posted
hey everybody: let me first say that i suspect lyme/co-infections...i should say first as well that i'm 17, so pretty young
there's a ton of symptoms that i have, but i feels like i have a lot of neuro/mental symptoms such as feeling beyond out of it, bad memory problems, depersonilization/derealizition...it almost feels like a third person feeling if that makes sense. it's beyond terrifying and it's hard to get through the day feeling so off...all of my senses just feel beyond off, like a bad acid trip or something, i feel like how i react to things is severely off...if i look at things, it feels/sounds different. i could go on and on but there's a lot of neuro/mental symptoms
i mean i have plenty of symptoms such as weight loss, flush feelings, dizzyness, i feel sped up and plenty of vision problems...unlike some people, i don't have any joint/gi problems really
i've had positive celiac bloodwork, so i either have celiac or a gluten intolerance caused by something, but other than that, nothing really yet
but here's the real problem i have...i feel like i can't take feeling any worst, it's just SUCH a struggle and i feel SO off...i just feel like i literally can't handle a bad reaction or die-off here...i could have deadly fatique and be fine, i'd rather have that ANY day than these severe mental/neuro problems....i just feel like i can't feel any worst or something bad is going to happen, so i'm trying to be very cautious and that's why i'd love to have something like ART- because any pitfalls would be too much i think
if anybody can relate to this, what do you think are the best first things to do in my case if i did have lyme? if some mental/neuro things were better, i'd be beyond happy, i can deal with any physical symptoms...but these mental ones are just so bad and i feel like i just can't feel worst, it's torture and i could go on for hours about how bad they are, but i'm just wondering if there's some first steps for people in my case that would be a good choice...to take a burden off of that so i could be more stable, but i feel as though the only thing i can do is be slow and cautious to not have any reactions here and feel myself a little bit, so i can at least handle some things here
i should also say that i went to bioset once, and my liver/lymph came up as sluggish...so i'm having detox problems i assume...my body also came up under 8 for toxicity (i'm sure some people will know if they went) and it showed my thyroid as effected, things like that...luckily, i'm not dealing with metal issues like some people here i think...never had any fillings, and neither has my mom, so it looks like that won't be a problem...i'm sure this post seems beyond sloppy and confusing, so i'm sorry if it does, but it's just so much and so overwhelming to try to fit into one post
Posts: 7 | From Warren | Registered: Jan 2008
| IP: Logged |
ByronSBell 2007
Unregistered
posted
Where do you live?
First step. Find a LLMD
Second step. Test for lyme with Igenex and test for co-infections with Fry Labs.
Third step. Start agressive treatment after you know your test results.
So if you could tell us where you live, we can find a doctor for you
p.s. I got sick at 17 and am now 19, but I will be well by 20
IP: Logged |
posted
I started with the exact same symptoms flushing , light , touch, sound sensitivity, dizziness...... Did not start to get joint pains and present that way until after ABX. Please find a LLMD and get tested.
Posts: 115 | From warwick, new york | Registered: Mar 2008
| IP: Logged |
posted
i live in RI, but i'm moving to NH, and i hear there's a good LLMD in Portsmouth that's an ND...also heard there's somebody else
say i did have lyme and co-infections, with such severe mental/neuro symptoms, what do you think would be the best start/thing to do? to at least take a lift off of that because i feel like that literally can't get any worst, it's killing me and i just don't feel like myself in ANY way Posts: 7 | From Warren | Registered: Jan 2008
| IP: Logged |
posted
RPM999 Hi. I sense you also have panic attacks, like me. You have Neurological problems? Me too. I saw a neurologist and she put me on "Neurontin". The muscle tremors I had stopped and the pain I had in my legs lessened right away. At first I thought it was a miracle drug. But then I got much the same side effects as you. So much so that I was afraid to drive. I "ramp'd down" and got off it and I'm glad I did. Well I was just wondering because you didn't mention if you were on any Rx. Thought I would throw my 2 cents in. Hope you get the best of care. Good Luck Peedie
Posts: 641 | From So. CA | Registered: May 2008
| IP: Logged |
bettyg
Unregistered
posted
999. welcome; so glad you found us! do you have my newbie package?
sorry, i couldn't read your post; could you edit it to shorter paragraph for us neuro lymies? instructions are below ... BIG THANKS!
