Topic: Please tell my mom if you think she should be treated for lyme
bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
My mom was been bitten with a bullseye rash and severe flu symptoms twice, several years ago.
Both times she was treated with the standard short course of Doxy.
She says that after one of the bites she felt like she had arthritis in her feet for about three months afterwards.
Now she is in constant chronic pain. She says her neck and hips hurt, and she has a tingling pain down her legs.
She thinks the pain is mainly from arthritis, since she has bad osteo, and it runs in the family.
She also says that most of the people she knows feel this way at her age. She's in her 60's and lives in rural southern Connecticut.
Her insurance and income are very limited, so lots of testing and expensive doctor visits wouldn't be practical, unless quite necessary.
If she is sure she does still have lyme, then she is willing to see a doctor and let me help her with herbs.
My mom knows about lymenet, and what a great resource you are for accurate and helpful information.
My mother's name is Sue. Would you please write to her here and tell her if you think she may have lyme, if you think she should be tested for it and if you think she should be treated for it?
She doesn't have a computer, so I'll deliver the messages.
Thanks for your help!
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
| IP: Logged |
posted
Wow bejoy....I dont know if she has it or not! But if there is suspect, she has you as a tool of what to do to be sure. Or at least more sure than you both are right now.
Western Blot is a first start!!!!!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
| IP: Logged |
posted
I definately think it's a possibility -- two bullseye rashes and not symptom-free when stopping medication ...
60's is not old! Definately not old enough to accept all that pain every day.
I'd get tested, then take it from there. An LLMD would be the only one who could say for sure whether or not she has it. With Lyme being a clinical diagnosis and with bullseye rashes being diagnostic for Lyme, and LLMD might diagnose it even with a negative test.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
posted
I agree with Sixgoofykids. Even though it seems like she got early treatment, it's possible she needed a second round of abx.
I don't think there's any research that shows that one course of abx eradicates Lyme in 100% of acute cases.
If her pain started with the bite & bullseye rash and never went away, then it's a good indication that Lyme should probably be looked at again. I don't think tingling pain is normal at any age. That's generally an indication of a nerve issue.
Retesting can't hurt, but like Sixgoofykids said, it's a clinical dx. If she decides to get retested, I would definitely go the IGeneX route.
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
| IP: Logged |
adamm
Unregistered
posted
She can't afford not to address the possibility!
My grandmother was in exactly the same position ten
years ago, and now her dementia is more or less
paretic (a few days ago she was looking for tonic
water in a pan of lasagna.) I'm sure if she sees an
bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
My feeling is that symptoms starting after a confirmed bite, and continuing after treatment, means lyme was still present in her system.
Therefore it still is present, since lyme doesn't go away by itself.
There is no such thing as "post lyme syndrome." If you still have lyme symptoms, you still have lyme.
If she needs confirmation of this, the best way to go is to get an Igenex Western Blot and/or a clinical diagnosis from an LLMD (lyme literate medical doctor.)
Local Western Blot tests are notorious for being inacurrate and leaving out some important bands.
In addition, she may have one of the common co-infections that often occur with lyme.
Certainly she has arthritis, but I have to wonder how much this condition is exacerbated by lyme disease.
I also don't want to see her suffer from neuro lyme as I have, and as I know many of you have, if she goes without treatment.
Let me know if you think this assessment is accurate, okay?
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
| IP: Logged |
I agree with you on all of it except for using IGenex as a way to confirm if she has Lyme or not. Lyme testing is not definitive, even through IGenex. I think IGeneX is one of the best labs to use and is more accurate, but it's not full-proof. I wish it were. That's why research needs to be done to find better testing for Lyme.
I do agree with you on your mother seeing a good LLMD so a clinical diagnosis can be made one way or the other.
So a BIG YES, given your mother's history and symtpoms, an LLMD & IGenex Testing (to aid the LLMD in diagnosis) should strongly be considered.
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Bejoy and Mom,
I find myself somewhat in the same boat. I had my Mom tested
Via Igenex this past summer. She had several Lyme specific bands.
Denial is her middle name right now.
However, as her closest daughter in heart and proximity,
I can tell you that I am seeing a sure and steady decline.
Difficulty with pain in joints as well as decreased memory.
She is always tired.
I have encouraged her to get treatment which I will gladly help pay for.
I paid for her Igenex testing.
I would ask that your mother at least see a LLMD.
I am hoping to convince my Mom soon to come with me and my children to our LLMD.
It is so hard to watch her and know this will not get better without treatment.
I don't want her to end up with Lyme induced dementia.
She is 64 years old and probably one of the most vibrant people I know.
