posted
A note to doctors: Listen to your patients!
A note to patients: Find a really good Lyme Specialist!
I am so frustrated. My doctor wasn't listening to me yesterday.
On top of that, I found out that I know more about Lyme Disease than she does!
This revelation is very depressing to me.
I thought my doc was so great because she had diagnosed me with Lyme disease from listening to my various ailments.
She even insisted on a second test when the first one was negative.
I was diagnosed in February (positive Western Blot).
It has taken me over eight years to get to this diagnosis, so it was great to finally have ``the answer''.
I truly felt I was in good hands.
She put me on doxy for a month then switched to biaxin/plaquenil combo for the last month and also had me taking a myriad of supplements, which help the body to fight Lyme.
She took me off of the meds yesterday, because they may be the cause of my tremors.
When she told me to stop the antibiotics, she said that these last few months should have done the trick, anyway. What?
So, after two months, I am now cured?
As we all know, this is not the case.
Now, I'm still not sure whether the tremors were caused by the actual medication or from the Lyme spirochetes dying off(herx).
But she didn't give me a chance to ask her that.
She seemed to be obsessed with the tremors themselves, and gave me the name of a neurologist in the city, a friend of hers (!) to check on them.
Now, I understand that she wants to cover all the bases, that maybe I'm developing a nerve disorder. You never know.
But personally, I would want to wait and see if it is indeed from the medication.
Fighting city traffic can be a daunting task for anyone.
I am a severely fatigued and ``brain-fogged'' person and the thought of driving myself into the city to see a neurologist needlessly, is enough to make me have a breakdown.
Doctors need to be more sensitive to the plight of severely fatigued people.
For me, it could possibly drain me of the last drop from my energy reserve; so the excursion into town had better be absolutely, positively necessary.
Reflecting on yesterday: I guess it's my own fault for not immediately finding a Lyme specialist when I was diagnosed.
I'm not excusing myself but it's really difficult to make rational decisions when you have Lyme brain fog and your short-term memory is failing you.
Many of you had great suggestions for me, then I plainly forgot them! Ugh.
So now I'm off of Biaxin/Plaquenil.
This means that I'm taking no medications whatsoever to kill the Lyme spirochetes!
Until I meet with a lyme specialist, I'm now in limbo and I'm scared!!!
Posts: 366 | From MA | Registered: Apr 2006
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Do you have a real llmd lined up?
Well look at it this way - you only wasted 2 months on her. I wasted awhile on a few ducks myself. When you get a llmd things will get better.
There are supplements that are like natural antibotics. Maybe you could try them till you get to the llmd. I know JimBoB takes alot of natural stuff.
I know what you mean about the fatigue. It is awful. I have memory problems and brainfog too sometimes.
I think fatigue makes the other two symptoms worse. How am I supposed to be able to think strait when I am always so tired.
(I misplace things ALOT, forget what I am doing in the middle of doing it,like washing dishes, Today I put the milk in the lazy susan and tried to put the ceral box in the frig)
[ 27. April 2006, 12:02 AM: Message edited by: Carol in PA ]
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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bettyg
Unregistered
posted
Hi! My husband has "essential tremors" with his arms/hands going 24/7 as well as his feet/legs but hands are the worst. It's different than Parkinson's.
When I was at my new LLMD/holistic MD last Thurs., she brought up this MOLD. Do you have mold and especially BLACK MOLD in your basement from flood water, etc.?
IT causes severe tremors! We've got to check our house more yet; I'm still exhausted from my Minn. trip. Good luck to you.
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My tremors have lessened by about 90% today, so it could be from being off of the biaxin and plaquenil.
I won't rule out mold, though. I have an allergy to it, and although I don't have a basement that floods, I do have a skylight that has a slight leak in it somewhere, causing a problem. Hmm.
Thanks for making me aware of it!
I am calling a lyme specialist this afternoon(after I get out of work) to set up an appointment.
Believe me, I wish I had called there two months ago!
And I actually just bought the book "Healing Lyme", so I will read up on the herbal advice in it.
Thanks again! Posts: 366 | From MA | Registered: Apr 2006
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
I changed llmds after a treatment failure. He was convinced I was better too. It is frustrating and it felt like he wasn't hearing me too.
The good news is that you have positive bloodwork and a diagnosis. Get and take or send your test results to the new llmd's office ahead of your visit.
Keep working in eating right, the low sugar diet is less stressful to your immune system. Warm soaks in a tub or sauna feel good and can trigger herxing.
Taking magnesium, with calcium and B-12 can make a difference during this time of no abx. Lots has been written here. Do a search for the details.
Try to limit your exposure to chemicals, this meas drinking the cleanest water you can get, without chlorine and flouride.
You are on the right track. You will hopfully have a better match in your next llmd.
posted
Allebridge I got tremors from zith and ceftin also. Some folks say its a herx, but I dont know. I am talking to the doc in a few days
-------------------- Nori Posts: 109 | From Virginia | Registered: Mar 2006
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Allebridge-
Don't beat yourself. It sounds like the treatment that you have had was not a bad course, other than the stoppage.
We go to one of the best LL doctors after working with pediatricians and others for about 6mos.
I would do it over differently, but I look at it that at least we whittled at the germ load and evidently that was our "path". Strong abx can knock you for a loop if you don't make some gentle headway, IMO.
Also, I want to encourage you that many dr.s do give patients planned breaks from abx as part of treatment course. I will pray that you can get a good appt organized for near future.
You have gotton good advice about natural-type things to do in meantime. Perhaps it will really be good to get these going and into routine before you re-enter the big herxes. I am only starting the basic natural stuff after a yr because the herxing brain fog made it hard for me to learn.
Sorry to hear your news. It is a shame your doctor didn't know more to help you.
We had a 4 month waiting list to get my daughter in to my LLMD so I found a Family Practice doctor who was willing to prescribe the meds in the meantime.
I took her western blot and a list of what meds were typically given to start a lyme disease patient out on and the doctor prescribed them. Maybe you can find someone to help you.
Or maybe your current doctor will give you another refill while you wait for your appointment. I agree that they shouldn't be able to just drop you cold.
Hang in there!
Posts: 460 | From Illinois | Registered: Aug 2005
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