********************
WELCOME, would you like a FREE copy of my newbie package of 120 pages info galore sent by LYMENET'S PRIVATE MESSAGE system here; includes TREEPATROL'S LINK of his archive of over 1000 links of good lyme info?
I've been completely REORGANIZING it; NOT DONE YET; but up to page 60 since I have now created a TABLE OF CONTENTS WITHOUT PAGE NUMBERS since it changes DAILY! The part NOT organized yet is the last 30 pages of SSDI, ss disability insurance benefits tips/forms!
also, please go to TREEPATROL'S NEWBIE INFO IN MEDICAL; at top being features; mark it as a favorite! over 1000 links of good lyme info. He/I have some duplicates.
most of mine is very DETAILED info on certain things: SSDI/ss diability insurance benefits; FINANCIAL BURDENS; about IGENEX blood testing, symptoms lists for the basic types, NOIR/no infrared SUNGLASSES, etc. and how to use this board!
If you would like my newbie package, please send me a PRIVATE MESSAGE. PMs are the 2 people standing together icon to right of your name. Just ask me to send you lyme package, and I'll get it to you promptly. Thank you!
**********************
When you post or reply, please break up your solid, continuous block text
welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``THREE`` after each paragraph; we need that space for comprehension.
if you are NOT a wordy person, you can do 2 or 3 total ok. do this for your entire post.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy.
IP: Logged |
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Hey there 999,
neuro lyme and I got better immediately and initially with doxicycline and ammoxicillin
orally with a little metronidazol thrown in for the cystic form it will mutate into....
Then, after about a year or untill you plateau on the doxy and ammoxy you might try levaquin
and ceftriaxone or clyndamycin or vancomycin IV's or orals or IM's(intramuscular)...or even
pennicillinLA or whatever they call it...and followed by some Diflucan....
Someone once said that this disease and it's pain and herxing is just something that we have to go thru....
"to get thru this, we have to go thru that"
or something like the above quote.
Unfortunately until we get enough money for research and education, it's anyone's guess as
to how each individual should handle their particular strain or strains of Bb and co-infections....
also from the book of Dr B and ILADS...
"For Neurologic Symptoms He recomends Acetyl-L-Carnitine (which did'nt agree with me) but taken with SAM-e.
This combination can result in noticeable GAINS in short term memory; mood and cognition(thinking)."
"The Acetyl-Carnitine also is said to help heart and muscle function. Doses; Acetyl-L-
Carnitine-1500mg daily on empty stomach and SAM-e-400mgs daily with the acetyl-carnitine.
Available in most vitamin stores. Positive results may appear as early as 3 weeks; (use for approx 3 months).
also
Methylcobalamin(Methyl B12) "This is a prescription drug and made from
vitamin B12 that helps to heal damage to the nervous system. Must be injected into muscle, as
it will not be effective if used under the tongue or swallowed. Use25mg daily".
The above two suggestions are straight out of the guidelines of the ILADS foundation....so hope it helps.
I tried the B12 shots and I saw no significant results one way or the other...
Always the best advice given is to get your own LLMD and tailor your treatments to your own
bodily reactions and whatever is found or suspected as whichever bacillus or virus or fungus is plagueing you in particular.
We're all the same and different!
I personally found fishoils to help me more than the L-Carnitine....
Good luck... zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
| IP: Logged |
Many LLMD's use doxcycline as the first drug. Mine also started me on meds for babesia from the very beginning.
I would find an LLMD where you're moving and go see him ASAP, even if you have to make a trip over there before the move. You're young, and have a good chance of recovering with aggressive treatment.
I had bad neuro symptoms, too. They have, thankfully, cleared up.
I didn't have joint problems the first 30 years I had Lyme .... perhaps that's one of the reasons I wasn't properly diagnosed.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[Frown]](frown.gif)
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
![[Wink]](wink.gif)
otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy. 
Printer-friendly view of this topic