Help! A close family member is convinced we are thowing our money & future away on IV antibiotics for our daughter. She doesn't believe my daughter has an active Bb infection and that we should take her to John Hopkins or Duke. We already took her to one University and the doctor said we had done all the tests he would recommend and then he started spouting Steere quotes - I couldn't get out fast enough.
I am trying to find reputable-source articles that will help convice this individual that our doctor knows what she is doing. Our daughter has had two positive Western Blots and our neurologist said her MRI demyelination pattern was consistent with Lyme (and he is not even an LLMD). If anyone has any links to articles, I would be most grateful!!
Slightly Less than Sane (at the moment)Suzy
Posted by christelleny (Member # 6719) on :
Hello Suzy,
I think we all dealt with a similar situation at some point during our illness and treatment.
There's nothing more frustrating than knowing that the people closest to don't believe you, mock you or think you're a gullible prey at the hands of a crooked LLMD who's taking advantage of the money you no longer have.
But at the end of the road, the doubters will doubt, so I've adopted the following attitude: unless I DO need someone's support (hubby, mom, dad), I don't bother explaining anything to anybody.
My treatment choices are my choices. I don't have to prove anything to anybody.
It doesn't get me their support, but it's a serious stress-reliever.
I'm sorry that I'm not answering your question. I do hope that you will be able to make them see the light. The sad truth is, as long as A. Steere and his peers are out there printing criminal literature about Lyme, there will always be people to believe them.
If I hadn't experience Lyme first hand, I might still be wondering which camp is right too...
Good luck to you and your daughter.
Christelle
Posted by PinchotGail (Member # 5066) on :
Suz-Q, Often opponents of long term treatment have said, "Controlled clinical trials have shown no benefit from prolonged antibiotic therapy for the treatment of lyme disease" and "Carefully designed and conducted studies of Lyme disease have failed to demonstrate benefit from prolonged therapy, and of particular importance with regard to the pending legislation, have demonstrated harm.
Here's one position paper titled, Evaluation Of Antibiotic Treatment In Patients With Persistent Symptoms Of Lyme Disease: An ILADS Position Paper by Phillips S, Bransfield R, Sherr V, Brand S, Smith H, Dickson K, and Stricker R dated April, 2003 founded that there are other peer reviewed medical research which demonstrates that extended treatment with months of the correct choice of antibiotic therapies can be remarkably beneficial for patients with late-stage Lyme disease ILADS
*Oksi J, Nikoskelainen J, Viljanen MK. Comparison of oral cefixime and intravenous ceftriaxone followed by oral amoxicillin in disseminated Lyme borreliosis. Eur J Clin Microbiol Infect Dis 1998;17:7159. ** Petrovic M, Vogelaers D, Van Renterghem L, Carton D, De Reuck J, Afschrift M. Lyme borreliosisa review of the late stages and treatment of four cases. Acta Clin Belg 1998;53:17883
Certainly, long-term antibiotic treatment is medically accepted and approved for other chronic infectious diseases such as tuberculosis and leprosy
* Small PM, Fujiwara PI. Management of tuberculosis in the United States. N Engl J Med 2001;345:189200. **Shaw IN, Natrajan MM, Rao GS, Jesudasan K, Christian M, Kavitha M.
Long-term follow up of multibacillary leprosy patients with high BI treated with WHO/MDT regimen for a fixed duration of two years. Int J Lepr Other Mycobact Dis 2000;68:4059.
In another abstract written by French authors:Tuerlinckx D, Bodart E. of the Service de Pediatrie, Universite Catholique de Louvain, Mont- Godinne; found in Med Liege 2001 Feb;56(2):93-6 states......"Lyme disease is one of the most common cause of acute peripheral facial palsy in children. Overall nervous system involvement is also the predominant manifestation of Lyme disease in children, chiefly as facial palsy and/or aseptic meningitis...............Although long term prognosis of facial palsy associated with Lyme disease in children appears excellent, current treatment recommendations advocate prolonged antibiotic therapy."
Dr. Kenneth B. Liegner writes in the Journal of Clinical Microbiology, Aug. 1993, p. 1961-1963, that "Chronic persisting infection not yielding to antibiotic treatment presents a dilemma for the patient, the physician, and for insurance companies that are contractually obliged to pay for medically necessary treatment .
* Sullivan, P. 1992. Health insures limit drugs for Lyme disease. Sunday Star Ledger. Newark, N. J., volume 79 March 22. Section E. p. 1.
The solution is not denial of the reality of patient illness or imposition of arbitrary restrictions on allowable durations of treatment but the design of more effective and less costly treatments that can keep the patients well.
Here's a search I did in Medscape......you'll have to pull up each one and check them out............. Medscape searches for chronic lyme
Gail Posted by flyers999 (Member # 1397) on :
Suzy,
You might want to show then this article in one of the lymenet's past newsletters entitled " Threat Of Disciplinary Action Creates Tense Atmosphere For Lyme Docs"
A very powerful article, it might make them realize why going to John Hopkins or Duke wouldn't be a good idea.
Posted by treepatrol (Member # 4117) on :
For me personally, I didn't start getting better until I started oral abx. I did 4.5 months of IV Rocephin.
IMO, and reading countless posts and articles, my IV just ran those little buggers into the cyst form and they were finally destroyed after about 31 or 32 months of orals.
I've now been in a remission for, my guess, a year now.
But, for me nothing worked as well as oral and combination of orals. And, the plus side to that was that the abx weren't so hard on my body as the IV was.
Time is the factor here...depending on how long or what stage the Borrelia is in will determine how long to be on abx.
I no longer see my LLMD, but, you can see his website by following the link below. Many posters and former posters come from all over the US to see him.
Good luck and God bless you daughter,
Posted by ccoastmom2003 (Member # 5128) on :
Hi,
I'm new to this group. I have a nineteen year old daughter with late stage Lyme. As others have said, we can probably all identify with the lack of support and understanding about this disease from many friends and family members!
Here's an article which I think is very informative. It's called "50 Questions About Lyme Disease" (or something like that).
I wouldn't bother trying to convince anybody. Most of my friends and family disappeared when they found out I had a serious illness. It is a hard thing to deal with, on top of everything else, but in the end you learn who is really there for you.
If they are interested and concerned, by all means keep them informed, but don't feel like you have to 'convince' them of anything. Make statements, don't beg for their approval of what you are doing. They don't have to live your life, you do.
When I found out I had Lyme most people I knew suggested I go to the big reputable university medical facility a few miles away too...those who had actually gone there for treatment of Lyme told me to run out of state to a real LLMD! And that's exactly what I did...I traveled a good distance to see more than one...AND NOW I HAVE BEEN SYMPTOM FREE SINCE MARCH OF 2003!!!! ***ALMOST 3 YEARS***
Matt
Posted by treepatrol (Member # 4117) on :
quote:Originally posted by matthewgoss: I wouldn't bother trying to convince anybody. Most of my friends and family disappeared when they found out I had a serious illness. It is a hard thing to deal with, on top of everything else, but in the end you learn who is really there for you.
If they are interested and concerned, by all means keep them informed, but don't feel like you have to 'convince' them of anything. Make statements, don't beg for their approval of what you are doing. They don't have to live your life, you do.
When I found out I had Lyme most people I knew suggested I go to the big reputable university medical facility a few miles away too...those who had actually gone there for treatment of Lyme told me to run out of state to a real LLMD! And that's exactly what I did...I traveled a good distance to see more than one...AND NOW I HAVE BEEN SYMPTOM FREE SINCE MARCH OF 2003!!!! ***ALMOST 3 YEARS***
Matt
Isnt it something when your friends and some family dissapear ?
They must be fearing for there own life?
I know I dont understand it.
I have really been disgusted with alot of friends they dont even call and its not long distance either. They were lifelong ones also.
Dissapointed to say the least.
Posted by SuZ-Q (Member # 5903) on :
Thanks so much to everyone for your support and for the great articles. I have been bombarding my relative with emails, but none have even been opened yet - how discouraging.
I may not have any luck changing this person's mind, but at least I know I tried. It is very difficult when it is a very close relative who has much influence in the family, epecially on impressionable teen who is tired of treatment and just wants to be normal again and forget all the hassle of meds, infusions, supplemments, logging symptoms and temperatures, etc. I have asked that she not be so vocal with her opinions to my kids, but she thinks it is her right and obligation to say what she thinks, even tho' it has been somewhat detrimental to treatment. Not really any way to limit contact, unless I get rid of all the phones in the house and move. I wish she could see things from our point of view that we have chosen this route of treatment and we need support, not dissent. When I requested she educate herself on Lyme, she refused - didn't see that there was any purpose or that it would do anything to make an impact. The impact of reduced stress in our family would be tremendous if there was more of an understanding.
Thanks for letting me vent and thanks to everyone for your help!!!
Suzy
Posted by matthewgoss (Member # 3167) on :
"Not really any way to limit contact, unless I get rid of all the phones in the house and move."
Wow...you need to grow a backbone. You can't limit contact even though you know this person is interfering with the treatment of your child?
I'd just tell this person that on doctor's advice she isn't welcome at your home anymore.
Toxic people like this create a lot of stress and other problems...and I'm not just talking about Lyme here...there are toxic people everywhere. You are not required to put up with them. You don't even have to talk to them or have any contact at all.
Or maybe you could just let her continue her behavior so that you can maintain your social standing within the family.
Matt
Posted by SuZ-Q (Member # 5903) on :
Well gee, Matt. Let's be frank. Sometimes there are complicated issues within families that can't be condensed as easily as you may seem to think.
I don't really want to stop contact with this person, she is an important part of our lives, but her attitude towards Lyme and its treatment is causing a lot of stress in our family. I would like to be able to limit some of the things she says to my kids and sometimes it makes me feel like I should limit contact with her, but it is a feeling that usually passes with my anger. I know she loves us and wants what is best for our family. She just disagrees strongly about what the best thing is when it comes to Lyme. This is why I want to help her reach an understanding of what we are doing and why.
