posted
My dauhter was diagnosed Lyme few years ago, 2 weeks i.v. antibiotics was given. She's now 25 yrs old and now she's got very strage symptoms, some only in past two weeks. - She was dancing and drang juice and water a lot. Suddenly she got a cramp in leg and also in her tongue. It was very frightening and painful to straighten the tongue, she told me. After that she felt fatique and was like drunk, even though she was not. - Now the fatiqueness has increased in her legs and most frightening is now difficulty in swallowing: it feels like there's something extra in her lower part of throat and it increases if she gets excited or - like yesterday - she cryes. The throat was about to become all blocked while crying, so she had to cool down from her feelings so that she could breath. Also she has got non-diagnosted problems with her hartbeats, tachycardia at times, and also ftrage sensations on her skin in the other leg: like hot water, or now in her throat: the other side of the throat is cooler. Some numbness also in the throat. Also headaches on the other side of head, also her other ear felt suddenly warm. These warm-like and numb-like sensations are several. Also she developed kind of rheumatic syndrome in her hip/lower back. It was very difficult to get that diagnosis. - She has told to doctors about these strange symptoms, but here, in our country, even in Scandinavia, the doctors don't take these seriously. Or, they dont't know enough about it.
After one week she's got an apointment to neurologist, but I'm afraid if these symptoms won't expand and turn to more severe problems. In healt center the doctor just ask to 'wait and see' - such words won't help a lot when it is now, two weeks, continuously difficult even to breath!
So, please, tell, if you have had problems in throat; numbness; feelings on the skin; and have these symptoms gone or got more severe.
Thank you!
Posts: 6 | From australia | Registered: Nov 2005
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posted
I've had a week at a time on and off for four years when I felt like the right side of my throat was swollen or ?paralyzed and I had difficulty swallowing. I had to really chew my food and it would take me an hour to eat dinner. That has gone away after 6 months of mepron and zith for babesia. But the zith could also have been treating lyme or bartonella a little, so hard to tell.
Posts: 293 | From healdsburg, ca , sonoma | Registered: Feb 2005
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posted
Those symptoms are consistent with lyme. She could have been re-infected, or else had a relapse. This germ is known to be latent for varying lengths of time and then suddenly start producing symptoms again.
The ordinary doc is not going to be able to deal with this, at least that is what most people find. Maybe if a doc thought she had been re-infected, bitten by another tick, she might get more treatment. If not, the idea of latent germs that are persistent seems to be beyond their imaginations, and they are apt to decline treatment, at least antiobiotic treatment. Especially bad would be if they put her on steriods unopposed by antibiotics. That makes the infection go wild because it suppresses the immune system.
There is a support group listed on this website for australia, but it does not deal strictly with lyme. Don't know, maybe contact them. There have been australians on this board occasionally, but haven't seen any lately. You might do a search of the archives here, see what you can find.
What you may have to have is a doc that specializes in lyme and I have heard there are one or two down under. Sorry, everywhere is bad for getting help with this disease.
If she is going to a neurologist, she may be told to undergo a spinal tap. This is to rule out other things because lyme bacteria don't like spinal fluid and are very seldom found there, at least in detectable form. Doctors don't usually know this and will say a negative test on spinal fluid means no Lyme disease. Not true. So, unless there are other possibilities you think are likely in the way of diagnoses, might consider declining the spinal tap. This will not endear you to the neuro. They like to do their tests, even if not useful.
The main thing at this stage is to get her to someone knowledgeable about lyme and not wait patiently while you go thru a whole series of clueless specialists, losing time and watching her decline.
Since it is the weekend, you have some time to learn more about this before seeing any doctors. One good place to start is with this file, print it out and read it. A real gold mine.
I notice that in the symptom list in this document, swallowing trouble does not appear but it is a common problem with lymies.
[ 05. November 2005, 05:55 PM: Message edited by: lou ]
Posts: 8430 | From Not available | Registered: Oct 2000
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Go see a lyme doctor even if you have to travel.
I havent been diagnosed yet....but one of my first problems involved my mouth and throat...it felt like i could not swallow...it took me awhile to eat and i had to have no distractions while eating. My tongue also felt swollen...and numb.
My mouth is starting to get that feeling back to it the last few days...but honestly ever since i got sick ive had mouth problems...odd numb sensations.
When i took zithromax...my throat was completly numb as was my tongue...it felt like there was a coating on it....
Dont wait for the neurologist tests etc...they tried to blame my symptoms on a herniated disc in my neck....2 neurosurgeons said it is not my neck....so, also be careful of these incidental findings....go to a lyme dr to see if she was reinfected.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
Thank you for your kind information! I noticed that I had accidentally marked Australia in the profile, should be Finland, mistake, sorry. Anyone knows a support-group here? Anywhere nearby?