She is such an incredible person. I am so blessed to have her.
I just wish she would let me help her get treated. (soon)
Please see a LLMD. It is devestating for your family to see you suffer.
My best to you and yours.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
posted
Please get tested for Lyme disease! You have nothing to lose and everything to gain!!
I got my health back after being misdiagnosed for 42 yrs. Now I'm up to 49 since being bitten by many ticks.
Bejoy....Print out my story for her! [see below]
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I would say that your mom definitely should be evaluated by a LLMD and tested for co-infections.
She may be experiencing other neurological symptoms and attributing them to her age.
She does not want to end up wandering around a supermarket for 3 hours, when it should have taken her 20 minutes, coming out with things she got last time & having forgotten things actually on her list, having no idea what she did for all that time.
She may have trouble recognizing people she has recently met, when she sees them in a different place. Forget about remembering names!
She may have difficulty digesting information she reads. She may find that she has days when she can & days when she can't. Eventually the days that she can't would greatly outnumber the days that she can.
She may find the need to make lists & then lose them over & over again. She may find herself walking around looking for something & have completely forgotten what she was looking for.
She may find herself using the wrong words or having trouble finding words on the tip of her tongue.
She may have a lot of mood swings & bouts of depression and rage.
Many people would have a tendency to dismiss these things as signs of aging or some normal process.
It happens to people much younger than your mom, when they are undertreated or co-infections are missed. So if things like this is started happening, along with the tingling pain, I would say that's a probable sign that it's affecting her central nervous system.
GET HELP BEFORE IT GETS WORSE!!!!
The money she'd lay out for a good LLMD's initial consultation IMO would be well worth the peace of mind. They won't treat her if she doesn't need to be treated. So if she isn't still infected, (which in my non-professional opinion, I'd bet she is) you're really only looking at spending the initial office fee & labs.
When you think of the alternative of possible declining much more rapidly than she should, in continuously worsening pain & debility, and continuing to wonder....."Should I go get this checked?"
If I were her, I would not let this go until she gets worse. Personally, I couldn't do that to my child, who would have to helplessly watch me suffer and be able to do nothing to stop it.
Prayers for you & mom, Ali
PS- I'm thinking that an apparent lack of response to the initial treatment = co-infection.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
| IP: Logged |
bettyg
Unregistered
posted
hi bejoy and mom, sue!
bejoy, please pm me; i have some info on your state to share with you; please show your state IN YOUR PM to me as i can't remember 1 member from another when it's not in their profile ok!
sue, i'm 58; had chronic lyme for 38 yrs. this xmas; a tick off folks' live xmas tree got me but i didn't see it nor did i have a bulls-eye!
i too recommend igenex for western blot igm and igg tests, cost $190. bejoy, do you have my newbies package where i have detailed info in there about this???
i recommend fry lab in arizona for co-infection testing only because it is 33% cheapter than igenex!
does anyone have accurate $$ costs for fry vs. igenex co-infection testing? i had scott forgreen's $$ for fry; igenex i had from their paper copy sent to me.
has igenex increased their rates? they normally do twice a year. can anyone in calif. check this out and post here or a separate post so we can update our private data? BIG THANKS!
i'm on ssdi, and on medicare, so the tests were free to me from igenex.
sue, you aren't on disability already are you?
bejoy, you are an outstanding daughter looking after your mom who looked after you as a baby and growing up.
IP: Logged |
Cobweb
Unregistered
posted
My first impulse was to say-save the money for testing and use it for treating. A face to face consultation with an LLMD should be enough to diagnose clinically.
She's already had the hard proof of tick bite, bullseye, flu symptoms, arthritis-and inadequate treatment.
Her choice if she wants it to disseminate to the brain.
I'm working with a family to get their daughter to an Integrative LLMD-and it is so frustrating because I know it doesn't have to be that way.
Their daughter-now age 20 is bedridden most of the time-and her symptoms are classic Lyme Disease-but her tests at a local lab were not positive enough for their doctor to treat for Lyme.
So they go on in this miserable limbo.
People refusing to fully investigate the possibility of Lyme Disease through knowledgeable channels is a real button for me.
I hope I don't give into the age old excuse of "this is the way it is supposed to be when I'm in my 60's."
Sue-if you have untreated Lyme the worst is yet to come. You've already had proof of lyme disease. You do not have any proof of a cure.
It's up to you whether you want to get well, or whether you want to continue down the road of degeneration.
Lyme disease will acccelerate the process of aging-there is no denying that.
Give up or Fight back-what would you want Bejoy to do?
