posted
Hi! I didnt post an intro before because...well...that can get long and complicated and I see that I am no where near alone in that. My husband, myself and my son all have chronic lyme and no doubt secondary issues. We were never treated for lyme and have a a bunch of other diagnosis. I knew nothing about lyme last Friday except that it was related to ticks and have spent a week reading and learning. Stupid me never had seen a rash pic until last weekend either. Seeing the bullseye pics and the other rash pics floored me and took me back to 10 years ago when we lived in NC. I was young and naive and trusted the docs to a certain extent. family members said to trust the docs I mean afterall, they did go to med school. We were healthy when we moved there and started getting sick with all sorts of weird stuff within about 3 months. Within a year I went from being healthy to having Rheumatoid arthritis, Mitral valve prolapse with issues, eye surgery [had astigmatism before but eyesight got rapidly worse], Fibromyalgia, and surgery for endometriosis] The endo surgery was not approved by the ins. co and nither was me finding the doc. Primary care doc said I had nothing wrong and it was all in my head and gave me Chicken soup for the soul to go home and read. I found the endo doc and had the surgery and then went back to the primary duck and threw the book at him literally. Even after I was kind enough to show him the test results from endo doc, he still insisted there was nothing wrong!
Hubby had developed alot of allergies, skin rashes, muscle pain, major fatigue, eye/face twitches that moved to other areas, intestinal issues, etc etc etc.. Nothing wrong with him either...
In the 2 years we lived there, we didnt get any kind of meds from primary duck. It took a few threats on my part to give son the pink stuff to which the little guy promptly threw up. The grape stuff was a bit better. I had to push to get duck to give him the stuff for 7 days instead of 3.
Got fed up with all the ticks, chiggers and copperhead snakes, so we moved near family in PA. Found out quickly what black mold and living near a chemical plant and toxic dump can do and how it aggravated all the other symptoms we had. PA doc throught lyme at first but we never got the tests. We were too busy trying to keep up with the syptoms, getting new ones and being chronically sick with asthma, bronchitis, sinusitis. Doc was stumped as to why we were getting worse and after 3.5 years tld us it would be best to move away from PA. We hadnt responded ans actually got worse on antibiotics. [after 30 days on them] Son's asthma was life threatnening at that point. Right before we left we found alternative medicine and got on a strict regimin of a near raw diet and a bunch of herbs and supplements. It cleared the sinusitis/bronchitis and relieved alot of daily symptoms. That was after a month. We moved to KS in 2004. swore off ducks unless absolutely necessary. The life threatening asthma went away. The other symptoms are getting less manageable and less predictable. The heavy fatigue is back with a vengence and the arthritis is now everday no matter what we eat or what chemicals we are around.
Up until last Friday, I thought this was environmental illness and I knew that finding the right bat was all that was needed to keep symptoms at bay and keep improving until we were sypmtom free.
Then I found a Lyme symptom list and remembered NC.
And here I am. I do have questions, but my head is spinning at the moment.
I guess the biggest question I have at the moment is....
No matter what I do, unless we get treatment, this will get worse?
How does insurance play into seeing an LLMD? [if my ins. doesnt cover treatment, then what?]
Local duck seems to be following CDC/conventional med. standards to a T. I dont know if she will be one willing to learn. Just met her and seen her Wednesday. So far says we have arthritis and of course ordered the first of the 2 tier test. If it comes back positive....[ya'll know the rest]
Sooo....if insurance allows me to see a doc out of network and I pick an LLMD, whats the likelyhood of reimbursement?
just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Hi KS MOM, I am your neighbor,,,next state north of you(north part of that tho). You are in tremendous LUCK make an appointment, jump in your car,and travel ONLY about 250 miles(about 4 times closer than most of his patients) and go see one of the world class LLMD"S for real,,, south and mostly east of you,,take all three of you. It will be the BEST doc appointment you have had in ten years,guarenteed.
If you havent figured out who it is to see I guess you have to PM me for additional information. They dont let us post docs names or addresses,towns here on the PUBLIC boards!!
Dont know how?? Post that here,we will SAVE you, no doubt!!!
seek this quality treatment and get your lives back!!!I remain--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
| IP: Logged |
just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
At the top of the heading where my name is,,,is an icon that looks like two people standing togethr in front of an envelope,,,click there,,,e-mail me like and it will deliver it straight to MY house!!!(Thats a PM how to)(PM= personal message)(for YOUR eyes and my eyes only)
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
| IP: Logged |
lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Sounds like Don has you under control, but yes, you live very close to some of the world's best llmd's, and there aren't very many of them around the world.
You get to these doctors, and you will be on the path to a better life. My health insurance has paid for my oral antibiotics even if my doctor was out of network. IV treatment is another ball game.
Find the "Newbie links" at the heading of the medical forum, and take the time to surf the links there. You may also PM me if you wish. I am in Alabama, but I did see an angel of a doctor in North Carolina for quite a while, and I have seen doctors in New York and Connecticut. My doctor is now in LA.
Take care you're on the right track.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey there...
Just want to say "welcome" to LymeNet.
Sorry you need to be here.. but it is good that you are researching and learning. So sorry your family has had to go through this nightmare.
I'd chat more but am nursing a headache.. so can't think so good right now to make much sense. Will chat later I hope. Just wanted to toss in a howdy do.. to you.
you have found a really good community here on the boards... i'm a newbie too, but everyone is caring... and they want to help... and don't worry if they don't all agree on the details... they all agree that we are in this together.
may your days be filled with hope.
-------------------- When I lost my grip on Faith in the maze of illness, Hope gently clasped my hand and led on.
RuthRuth Posts: 478 | From California | Registered: Jan 2007
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Ks Mom,
I was dx with Lyme last October....before I found this board.
My husband was just dx. with Lyme and I just sent my children's bloodwork to Igenex to be tested.
It is a scary and confusing place to be....knowing something is very wrong, but not knowing what it is.
Especially, if you believe your children may be sick also.
You need to find a Lyme Literate Medical Doctor.
I see Don knows where you are.
He is a wonderful person!!!
Let us know how we can help you.
This board has been my lifeline....
Sending healing thoughts and prayers.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
W E L C O M E !*)!*)!*)!! !)!*!*)!_)!*)!*)!*)!*)!*!
Get a good doc and get better*)!*)!*)! Sounds like you all need a doc!!!!!!!!!!!!! Don't get too discouraged too often- but you will be now & then no matter what- it is a long road to wellness but you need not walk alone*)!*)! We shall be with you in 'the Fellowship of the Spirit'!*)*))*!
Lyme sucks!!! But getting better makes it all worthwhile- and if you get a good LLMD and follow his/her advice- you will get better!!!!
Re insurance depends on your insurance and even people with the same insurance have differing experiences- (comes down to luck I htink! I know a doctor with Lyme who gets refused coverage while others with same insurance GET covered- makes no sense!)
Take care- and read up on Babesiosis, Ehrlichiosis and Bartonella!)(*!)! Best wishes, Sarah from CA
-------------------- 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 |
Hubby says I cant live on the computer today, so I have to be brief and post a general.
Thank you! Thankyou! Thank you! for the welcome and for TRULY understanding what we are going through!! [feels good to know I can say I am having a brain fog moment and people genuinely understand ]
Hubby is on board with the need to see a doc and looks like ins. is less restrictive than our old co. Hopefully that proves true.
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!
![[Big Grin]](biggrin.gif)
![[Smile]](smile.gif)
![[Cool]](cool.gif)
]
Printer-friendly view of this topic