posted
How many couples do you know who both have lyme? My husband has had "fibromyalgia" for over 10 years. It is getting worse and worse and he is constantly exhausted. My LLMD wants to test him, but we cannot afford it. He is covered by the VA and they are totally ignorant.
So he went to see the local doctor who treated me 24 years ago and missed it. He thought that now that I have a positive test and am responding to Bicillin the doctor would rethink things.
Wrong! He won't order the C3 or C4 test because he does not know how to interpret it. The test is inexpensive and definitive of any kind of infection. My numbers on it are sky high.
He said that without a rash he can do nothing. So I looked up my old records from him. Sure enough, there it was: rash of unknown origin...dermatitis...treat with Benadryl! That was in 1986!
Now this local doctor said he has one lyme patient....one who showed him the rash! God knows how many others have it and are being mistreated!
My LLMD is so expensive. We are going to try another route to get him tested...a more sympathetic doctor. My LLMD said he treats 150+ couples. He said that either they are bitten by the same kind of ticks or that they get it by sleeping close together. They found that female mice contract it just by cuddling together.
I am so angry I am having trouble typing! When will this nightmare be over???!!!
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
| IP: Logged |
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
I'm in a Lyme couple. We were both undiagnosed when we met in year 2000. On our first date, we compared notes on all the local healthcare providers. We'd seen them all!
Our symptoms do not overlap one bit. I was exposed in OK in 1990 and am a complete neuro case. My husband was exposed in CT in 1997 and has more muscle and nerve pain. We were both diagnosed in 2008.
It's expensive being in a Lyme couple, but I wouldn't have it any other way. Our lives are unfathomable to anyone else.
Who could possibly understand the parade of revolving symptoms, varying levels of disability, shelves of meds and supplements, ever-changing diet/lifestyle restrictions and utter distrust of the medical system that go with Lyme disease? At least we have each other!
Farraday - I hope you find treatment for your husband. You are with an LLMD. Will s/he base treatment on a clinical diagnosis, so you can skip some of the expensive testing? Can you treat with herbs?
As for the cuddling mice, I don't think you can pass Lyme that way. But I'd love to meet the lab assistant whose job is to make sure these mice stick to cuddling!! (If they are all females, I suspect they share the same water source and infect each other through saliva.)
posted
Thanks so much to both of you! I just got off the phone with my son. He has lost his house and is planning to move his wife and three kids and himself here with us. He will have to clear out and make extensive repairs to our house. Naturally he is worried about infecting them all.
I agree that humans are more hygenic than mice. And I make sure the kids wash their hands frequently and are showered after playing outside. But I advised my son to call my LLMD for his opinion. We certainly don't want any more victims to this misery!
He also points out that my poor exhausted husband is worn out from 22 years of caring for me and probably from the disease as well. He plans to talk with my other son to see if they can come up with the money for his tests and treatment.
Our family is certainly in crisis. His wife is mentally ill and unable to do much at all. The kids need us desperately and are very happy to be here. We have no trouble at all with them and enjoy their company.
One child is somewhat autistic and I work with him quite a lot. The other two are stars, both academically and socially. They all go to a small Christian school.
But the huge task of clearing out (my husband is a terrible hoarder) and repairing overwhelms me. My son suggests that we move in with him until our house is fixed. He is renting a lovely home but it would be a tight fit for all of us.
Our home is large and we can subdivide it quite well with a little help. Our sons are both very handy and very loving. I thank God for them every day!
Our daughter has disowned all of us, for some unknown reason. I think her dysfunctional husband is behind it....he is terribly jealous of our sons' success. I don't think he has ever had a job in his life. She supports him.
My husband needs to work and make money for repairs. But he is too exhausted. He is highly educated, holds 12 patents and is capable of a high income. I open the door of his office and find him sitting there with his head in his hands.
I used to work as a developer of business parks and represented our part of CA for economic development. I brought more than 6 large high tech firms to our area and built several large and beautiful parks. And our President wants to find ways to create jobs! Helllooo....!
So here we are, both of us at a standstill, neither of us making the contributions to society that we are capable of.
And I am more upset by his illness than I am of my own. He is so upbeat, uncomplaining, humorous. To see him ill is terrible for all of us. We are used to his happy, funny outlook on life.
BTW, a side note. I looked up my old medical records from the local doc who saw my husband today. Guess what I found: "rash of unknown origin, probably dermatitis, treat with Benadryl". That was 2 years before I collapsed in 1988.
So more than 20 years later and he still does not know how to recognize and treat tick borne illnesses...and has no interest in learning.
Everyone who knows me tells me to write a book. I guess I could. But I want it to be humorous, entertaining. I learned long ago that you can sell almost anything if you use humor. Now I have to figure out what is funny about this miserable mess!
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
| IP: Logged |
onbam
Unregistered
posted
LS--I am so sorry to hear that.
IP: Logged |
IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
My husband and I both have Lyme. I have had symptoms for the past 22 years and was dx 2.5 years ago. The hubby didn't start getting symptoms until 3 years ago. We've been married 12 years.
All three of my children have Lyme as well. Only one with a known tick bite.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
| IP: Logged |
BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
IckyTicky- that sounds so exhausting. I can barely deal having it on my own :/
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
| IP: Logged |
posted
I am one in a lyme couple. Neither of us knew we had lyme when we met 8 years ago. My husband got lyme up in MASS and he has nuero lyme symptoms, I got lyme in NC and my trouble is with fatigue and arthritis type stuff.
However, since my husband isn't as tired, he can work, and I am on disability. But, his CD-57 is 12, and mine is 25?? But, I see my husband getting more and more tired weekly. I see the train wreck coming, but, my husband won't treat because it makes him more sick.
Oh, my daughter has lyme, but she has been treating for a year, and I think we will be able to stop her treatment soon. That is very positive!!
Posts: 893 | From Florida | Registered: Dec 2008
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
We are also a Lyme couple. We got it independently of each other. He got it in CT about 12 years ago. I got it in CT about 30 years ago, but was rebitten about 6 years ago and that is when I got really sick. Did not know I'd had it all along, fairly dormant for years. We did not transmit it to one another, however I did transmit it to both my children through birth.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
My husband and I both have Lyme.
We hike a lot, so may have gotten it independently.
I had the bull's eye rash in 1998, but tested negative.
Finally tested positive in 2005.
My husband's Lyme situation is much less severe than mine. He doesn't even nap during the day!
We're coping......
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
farraday - if you take things in small increments - you can actually get alot done. Don't try to do too much but do a little every day. I find that this helps in trying to get large tasks accomplished.
You also may want to look into herbal treatments for Lyme. The herbs can be quite effective. You can also go back to abx when you are able or if needed. This way, at least your husband will be doing something to get rid of Lyme.
Stephen Buhner & Dr. Zhang both have good protocols - Nutramedix & Raintree, too.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| 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