posted
I have been newly diagnosed, on meds about 4 weeks. I am seeing a well-recommended lyme doc. I feel like I am going to dye. The quality of life is horrible. I can't do any that I used to do. Some days I am attached to a toilet for about half the day. My doc said it is the virus starting to dye off. I totally believe him but I cannot take living like this. I live alone with no family, my insurance will not provide ``custodial care'' to help me around the house.
How long can I expect to feel like a bag of wet cement with no energy at all?
I need to get back to work soon, is this going to last years?
Has any one taken amphetamines for energy? I have a RX for them J
Is IV treatment that much better/faster than oral antibiotics?
thanks
Posts: 13 | From Mesa AZ | Registered: Nov 2009
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ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
quote:Originally posted by lymeinmesa: ...My doc said it is the virus starting to dye off. I totally believe him ...
Hello lymeinmesa - Welcome to Lymenet. We're glad you found us, but sorry that you had to be an addition to the family, so to speak.
I can't answer all your questions for you, but if your doc actually called your Lyme infection a virus, then you're in big trouble! Are you sure he or she said this? Please note that Lyme is a bacterial infection, although there are many co-infections that go along with it that aren't bacterial.
Yes, the treatment for these diseases is long and very hard. Please call your doc and ask if it's alright to back off the dosages a bit to ease you into treatment, rather than slamming you all at once. Since you live alone and with no assistance, you might need to find your starting dose level that will let you function, while killing the infection; in any case, treatment will not be easy or short. Sorry to be the bearer of bad news... Be sure you're taking a good probiotic to replace the good bacteria that's being killed in your gut; this is a MUST. Also, ask your doctor for something to help when the yeast becomes a problem (always does), like Nystatin or Diflucan.
Some patients respond better to IV and others don't; it's a trial and error experiment. What antibiotic did your doctor prescribe and at what doses?
If your doctor isn't an LLMD and not up on current treatments, please print off a copy of Dr. B's treatment plan and take it to him or her. This might help you both get adjusted somewhat to the routine. If your doctor doesn't respond positively, you might want to go to the Seeking A Doctor section of this site and find a bonafide LLMD.
If you have questions that are specific to a topic, you can run a search on this site and pull up all sorts of helpful info.
Welcome to the Family. You're not alone anymore. Sorry it had to be this way....
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I would worry more about the probiotics to protect
the bowels and a good yeast med to prevent yeasts,
than the energy meds you described. It will be a
long hard road so you can get things you need when
you can. I think electrolyte replacement drinks
would do a lot of good. IV meds can be dangerous
if not added properly. I know a man who almost
died with 106 temp with a Infect. Disease Doc on
IV meds for 3 mths. I think with all antibiotics
you have to know the signs of what your body can
take and when its in trouble and need to back off
for a regroup. His 106 temp. cured him, but it
would have been of no use if it had killed him. Prayers
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
I'm private messaging you.
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
I just found these replies, I got the private but one but did not know these were here.
Thanks for all the info. I most likely called it a virus. We have backed off on the meds.
I am seeing a LLMD
I am taking 500 mg Azithromycin and some supplements. I think the supplements are what is killing me.
I saw the doc this week to get blood results and it turns out we need more tests.He changed his mind on being able to use some test my family Dr ran. So i am waiting again... the LLMD told me he is not even sure i have lyme !!!!!!!!!!! this is driving me nuts. The LLMD is very smart about all this just kind of unorganized. I may be changing docs. I am stressed enough with out his unorganization.
I read Dr B's paper on Lyme. I asked my LLMD about some things on there such as yeast, sugar, taking amphetamines for energy. Only got a answer on the yeast and that was another test that my insurance wont cover. I have been treated for yeast before i still have Nystatin and Diflucan. i wont take it with out the Dr's ok.
I wanted to be back to work by Feb 6th, looks like that is not going to happen.
ok time to nap..
once again thanks for all the help
Posts: 13 | From Mesa AZ | Registered: Nov 2009
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Hi lymeinmesa~ Many things can cause symptoms similar to lyme, so it is important to identify what you are ill with and then begin treatment. So, if your doctor is not sure that it is lyme, let him run additional tests to figure out what you are ill with.
First, rule out the obvious things like thyroid issues, anemias, and make sure your CBC, CMET and UA are all normal. Then branch out from there, and let your doctor test you for everything he can think of, including infectious pathogens.
In addition to lyme, consider HHV-6, EBV, Cpn and enterovirus. If you do a search using my member number and the words "viral testing" you should find some additional info.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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I have been treated for yeast before i still have Nystatin and Diflucan. i wont take it with out the Dr's ok.
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