Take Care, Carol
I was ready to give up two years ago. I was slipping into Alzheimer's I thought. I'm not too far behind you in age-now I have hope and have become a willing participant in my life.
Sure I still ache-especially on rainy days. Many specialists were willing to say "well that's all just part of getting older" when they couldn't fix what was wrong. Now I know better-because I went to an LLMD.
I may always have some physical pain-but mentally I am improving and that is such a godsend to me.
IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Even if her pain is from osteoarthritis she could benefit from taking Doxycycline- look at this research!!! EXCERPT:********************************************* 1: Arthritis Rheum. 2005 Jul;52(7):2015-25.
Effects of doxycycline on progression of osteoarthritis: results of a randomized, placebo-controlled, double-blind trial.
Brandt KD, Mazzuca SA, Katz BP, Lane KA, Buckwalter KA, Yocum DE, Wolfe F, Schnitzer TJ, Moreland LW, Manzi S, Bradley JD, Sharma L, Oddis CV, Hugenberg ST, Heck LW.Indiana University School of Medicine, Rheumatology Division, Indianapolis, IN 46202-5100, USA. [email protected]
OBJECTIVE: To confirm preclinical data suggesting that doxycycline can slow the progression of osteoarthritis (OA).
The primary outcome measure was joint space narrowing (JSN) in the medial tibiofemoral compartment.
METHODS: In this placebo-controlled trial, obese women ages 45-64 years with unilateral radiographic knee OA were randomly assigned to receive 30 months of treatment with 100 mg doxycycline or placebo twice a day. Tibiofemoral JSN was measured manually in fluoroscopically standardized radiographic examinations performed at baseline, 16 months, and 30 months. Severity of joint pain was recorded at 6-month intervals.
RESULTS: Seventy-one percent of all randomized subjects completed the trial. Radiographs were obtained from 85% of all randomized subjects at 30 months. Adherence to the dosing regimen was 91.8% among subjects who completed the study per protocol.
After 16 months of treatment, the mean +/- SD loss of joint space width in the index knee in the doxycycline group was 40% less than that in the placebo group; after 30 months, it was 33% less.
CONCLUSION: Doxycycline slowed the rate of JSN in knees with established OA.
PMID: 15986343
-------------------- 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 |
posted
I agree that your Mom needs to pursue this. I can understand how cost can be an issue. At least go with her to her current doctor, bring some information on Lyme and her symptoms and insist on several months of antibiotics.
Hopefully she is healthy enough to handle Doxy for a few months. INSIST ON IT IF SHE IS ABLE TO HANDLE IT!!!! Doxy is cheap!!
That will at least get the ball rolling and some treatment in her system.
Keep a journal of her symptoms and see how she does on abx. If she feels worse on the abx that might be a good sign that it's killing the Lyme. More reason to pursue further treatment.
I'm in Southwestern Connecticut and had good luck with my PCP to give me 3+ months of antibiotics as I'm just starting my journey.
He's not an LLMD but he is very open to the issues of Lyme disease and is willing to work with me as far as how I want to be treated.
PM me if you want to know more.
Please don't let your Mom settle for a life of pain - she's too young for that and it's just not normal.
~megan
Posts: 257 | From Connecticut | Registered: Oct 2007
| IP: Logged |
bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Two more questions, please:
Do you think it would be a good idea to try three weeks of Doxycycline and/or Buhner's herbs to find out if she gets relief or a herxheimer reaction, or is it better not to treat unless a positive test, a primary care physician, or a lyme literate medical doctor confirms lyme?
In this case there is a history of two confirmed bites with bullseye and bad flu symptoms, and arthritic pain persisting after the short course of Doxy.
Knowing what you know now from your experience with testing, doctors and treatment, what would you do?
And the other question:
According to the muscle testing I did for my mother, and my kinesiologist's circuit testing for her, she has borrelia burgdorferi (lyme) and erhlichia.
Those who use muscle testing, how accurate do you think these tests have been for you, and how much has this system helped you in your recovery?
Thanks again!
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
| IP: Logged |
posted
I think using doxy would be more definitive as far as eliciting a herx.
I would take 400mg per day.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
You could if you feel the need to but, IMO if the ABX didn't really take it down initially, I'm thinking co-infections may be responsible and may need to be tackled before the Lyme can be. It might just be a waste of time & Doxy.
I'd get evaluated by a good LLMD who knows the co-infections.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 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)
![[Frown]](frown.gif)
![[group hug]](graemlins/grouphug.gif)
![[Wink]](wink.gif)
![[kiss]](graemlins/kissing.gif)
Printer-friendly view of this topic