posted
Please someone help us find the answers. My daughter has been sick for a year and a half. The symptoms she experiences are so bizarre. Aside from the "normal" symptoms of fatigue, brain fog, weakness, numbness, night sweats, headache, naseau, she now has painful, very cold feet. She had a positive test for lyme, but according to this test, the dr. said it was a recent infection, and she was bitten over a year ago. The second lyme test was supposed to check for DNA of lyme and for coinfections and it came back negative. She was treated for three months on antiobiotics and hasn't been on any antiobioics for 4 months now, but she is not any better. She is now on antiepressents because of depression, which I think is being aggrivated by her illness. She's been to so many doctors and noone is helping her. Her next dr. she will be seeing is an immunologist at John's Hopkins, but that isn't until dec. and I don't know if this will be another merry go round. The lyme dr. she say said that she should be feeling better by now and maybe she has something else wrong with her. I don't even know where to turn anymore for help. One doctor said she should be admitted to a psychiatic hopsital. It goes on and on and my daughter keeps sicker and sicker. There has to be someone out there who can help us. Please, I am desparate to help her.
Posts: 11 | From Maryland | Registered: May 2007
| IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I'm just breaking up this post for us neuro-Lymies.
quote:Originally posted by fedup: Please someone help us find the answers. My daughter has been sick for a year and a half. The symptoms she experiences are so bizarre.
Aside from the "normal" symptoms of fatigue, brain fog, weakness, numbness, night sweats, headache, naseau, she now has painful, very cold feet. She had a positive test for lyme, but according to this test, the dr. said it was a recent infection, and she was bitten over a year ago.
The second lyme test was supposed to check for DNA of lyme and for coinfections and it came back negative. She was treated for three months on antiobiotics and hasn't been on any antiobioics for 4 months now, but she is not any better. She is now on antiepressents because of depression, which I think is being aggrivated by her illness.
She's been to so many doctors and noone is helping her. Her next dr. she will be seeing is an immunologist at John's Hopkins, but that isn't until dec. and I don't know if this will be another merry go round.
The lyme dr. she say said that she should be feeling better by now and maybe she has something else wrong with her. I don't even know where to turn anymore for help. One doctor said she should be admitted to a psychiatic hopsital.
It goes on and on and my daughter keeps sicker and sicker. There has to be someone out there who can help us. Please, I am desparate to help her.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Fedup,
Please get your daughter to a LLMD as soon as possible.
I have cold feet and hands too. Part of it is Reynauld's syndrome,
And now I also know that POTs and NMH can contribute as well.
Please post in Seeking a Doctor so that your daughter can get the help she needs.
I am a Mom treating two young children, myself and my husband.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
EEEK!!! My dear FedUP!!!!
I dunno where you got this doctor recommendation, but you must find another one!! Post in "Seeking a Doctor."
Frankly, after a year's infection, three months of treatment "ain't nuthin, baby."
Also, depends a lot on the treatment.
Sometimes, co-infection tests can be negative but she can still have co-infections.
Where was she tested?
Babesia, for example, has at least 16 strains. ONLY TWO ARE TESTED FOR.
Most LLMD's worth their salt know that.
The famous Dr. J is more or less in your backyard. I'd think about a consult with him, even, in your situation.
PLEASE DON'T GO TO HOPKINS. I've forgotten more about lyme than they know.
People smarter than me (i.e., most everyone on here) will hopefully pipe in. But your daughter has NOT had the best care. Her supposed "LLMD" is pitching in the proverbial towel mighty early. I smell a duck. (Our pet name for non-LLMD's.)
Get better help fast!!!
Hugs,
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
It doesn't sound like the doctor you refer to as a "lyme doctor" is really a Lyme Literate Physician (LLMD). He sounds more like an infectious disease doctor who doesn't believe in long-term Lyme treatment!
I would get your daughter to an LLMD. Post under seeking doctors and someone will post the contact info for one near you. Many of us have to travel to our LLMD's as there really aren't very many of them.
Lyme can test positive for years after exposure, even in the bands that indicate recent exposure. I can't adequately explain why, but it's actually more common than it showing as an old infection.
She does not have psychiatric problems .... I was also told it was in my head .... please take her to an LLMD and you will finally feel that you have someone to help. From what you say it sounds like she has been undertreated.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Like everyone else has said, you need to find an LLMD. Then you'll be able to see your daughter get better. Most other doctors don't believe in long-term antibiotics -- but it's obvious they are needed. Just look at cases here in this community as well as with your daughter. The few months of antibiotics is usually NEVER enough to cure people of Lyme (unless it's caught RIGHT away). And then if there are co-infections, that means different antibiotics as well. Most non-LLMDs don't even know or acknowledge co-infections.
It angers me to here a doctor tell you that your daughter needs to go to a psychiatric hopsital. Sometimes I just don't understand the nerve of these doctors. They really lose their humanity somewhere along the line.
See an LLMD and quick. You'll finally be listened to and your daughter will be cared for with REAL care.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Dear FedUp,
You indicated your daughter's doctor doubted her positive western blot IgM because her bite was a year ago. Here is a relevant blip from Dr. C, a leading authority on lyme, explaining that just the opposite is true:
quote:Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Not to unduly alarm you, but this is something all LLMD's are well familiar with. Hope you can find one for your daughter SOON!!
Hugs,
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
I hope you post in seeking a doctor. I don't know who your daughters lyme doc was, but he certainly does not sound like a LLMD. A LLMD wouldn't throw in the towel three months into treatment and say it must be something else.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
| IP: Logged |
posted
I live in MD-sent you a pm
Posts: 561 | From eastcoast | Registered: Aug 2006
| IP: Logged |
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Hi, I am sorry your daughter is so sick. Lyme is a complex disease and I fear and suspect mainstream Md's at John Hopkins won't be able to help you with Tick Borne Disease. Similar stories of people going to the Mayo Clinic, Standford you name it and no help was found.
Run don't walk to your nearest LLMD (Lyme literate Md) if you need help with finding one in your area, I can refer you to someone who has names of reliable lyme md's nationwide.
You can PM or email me at the site below.
Bottom line, she was not treated long enough, chronic Lyme treatment can last 3+ years. Mainstream Md's will not understand this, nor do they believe in "Chronic" Lyme. Depression, anxiety, Fibro, Chronic fatigue are their favorite diagnoses. We have all been there seeing many, many MD's, I saw 14 some have seen up to 40.
My advice, cut out all the Md's in between and please see an LLMD who can and will help your daughter.
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