Last night I browsed these pages hours and it seems good advice, as told here, to print something to the doctor's appontment after one week. - It is very little indeed in official reports mentioned about throat and mouth problems, as well as funny skin sensations (numbness, hot-water-like -feelings suddenly on the skin or, oppoistely, cold feelings like in her throat on the other side). Those feelings, especially in throat, are very spooky feelings and can even prophibit natural reactions, like crying of saddness or fear in the situation (because it increases the blockage in the throat).
In the beginning of Lyme at first she didint't notice the bite. It was only 1,5 yrs after the supposed bite-time she got severe problems: hard pain on the other side of her face, pain in hand and something else. Luckily some doctor found out borreliosis. He got antibiotics and was told everytihing's ok from now on. - But isn't. Now everytihing's all something else but ok. So many odd and strage symptoms, which have started to make us almost desperate and have made her depressed and tired to symptoms nobody know's what they are.
For doctors it is easiest to say that all this is just depression. Well, depression wont't do all this, surely. And, depression is not even diagnosed for her, medically, but all these symptoms and continuous, increasing fatiqueness (weakness in limbs; heart start to beat enourmously in slight home works like washing dishes etc.) has started to make her depressed; it dosen't mean that depression comes first and symptoms then but the other way round. Doctor's ignorance about the disease makes them to make the easiest 'diagnose', it means any diagnose - so that can be sayed the case is cleared and closed!
My daughter is active on her nature, hard working and has positive attitude to life and living, likes sports and running etc. but all this is now blocking out the joy of life. It is sad to see what all this is doing to her, little by little and right now in a very short time.
Some meds was mentioned above. What are your experiences in late-Lyme: what antibiotics would work the best and for how long period these should be given, orally or intravenuously? And what about Lamictal - heared something about it too? Does it help in the symptoms?
Thank you again; seems that this is the only place where to find any help.
Posts: 6 | From australia | Registered: Nov 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
i was diagnosed with depression by one dr and anxiety by another...sometimes i wish i did have one of those and that was all i had. Dr use that diagnosis when they dont know what we have...it is an easy out for them. I still have the meds i was given i never took them and never will. I havent seen a lyme dr yet so i cant give you any antibiotics. I just woke up with very scary throat problems...cold sensation in throat feeling like something is in my throat...my mout feels filmy and dry even though i just had some water. Hang in there hopefully someone will be able to assist you with dr in your area or close by. Have you searched online for support groups?
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
And, thanks for the link to burrascaos report. I am printing it right now, to my daughter to be given to the doctor.
Posts: 6 | From australia | Registered: Nov 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I tried sending you a private message but looks like you have that turned off. here is a link i found for finland...hope it helps...i got it from the canadian lyme website. http://www.geocities.com/gallisto1/suomenlyme
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
I'm so sorry your daughter is having such a bad time. Swallowing and throat problems happen fairly often for me, amongst other things. blech!
There are usually more people around here during the week (as opposed to on the weekend) so hang on and I'm sure more help will stop by. Ok?
As for the Lamactil, I'm not sure. It might help some symptoms but probalby not the underlying problem. (please note: I have no medical training at all, as if that wasn't obvious. ) I have taken Nuerontin(Gabapentin) for nerve pain and sensations and sometimes it works and others times not.
Hugs to you both and tell her she not alone with this stuff.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
^ up ^
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
Hi, thanks to you all for your comments. I didn't get any privat message, as someone asked me if I did. - We have tried to contact one doctor, who should know about Lyme, but I'm not quite sure if he understood right the symptoms. But, were not loosing the hope, yet. Maybe he'll undestand. Hope.
Posts: 6 | From australia | Registered: Nov 2005
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Hi bangbang, If you see this could you please private message me? (Click on the symbol with the envelope and little people on the top of my post.)
I have some information that can help you get some help for your daughter.
I look forward to hearing from you.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
I have throat problems. Two different things first I have a weird feeling sometimes in the back of my throat. And sometimes it's more like a sore throat. My doctor thinks this is a bartonella like organism. See: http://www.ilads.org/files/burrascano_0905.pdf I tested negative to bartonella, but I do have a cat and had wondered about this possiblity before
The second problem I have is that my neck muscles get really tight and I feel like I'm choking. We did an ultrasound of my neck to rule out any gland problems, and also checked h. pyriti to rule out a stomach problem (as apparently you can get referred pain) as it is neither of those we believe it is babesia microti which can cause tight neck muscles. I did test positive and have done various abx treatment for this with mepron, zithro, and hydroxychlorquine. I now test negative but still have this symptom so I'm taking artemisnin to see if that helps..
Have you checked for co-infections? It sounds similiar to my weird throat feelings.
Posts: 207 | From san francisco, ca | Registered: Mar 2005
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