New Here - Need help diagnosing my mother's symptoms
Hi everyone,
I'm new here. I am hoping to get some help concerning my mother's possible Lyme symptoms. We're kind of at the end of our rope. She has been suffering for the past six months with what we think are her normal rheumatiod arthritis symptoms, but now we're not so sure.
She just had shoulder replacement surgery, so she is dealing with that pain on top of the other difficulties. I will give a brief background...
My mother is 78 years old and has suffered with rheumatiod arthritis since her late 20's. She went into remission many years ago, but has had recurrences.
She did have Lyme Disease several years ago, and was treated for it. She had major back surgery, due to severe pain in her back. After surgery, her back did not get better. She was diagnosed w/Lyme soon after that. Upon completion of an antibiotic regimen, her back pain disappeared.
She was bitten by a tick about 2 months ago, but she may have been bitten other times as well. She has cats, and they love to share their ticks w/her. Even though she runs the risk of a Lyme recurrence, she can't bring herself to give them away.
Here are the symptoms she is currently dealing with. I am really hoping some here can shed some light on them.
1. Stiff, painful neck
2. Fevers that begin at night and go through the night.
3. Night sweats
4. Severe dizziness (she had an MRI and it was concluded she has labyrinthitis, but she has suffered with dizziness on and off for a few years)
5. Right now, she has a badly swollen, painful knee.
6. Pain in her groin on the same side as the swollen knee.
7. The other knee is slightly swollen, but not as painful as the other.
8. Intermittent bouts of nausea
9. Post-nasal drip and coughing
Does this sound like it could be Lyme? She has been told by one of her rheumatologists that a Lyme test would show positive anyway due to the arthritis. What should she do to get a diagnosis?
She is suffering terribly right now, and I want to do all I can to help her.
Re: New Here - Need help diagnosing my mother's symptoms
Hi Lisa....so sorry to hear about your Mom...sounds like she has really been through the mill....
How long do you think she has had lyme the first time she was treated? How long was she treated for? What was she on and do you remember the dosages? Very well could be that Lyme has been her problem not arthritis....beings there are so many things it mimics....
Has she been retested lately? I am sure someone will come on and help turn you in the right direction for a LLMD in your area....
the remark about lyme would show because she has arthritis...just my opinion but lyme will show IF SHE HAS LYMES....all the symptoms you wrote are lyme symptoms...you live from what i have read from other post in a very highly populated area for lyme....
My thoughts get Mom back on antibiotics...it took me 6 years of constant antibiotics to get to where i am now...just went back on an alternative tinctures for lymes after a year off of med's.....
Good Luck Lisa....I'm sure Mom feels horrible....your awesome for looking into other things .....
Hugs to you both!
Re: New Here - Need help diagnosing my mother's symptoms
Hi,
The problem of the ticks on the cats can easily be remedied with Frontline, a flea and tick treatment which is available through a veterinarian. Another alternative is not allowing the cats to roam outside, most vets recommend keeping cats indoors anyway.
It is possible that the treatment your mother recieved was insufficient. Lyme can remain dormant in the body and reappear during a time when the immune system is stressed.
In addition to Lyme, ticks carry several other co-infections and many who have Lyme have one or more of these as well. If you look through the forum, find a poster named Ticker. Click on her name and then go to where it says view all posts. She has listed an extensive list of symptoms. The only one who can competently evaluate your mother is a Lyme literate medical doctor. Someone here should be able to refer you to one. I also strongly recommend contacting a Lyme support group or the Lyme Disease Association as they can be great sources of information and support.
Re: New Here - Need help diagnosing my mother's symptoms
Thank you, Tinuviel and jojo,
My mother was diagnosed many years ago, but I don't remember what they prescribed. She is going to her GP tomorrow. She is really concerned, because her one ankle is beginning to swell.
Yes, we do live in a densly populated tick area. My older dd. had Lyme disease when she was five.
My mom does use frontline on her cats, but they still bring "stray" ticks in.
I will post an update when my mom's bloodwork comes back.
Re: New Here - Need help diagnosing my mother's symptoms
Hi Lisa and welcome. I am so sorry to hear that your mom is suffering so.
