body pain muscle pain, heart palpations and really painful chest rib cage area, sharp pain in near
heart, irregular heart beat, huge lumps behind my ears, bad acne(never had ance before), loss of
concentration, depersonalization, add got worse, crying a lot, very sensitive, paranoia, seizure
like episodes where i didnt loose conciousness completely.
forgetfulness, dropped things a lot, no motovation , and low body temp 97ish..all symptoms come and
go and move from 1-10 on scale..mostly all at 10 when first began treatment and before.
went to ER and then began applying for medicaid, but dont have money to see a LLMD for the moment
had to go to gp who didnt know much about lyme. but she put me on amoxicillin 4000mg a day and
doxy 600mgs a day orally for 1 month. started herxing bad during 3rd and 4th week of treatment.
now there saying that that is plenty treatment for lyme and the residual symptoms are psychosomatic.
went to ifectious disease specialist in morgantown and she said it was adequate treatment for lyme
and that the symptoms im still having (pains in back of head and arthritis, visual problems, etc,
even if there not as bad as before) are from emotional problems.
my questions is..could one month of hard core antibotics be ok for a relapse and/or reinfection of lyme and coinfection.
im convinced that this is neurolyme because of symptoms and for how long ive had it..
could i have had if for the entire 7 years and not known it and then it come to a head gradually over the last 2??
could a reinfection bring symptoms to a head??
could i be outta the clear for hardcore damage(esp. heart and brain) with the one month of
abx if i keep a good diet and supplements and herbs..and not need abx*basically because they
wont give me anymore*
does anyone know where i should go from here???
i hope i covered everything..im still waiting on medicaid for insurance..
also, does lyme effect people ability to work and go to school. i havent been able to do much of
either in the last to months. should i feel guilty-like i should push myself harder?
i need help/advice..
-------------------- If Your Going Through Hell, Keep Going... Posts: 99 | From Shepherdstown, WV | Registered: Sep 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Your story makes me hate the Infectious Disease Society even more. You can read all about them and their proposals right here on the front page.
Of course a month isn't long enough to treat neuro lyme, as you're finding out.
Please don't blame yourself; it would be very hard to keep fighting it and trying to do school and work.
Is there anyone in your family that can help you?
Another possibility is to find a local doctor who might be sympathetic. Perhaps he could do a phone consultation with an LLMD? Maybe you could ask to be treated in accordance with the ILADS Guidelines. Print them out and take them in with you. Explain your continuing symptoms. There are two standards of care. You are entitled to choose. You are not cured.
As to pushing yourself harder, guilt is a common feeling with lyme .. we all feel it. But don't let it take you over. It's not you and it's not your fault you're sick, any more than it would be if you had cancer or something! You begin to accept this guilt because of idiot doctors telling you it's all in your head. The problem is that it IS in your head -- the bacteria!!! And it needs treatment!!
Make sure you have copies of any positive lyme tests with you when you see any new doctors. Take a friend or advocate with you as that will help you with confidence. Join a lyme support group if you can find one. It helps to have someone knowledgeable with you.
Don't give up and stay with us!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Lonna -- the sad truth finally dawns on us that about everything we go through is related to Lyme/co-infections. I too have gone through years of confusion not knowing what was going on.
I encourage you to learn as much as you can here at the lymenet site -- knowledge gives you more power to know at least what you may be dealing with.
Then as Michelle said, you need to find LLMD/ILADS type allies to help.
Also, do you have any Lyme support groups in your area? You can find out at the support group heading to the left here.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
thank you so much for replying with all your advice and help..
the sad thing is, my mom has the money and ability to help me..she just wont. she thinks im anoerxic
and that this lyme disease thing is an excuse for me to lose control and want sympathy..*ugh sigh* my mom
is a lost cause and shes got everyone in my family believing that i shouldve been stronger and more
responsible and i woudntve gotten sick..ill never understand her. my dad is dead. so i really have
no family..as far as im concerned the best help/love ive recieved throughtout this whole
ordeal is thro lymenet...i love all of you for your support and understanding...
i am quickly seeing this isnt a poor mans/womans disease..it would be a whole lot easier with insurance, but i cant afford that right now, and medicaid*if it even goes thro*
i need an mri but they wont let me get it until they know medicaid will cover it.
do u believe from my symptoms and for as long as ive had it that is neurolyme??
-------------------- If Your Going Through Hell, Keep Going... Posts: 99 | From Shepherdstown, WV | Registered: Sep 2006
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Lonna
One month of ABX(antibotics) is not enough for treating lyme and or co-infections-
Dont push yourself -makes worse-
Read the NewBee link at the top of main page- look for
--Dr B's Treatment Guideline-- (in red letters) Easiest to understand-
Lonna- It is Very Important that you --Dont Freek Out-- you have to keep your act together so that you can make good dissisions --
From the symptoms you discribe - you have several Lyme and maybe Babs symptoms-so look into both --
Many things can cause disease to flair- stress- injury- time -reinfection-ect.
Some folks have ADD type things happen- Can scramble brains perty hard- Speech- sight- hearing- nerves- balance ect.
Spend your time finding a doctor-medicine- and help- School can wait until you get these things done first--
Take pictures of your skin rashes and Save to show doctors in future- and post here-
Write out a Clear -Complete Symptoms List of your symptoms- make copies
Skin doctors will give you Doxicycline for acne- so try that-
Hope this helps --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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Cobweb
Unregistered
posted
the sad thing is, my mom has the money and ability to help me..she just wont. she thinks im anoerxic
So she's willing to let you die of anorexia?
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
If your mother thinks you are anorexic, is she willing to pay for therapy? You might be able to find a therapist who can help you deal emotionally with all the stress.
And, maybe the therapist would even have a joint session with you and your mother to help your mother see that you are sick.
Anorexia is a disease. Even if that is what your mom thinks you have, you would think she would be wanting you to get treatment.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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