posted
Met with a Dr today- confirmed Lyme. Not only Lyme but lyme for over 20 years and told it was just mental illness and psycho somatic pain in other areas of my body.
Pump me full of meds none work pump me full of about 15 different kinds. tell me its in my head- nothing is wrong- we cant find anything wrong. since 15 years old.
Finally at 39 one Dr, one Day, says " you need a lyme test from Igenex" And finally im not crazy and the Dr that reads the test says to me "honey im so deeply sorry you've suffered since you were a child- its in black and white here on paper" And since I carried a child at 23, she too, needs to be tested. I'll want to DIE if she has it.
I've felt like half a person for over 20 years on disability for worsening depression all the time- suicide attempts.
Doxycycline for a year or more? They are testing for co infections right now. Is Doxy safe for over a year or so?????
forgive me- the news today hit HARD xx
Posts: 17 | From Vermont | Registered: Mar 2012
| IP: Logged |
momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Sweetness...this is a red-banner day for you...you have a diagnosis and a plan to get better...after so many years my heart hurts for you.
This is a new chapter in your life and you will find that it will be so very worth it.
I am so thankful that finally you found a doctor that is helpful.
You will be fine and your daughter will be too.
Today you have been vindicated.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
| IP: Logged |
fflutterby
Frequent Contributor (1K+ posts)
Member # 28081
posted
Just be happy you finally know and know it takes a very long time to treat. I hope you are seeing a good LLMD. There is light at the end of this deep dark tunnel. God bless. Read the Progress and success stories.
Also know that children get well a lot faster than we do. Be strong and fight.
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
| IP: Logged |
posted
I just found out I have had it for 15 to 20 years...
Went to one dr. Who would send me to another ..so on and so on..until I finally gave up looking forr what was wrong with me. Gave up on all drs. And went to an ND and she did a western blot...found lyme
I am now going through the happy I know whats wrong to the angry it wasn't found years ago considering I now know I had all the symptoms but nobody ever listened..
Hang in there..I have beenn having the week from hell..feel like a war is going on inside me....but just resting and fighting...wanted to give up a few times, but life is so worth keeping.
I started doxy 6 months now...feel worst than better but being told it wiill get better. My son and daughter also will be tested and yes its harder for me to see them sick so we have to stay strong for them.
Hope you feel better soon...keep the faith
Posts: 78 | From connecticut | Registered: Mar 2012
| IP: Logged |
fflutterby
Frequent Contributor (1K+ posts)
Member # 28081
posted
I gave had it for a very long time too. It does get better. I couldn't drive, work or take care of my family the way I needed to in the beginning. It was hard and I wanted to give so may times.
I kept going and now I am working 30 hours a week, and going all day from 6 am to 11pm. I get tired but my pain is mostly gone. I still have some bad days but have come so far in 19 months.
You can do this...keep the faith !
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
| IP: Logged |
now you can start down the path to getting as better as you can. Don't think of coulda should woulda with this stuff, we're here now, and now you can do something about it :-)
Posts: 844 | From CA | Registered: Apr 2010
| IP: Logged |
posted
This is such good news for you! Keep on this path and look forward to a new life. I am glad that you continued to look for answers and believed in yourself for so long. That is positive and you should be so proud of yourself.
If your daughter has Lyme it is not your fault. Does she show any symptoms?
Hang in there. I have been on doxy for almost a year and while it has kept some of this at bay it is not the full answer for me. There have not been a lot of side effects. I remember herxing a bit the first couple of months and last summer I burned very easily and had to be careful about the sun.
Keep us posted. Hang in there and try to envision what life would be like without feeling like this.
I am glad you finally finally had a doctor apologize for what you have been through because nobody thought to test you for Lyme.
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Glad you found LN. Hope you know to check the box so you will get updates to your thread via email notice.
I was on LN a long time before I realized there was a little box to check.
I could not handle doxy...FYI...but there are plenty other abx for doc to prescribe.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Your post made me cry. So many of us have been there. I don't want to add more but just doxycycline, alone, is not a good idea.
Combination, rotation, is vital.
Support measure for your liver and adrenals are essential to being able to tolerate treatment.
And, to be sure you are treating the right thing, it's important to also be assessed (even if just clinically) for other tick-borne infections by a LLMD who is familiar with them all.
As your current doctor is willing to treat for a year, she/he may be ILADS educated but if JUST doxy, is not.
Also know: DOXY CAN CAUSE SEVERE SUN BURN from the slightest exposure.
Minocycline can be used instead for summer but it needs to have liver support, for sure, to help the ears better tolerate it.
One step at a time. I hope you find all you need to move forward.
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
Yes, i've learned we are going to rotate my antibiotics- i thought it would just be doxy but no
in two months we are doing another one
two months later another- then re-assess where we are.
Posts: 17 | From Vermont | Registered: Mar 2012
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Just be sure your doctor is ILADS-educated.
Does her plan come close to the Burrascano guidelines? (In the "Diagnosing" thread.)
Not all LLMDs practice the same way as each patient is different - and they also have found what they think works best but be sure to look over Dr. B's guidelines so you have that as a frame of reference
and for the self-care section. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| 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