I hope she finds out what the trouble is and that she gets better soon.
Just a note ... not all labs that test blood for Lyme use quality materials. When I got sick (thought my symptoms were due to ear trouble as well), I was tested for Lyme by my GP through a local lab and it came back negative.
For some dumb reason, the CDC says to do the ELISA test first to determine if a person has Lyme. The ELISA is the most unreliable test. Go figure.
Anyway, you may want to consider having her blood sent to a lab called Igenex. They are in Palo Alto CA. You can order the test kit right from their web site and her GP can draw the blood and sign the paperwork.
I had my blood sent there and it came back positive so I finally began treatment and I am begining to feel better.
The co-infections that Tinuviel mentioned are important too. Most ticks infect us with more than one bacteria.
I hope things work out for her.
You're a terrific daughter to be here searching for information for her. She's lucky to have you around.
Re: New Here - Need help diagnosing my mother's symptoms
Welcome
Your envolvement shows your love and dedication to your mom. Symptoms sound lyme to me. No two people have the same exact symptoms. CDC say lyme testing is a laugh. MOST TEST ARE NEGATIVE AS THE ANTIGEN THEY USE TO TEST IS NOT THE HIGHEST QUALITY. YOU CAN PULL UP Igenex in CA and get information from the web site. Also there is some controversary that Igenex always gives positive results. My was indeterminate and I did have it 19 yrs ago. A friend of mine had the test done and she was negative. No lab is 100% accurate but Igenex is the nextbest thing.
Please also do the test on the co-infections. Most of us have several of these also and they complicate treatment.
I hope someone will come on soon and refer you to a good LLMD.
Re: New Here - Need help diagnosing my mother's symptoms
Check out Lyme and Rife. Rife machines are can be an effective treatment for all kinds of infections, including rheumatoid arthritis.
Look on the web for testimonials for Rife machines and arthritis and or Lyme. They are harder to find thanks to the FDA, but they are still out there. These testimonials are awesome!!
Also I recommend the book "Lyme Disease and Rife Machines"
If you read the testimonials online and want to get one, go for an EMEM3 digital. I recommend this one if she is older and in pain, because there is nothing much to do except sit there. The machine would sit on a nightstand while it's going.
Re: New Here - Need help diagnosing my mother's symptoms
Hi everyone,
I just wanted to post an update. My mom's Lyme test came back positive.
They have prescribed amoxycillin for three weeks. We are hopeful that it will have her feeling better within a couple of weeks.
Re: New Here - Need help diagnosing my mother's symptoms
Hi Lisa......glad you got Mom to get tested...sad to hear it is positive...but now you know how to treat her...I don't know if you have read and researched about Lyme...alot of Mom's problems will go away with the RIGHT TREATMENT....
3 weeks of antibiotics is a step forward...but sounds from the way I read your post Mom has chronic Lyme...and 3 weeks Lisa is just not enough...this affects the mental....physical...every inch of her poor body...try to get her to go to a doctor that will treat her longer and more radical...she nees alot of help sounds like...have you asked on here for a LLMD in your area.......
Re: New Here - Need help diagnosing my mother's symptoms
Hi Lisa, welcome to the board!
I am sorry your mom is so sick. She may not have been treated aggressively enough initially or she may have been re-infected.
I am glad she tested positive, so she can get treated. What dose of Amoxicillin is she taking? Three weeks of treatment is never long enough for Lyme. Lyme needs continuous, aggressive treatment. Besides Lyme disease, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. As many as 60% of people who have Lyme are co-infected. It is important to be tested for these by a Lyme reputable lab such as IgeneX. To me, many of her symptoms sound like they can be from Babesiosis also. Was your mom tested for these?
It is very important to see a Lyme knowledgeable doctor. Many doctors do not understand these diseases and follow outdated protocols. Untreated or under-treated tick-borne illnesses can be serious. If you would like a doctor recommendation, let me know.
It is also important to learn as much as possible. I recommend reading "Everyting You Need To About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner and Dr. Burrascano's treatment guidelines. He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols.
Your mom is lucky to have you helping her. I hope she feels better soon.
Hi Lisa....so sorry to hear about your Mom...sounds like she has really been through the mill....
