I am a Speech Pathologist, so I knew when I couldn't speak or swallow there was something neurologically wrong with me.

Had no idea Lyme was so serious or debillitating. Now I know......

Posts: 6250 | From Louisiana | Registered: Oct 2006 | IP: Logged |

TNJanet
LymeNet Contributor
Member # 10031

posted

Geneal gave you the best advice, especially where you are now.

You need to get tested. While Lyme is a clinical diagnosis (symptoms) getting a test may well show that you have Lyme, and the Western Blots (IGG & IGM) will show long term and/or more recent infection.

It is VERY IMPORTANT that you get WB tests through IgeneX labs. They specialize in Lyme testing and are the most accurate. If you go to a lyme literate doctor, you may want to be tested for coinfections which can also make you feel terrible. I tested positive for Mycoplasma Penetrans and Babesia.

Go to the Newbie Links here and read all you can. You won't be able to absorb all of the information, but just read as you can and that will help so much.

So sorry you are going through this but am so glad you found this site. It may save your life!

Blessings,
Janet

--------------------
DISCLAIMER:
No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research.

Posts: 287 | From Tennessee | Registered: Sep 2006 | IP: Logged |

CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136

posted

W E L C O M E ! ! ! !
!*)!*)!)*!)!*)!*)!*!

Sounds like it could quite possibly be a TBD,
could be something else but could very well be a TBD perhaps BABESIOSIS which is spread out all over the USA and has different strains- the dizziness and brain fog and joint pain and all your symptoms are Babesiosis symptoms as well as Lyme- I would get to a LLMD and have a thorough Differential Diagnosis and get evaluated-
Best wishes,
Sarah

--------------------
There is no wealth but life.
-John Ruskin

All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer

Posts: 5639 | From Aptos CA USA | Registered: Apr 2005 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

Welcome!! YOu do have a good dr in your area. Make an appointment and get your tests ordered through Igenex while there.

I'll send you a private message about that. Please do not stop looking for an answer. Your life is at stake.

I never had a rash either. So don't let that carry too much weight.

More information is available here:

Wild Condor's Links and information:
http://www.wildcondor.com/lymelinks.html

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96222 | From Texas | Registered: Feb 2001 | IP: Logged |

savebabe
Frequent Contributor (1K+ posts)
Member # 9847

posted

I agree with CaliforniaLyme, it sounds like a co-infection along with lyme disease.

The first thing you have to do is find a llmd. They will run the proper tests, and figure out a treatment plan for you.

Good luck and stay well.

Posts: 1603 | From ny | Registered: Aug 2006 | IP: Logged |

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