posted
Hi for the past almost 4 years I have been sick, it started with what seemed like a sinus infection then began to also include horrible acid reflux,
then along came severe panic attacks and feeling of a shortness of breath even though the pulse ox always show good, along with this start tennis elbow type symptoms.
5 days ago I got the Western Blot test but not quite sure if I am taking the right path as I see alot saying that ELISA and Western are not the way to go.
I have not gotten results back of my Western but hoping this can be a start to cure my problems that doctors have not been able to discover what is,
I have been scoped into the stomach, sinus surgery that did not help what so ever then more allergies and even more allergies to medicines especially sulfa drugs. Anyone else out there have any opinions?
posted
I forgot to mention along with all these symptoms I get a serious equilibrium issues as well.
Posts: 10 | From Ohio | Registered: Sep 2013
| IP: Logged |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hi Ohio,
I'm sorry you've been having a rough go of it.
You're in the right place-most of us had several diagnoses and procedures before our lyme dx.
First things first, you need to find an ILADS trained MD.
I was in the same mindframe as you. Wasn't sure if I had lyme, knew I was feeling terrible etc.
Seeing an LLND (in Canada we don't have any practicing LLMDs) was the best money I ever spent.
An LLMD or LLND, will do an extremely thorough exam, symptom history, possibly neuro exam and baseline bloodwork.
Lyme is never diagnosed on tests. Lyme is a clinical diagnosis, and sometimes (not always), the tests support that dx.
You won't know if you have lyme until you see an LLMD or LLND and they assess you.
In the meantime, good for you for asking questions. An open, inquisitive mind will ensure your success in finding out what is causing your systematic symptoms.
If you post in Seeking a Doc, be sure to put your location in the header, so folks from Ohio will PM you with more info so you can find a doc.
Best wishes
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
posted
Thanks GretaM for your quick response, I was in hopes the wait for the Western was going to be an answer but from what I am hearing it unlikely will be, I have been given some information on LLMD's in Ohio, was hoping the local doctor could atleast get the test and then move from there, I am currently on 2 times a day Doxycycline Hyclate 100mg, until results come back in.
Posts: 10 | From Ohio | Registered: Sep 2013
| IP: Logged |
droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
My story exactly from 4 yrs ago. Including stomach scopes, sinus, equilibrium problems, pain, panic, shortness of breath. I'm also in Ohio. Skip the W. blot and ELISA. They won't tell you anything and are less than 50% accurate. Just get in to see an LLMD asap and let them take it from there.
posted
Still impatiently awaiting to see the Western Blot test to see if there is any bands at all, so I can then possibly approach an LLD, or possibly try to get my doctor to understand ILADS.
Posts: 10 | From Ohio | Registered: Sep 2013
| IP: Logged |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hi Ohio,
You shouldn't need a WB to get in to see an LLMD.
An LLMD will rely on tick exposure, health history, symptom history etc for your dx.
I felt kinda silly approaching my LLND to even ASK if there was a possibility of even having lyme.
Maybe you feel like that, but rest assured, an LLMD won't make you feel silly.
And please, for your mental health, don't try to convince your doc about ILADS. If your doc is only giving you 200mg doxy per day...rest assured your doc is an IDSA doc.
But, on the plus side, 200 mg of doxy may be hitting some coinfections, so it's still good to keep on keepin' on until you can see an LLMD.
I'm pretty sure you don't need a referal from your doc either...you can probably phone the LLMD's office directly.
Forgot to mention to be careful of the sun while taking doxy. I got a nasty sun/doxy reaction in the spring.
Best Greta
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
posted
Starting to feel a little in different about it , wife said since most people talk about not being able to walk and more extreme things happened to them,
since no one throws out theirs started different and they didnt start with a major sinus infection and then acid reflux and also panic attacks, and equilibrium problems she seems to think I dont have the disease and it has to be something else.
I guess that makes me feel a little more loss of hope that I have possibly found the right direction.
posted
Mine started with loss of balance, stomach problems and frequent sinus infections.
It can start in all different ways for each of us. I would definitely see a LLMD/LLND.
Posts: 486 | From USA | Registered: Jan 2012
| IP: Logged |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Mine started with an all over body rash, speckled, sore throat and sinusitis.
This lasted for 4 years.
Then deep bone and muscle pain. (fibromyalgia)
Then IBS for a year.
Then bad anxiety and depression for a year.
Then IC for a year.
Then migraines.
Then multi ligament and tendon failures.
Then migraines.
The neuro problems took 12 years to appear.
Everyone is different.
You're wife is right, untreated lyme progresses to more disabling problems. Could take 1 month, could take 40 years-depends on the person.
Some people have had lyme for 30 years before starting treatment.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Hey man, I talked to you on phone the other night. Please keep in mind lyme shows up different in everyone, everyone has different co infections. For instance some have mycoplasma which causes sinus issues some don't.
Not one case of lyme is exactly the same. Plus I think you should really, really at least see that dr we talked about. At worst, she can def help with your sinus issues.
Plus , I think most have had sinus issues at one point since lyme is an immune system illness.
posted
Thank you Lymetoo, yes currently still on the Doxy 100mg twice a day for now until results from Western blot come in to regular doctor then approach her to see what those results are. I realize the doxy alone is not curing me but feeling slightly a little better on it.
Posts: 10 | From Ohio | Registered: Sep 2013
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic