posted
Hello, I am very frustrated with my LLMD. I really hate to complain about him, as I know that our doctors that treat Lyme take a huge risk in doing so.
My daughter and I both have Lyme and Babesia.
We have both been sick since we were infected in 2007. She is now 11 years old.
I was seeing an LLMD in TX who has since been forced to retire, and she was seeing a great LLMD who has stopped treating children.
She had a one year remission, and then her symptoms returned. We found a new LLMD, who was highly recommended by some folks on this board.
This LLMD refuses to treat my daughter with anything but one medication at a time, although she has both tested positive for and has many symptoms of both Babesia and Lyme.
I feel like our last trip to see him was a waste.
He prescribed my daughter mino. He said if that didn't work after a month, she should try malarone. If she has yet to show improvement after another month, she is not better, then switch to ketek.
She has severe headaches, dizziness, constant stomach pain, fatigue, calf pain, shortness of breath, fevers, chills, sweats, floaters, electrical sensations in her arms and legs, aching in her hands and feet and chest pain.
Shouldn't she be taking more than 1 medication? He didn't recommend any supplements, either.
I called his office to ask. His nurse called me back after I missed her call twice.
She said that my LLMD said that he felt that, at this time, monotherapy was "adequate" for my daughter.
She also informed me that I was going to be billed $15 because she had to leave 2 messages in addition to our conversation.
I have made her an appointment with Dr. J in CT, but we are on a 6+ month waiting list.
I am very worried that she is going to continue her downward spiral as we wait for our visit with Dr. J, but I'm afraid to add any meds to her regiment without a doctor's approval.
Does anyone have any advice for me? I would deeply appreciate any thoughts or input
[ 01-15-2011, 02:55 PM: Message edited by: Lymetoo ]
Posts: 151 | From SW US | Registered: Feb 2009
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Dump this doc. And don't feel guilty. Monotherapy is inadequate, and you are wasting time and money. What is he thinking?
Do you have a sympathetic local doc or nurse practitioner who could understand the Burrascano treatment guidelines and prescribe enough to keep her going for 6 months?
At least keep her on the Mino while you wait for the Dr. J appt. And keep that appt!
1) Since you're able to travel, find another LLMD that can see her earlier. The one you're seeing now sounds like a bit of a dolt.
2) Start an alternative regimen (herbal, rife, salt/c, etc.) until you're able to see Dr. J. Lots of members other than myself have good information about alternative treatments.
If it were me, I would choose option #1. I don't know how old your daughter is, but I'm almost nineteen and for the past two years as I've been getting more and more ill, my parents have not taken me seriously and insisted that I was overexerting myself, or I was having growing pains, etc. Now that I've waited so long to start treatment, it's going to be a lot harder for me to get better.
When it comes to you and your daughter's health, I would not wait six months to find a better doc.
Posts: 340 | From san francisco, ca | Registered: Nov 2010
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
I'm with 5vforest. Keep her in treatment while you wait for Dr. J.
And 5v - You are smarter than your parents. Thank God. And I'm sorry.
I was on mepron/biaxin/omnicef/plaquenil/nystatin and i was a wreck.
I went to only omnicef and i've improved markedly.
i am now adding byron white herbs into the mix so we'll see.
Point is - monotherapy isn't all bad, but i don't know if i'd stick with a doctor who wouldn't at least give it a shot.
Posts: 339 | From Outer Space | Registered: Aug 2009
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
Be very careful when considering Ketek for treatment. Ketek is under review in Canada due to high incidence of liver damage and death due to liver failure.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I am surprised that he would consider Ketek which is dangerous due to liver problems. I don't think it has any affect on babesia.
I am taking mepron which is in malarone. Zithro is given with mepron to prevent resistance. I don't know much about malarone but it might be more effective with another drug.
I agree that you should try another LLMD now while waiting to see Dr. J.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
I agree. Find a new LLMD. Mono therapy is a waste of time unless you and your daughter are one of those people who can barely tolerate ABX.
You need to find a ILADS doctor who follows Dr. B's guidelines. Don't waste any more time with this doctor.
Also agree, find another LLMD for your daughter until your appointment with Dr. J comes up. I'm sure you are on the cancellation list? Many times an opening comes up sooner than you would think.
It's not at all uncommon to have to try a few doctors to find the one that's really right for us.
Sounds like you are in or near Texas. CA has lots of good LLMD's.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
You didn't say how long she's been on this therapy--has she only just started it? Personally (I am not a doctor), I would go ahead and follow the protocol and see what happens. If there is gradual improvement or signs of change, keep going.
I don't think people here can say for sure that 'monotherapy doesn't work'. My LLMD uses this approach and it is definitely working for me (9 months of treatment).
I think there are risks involved in taking multiple drugs at the same time--risks which may seem tolerable to an adult making that choice, but a little scary if you're talking about a child.
So I think, move forward with what you've got and see what happens, then if you get an appointment with Dr. J, take her there and see what he says. Any results you get in the meantime (ie, better on x drug, no change on y drug) will provide him with more information.
Posts: 261 | From Nebraska | Registered: Jan 2010
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posted
Just wondering why this doc would possibly give an 11 yo KETEK??? What about Biaxin or Zithro? Try the Mino & hopefully you'll get in sooner with Dr J.
Something is wrong when a doc thinks about possibly using Ketek on a child.
Does Dr F in AZ treat children, anyone??
Posts: 269 | From VA | Registered: Jun 2005
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posted
My daughter has had LD and Babs since 2007. After 1 1/2 years with a different LLMD, she was in complete remission for over a year. However, she was taking at least 3 meds at a time.
As expected, I've gotten some PMs accusing me of "bashing" this doc. That was not my intention. I am simply questioning his choice of treatment for my daughter in particular.
I also stated that this doc came highly recommended by some other members of this board. So, obviously, his protocol does work for some folks.
Unfortunately, not everyone responds the same way to treatment. This is what makes LD so hard to treat.
I greatly appreciate everyone who took the time to give me their input.
As it stands, we will wait to see Dr. J, and perhaps continue to ask this current LLMD for something other than one med.
Many thanks to all!
Posts: 151 | From SW US | Registered: Feb 2009
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
Mono-therapy is NOT always inadequate.
I've been on mono-therapy for 3 years and went from dying to being functional. Some days I can almost forget I have LD.
My children were also treated with mono-therapy, although they both had to stop due to severe abdominal issues. They were then put on Sammento.
My LLMD put me on mono-therapy because my bacterial load was so high, he knew I could not possibly tolerate any more than that, and he was right. Since I started getting better on mono. then I kept at it (why do more when I can maintain on mono?)
So... just saying that mono- therapy can be very beneficial especially for those with very high bacterial load. That said, if you have kids and can afford it I'd certainly go with Dr. J for them.
-------------------- 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
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Sasha, sorry to hear about the negative PM's. I think you know what to do and you have been given some good advice on this post.
Follow you gut instincts and you will be fine. Ignore those who PMed you and continue to post here. We all learn from on another.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
If I recall the last similar post on this topic was erased, right? Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Yes, I did get some great advice. I learned alot that I was not aware of, mostly through PMs.
All I want is to make my daughter well. I'm trying to be as "politically correct" about it as possible, but her health is more important to me than anything in the world.
The treatment she receives NOW is going to affect the rest of her life. She has lost 4 years of her childhood already, and I want to know that I am making the right decisions in who I am entrusting with her care.
I obviously, through the messages I have gotten today, offended some people with my questions.
Again, sorry for that, but I'd really rather know the truth than to allow my daughter to continue suffering because I was afraid to ask.
I cannot thank you all enough for your replies. They have been extremely helpful and enlightening!
Posts: 151 | From SW US | Registered: Feb 2009
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
I didn't see any instances where you offended anyone. I hope a cancellation comes up and you can get her into Dr. J more quickly.
I do agree with the others about the Ketek.
While Dr. J is the "doc" for kids, have you gotten the list of other LLMD's who treat children?
Perhaps, you can see one of them until you can get into see Dr. J. That's typically what most people do.
Good luck. And don't let the crankies discourage you from posting. It's a difficult illness; I'm sure that you know.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
Dr. J would certainly be better for a child. However, the current Dr. you are seeing does not only prescribe monotherapy. I am currently prescribed 3 drugs at one time from him. I believe as other posters that he feels that is what your child can handle at this time. Best of luck you and your child.
Posts: 366 | From Louisville KY. | Registered: Nov 2003
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posted
Well, I finally got a call from my soon to be former LLMD's nurse (I had no idea he wasn't ILADS, just learned this)
As my daughter is having no luck with her tx, neither am I with mine.
So I asked, may I add something else to my current protocol, seeing that I have had LD, babesia and bartonella for four years and haven't gotten better yet?
Switch to levaquin, she said. I asked what else I would be taking besides levaquin.
Nothing! Just switch to levaquin, take nothing else. Call us in a month if you're not getting better.
I can't believe it. I have never heard something so ridiculous in my life. I have all 3 forms of LD and two co-infections. Levaquin is apparently supposed to fix all of this.
I am thanking goodness that I still have my former LLMD's cellphone number. I called him and he gave me several off the record, safe suggestions until I meet with my next, real LLMD.
The lone person who continues to harrass me about this doc: You don't need to worry about protecting his "great"(tongue in cheek) reputation anymore! I am DONE with him.
Posts: 151 | From SW US | Registered: Feb 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
It doesn't seem likely Levaquin by itself would treat anything but Bartonella. Good luck with your new LLMD SashaC.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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