New to lyme part II

New Topic Post Reply Printable Version
42 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

Eric P
Regular Member


Date Joined Jul 2010
Total Posts : 20
   Posted 8/10/2010 5:39 PM (GMT -6)   
I posted on this forum about a month ago.
I had been bitten by a tic and had the big rash.
Since then the migraine headaches have persisted and now I have a little trouble concentrating and spitting out what Im trying to say.
I have had blood test that have came back negative. MRI's of my head to try to determine if their were issues with the lining of my brain and they all came back fine.
They headaches are still here and they are planning on doing a spinal tap in two days.
A lot of Dr.'s in this area say you cant get lymes here in my area. My Dr. who is one of the top Neurologist in the state says you can.
My question is... has anyone had the lumbar puncture for lymes and if so what exactly are they looking for?
just curios if anyone has any experience with this.
Thanks for your help!
I know that Im a little vague but seems that everything is vague right now.
Eric P

springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2154
   Posted 8/10/2010 7:03 PM (GMT -6)   
Best of luck to you.  From what I understand though, just remember even spinal tap is not that accurate for lyme diagnosis. 
Lyme, erlichosis, bartonella, herpes, EBV. 4 years undiagnosed despite 10 drs.
Current meds: tetracycline, amanatadine, neurontin, xanax, valtrex
Prior meds: amoxicillin, probenecid, doxy. IV refused by insurance.
THERE ARE ROUGH DAYS, TOUGH DAYS BUT ALSO GOOD DAYS. MY BOYS GET ME THROUGH THE BAD AND I SO ENJOY THE GOOD DAYS WITH THEM!

betterhealth
Regular Member


Date Joined Mar 2010
Total Posts : 230
   Posted 8/10/2010 7:18 PM (GMT -6)   
Hi Eric,

If I were you, I would not waste time with the neuro and spinal tap and get yourself to a LLMD (Lyme Literate Medical Doctor). When I first got sick with Lyme, I spent a lot of time working with an ID doctor and Neurologist. I eventually consented to have the Lumbar Puncture not to diagnose Lyme but to rule out MS. I have a lot of neurological issues with neuropathy and motor control. If you know you were bitten and developed a rash, there is a very good chance that your symptoms are Lyme related.

When I had the lumbar puncture, they did test my spinal fluid for Lyme, however I had already been previously diagnosed with Lyme with positive results on my Western Blot. I would skip the spinal and get yourself to a LLMD. Good Luck!
Peace and Healing
Lyme Disease - Doxycyline, IV-Rocephin, Amoxicillin, Azithromycin, Ceftin.
 
 

Eric P
Regular Member


Date Joined Jul 2010
Total Posts : 20
   Posted 8/10/2010 7:54 PM (GMT -6)   
Thanks,
Any other opinions would be greatly appreciated!
Eric p

Simela
Veteran Member


Date Joined Aug 2010
Total Posts : 552
   Posted 8/10/2010 8:17 PM (GMT -6)   
Eric:

I agree with the others, you should not waste anymore time on tests.  I think if you get the rash, as I understand it, is proof enough you have Lyme--I may be wrong, but I remember reading an article where the LLMD did not even test his patient, he took a look at the rash and said "That's enough proof"

Don't waste anymore time, I got worse, by trying to figure this out and trusting my old PCP.  As it turns out, my tests were +, he just did not know how to read them!  Get an LLMD, you will save $$ in the long run.  If you get worse, you will spend more for treatement and the treatement may not be as successful.  The sooner you start treatement, the better.  Insurance does not cover long term antibiotics treatement, so you will not save that much AND you will actually risk spending more, if you get worse in the mean time.

My first treatement (given by PCP #1) was 3 weeks--not enough!  I've relapsed in less than a year.  A pcp may not give you enough medicine, and you may feel better at the end, but that doesn't mean all the spirochets have been distroyed.  If some will be still inside you, you may relapse.

Today, my new PCP put me on abx for 4 wks, until I can find an LLMD.  They are all on vacation, it seems. 
Of course, the above is just my oppinion, based on my research with this desease, as I have struggled for answers for a couple of years--which is what brought me here.

Good luck!

Eric P
Regular Member


Date Joined Jul 2010
Total Posts : 20
   Posted 8/10/2010 8:42 PM (GMT -6)   
Has anyone had a lumber puncture determine that they had lymes?
Eric

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 8/10/2010 9:08 PM (GMT -6)   
Eric, When you say you got the 'big rash' do you mean you got a bull's eye rash? This is very important, because if you did get a bull's eye rash, then you have contracted Lyme.

Not everyone w/ Lyme got the rash. However, a bull's eye rash ALWAYS diagnoses LYme. Nothing else causes a bull's eye rash. ALL Drs are supposed to know this!

If you got some other type of 'big rash', and you are ill, then you need to be tested/ treated for Rocky Mt Spotte Fever ASAP!
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.

GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 8/10/2010 10:05 PM (GMT -6)   
Waste of time and $$. Solution--get a LLMD, have him/her give you Igenex test, get treated by LLMD. If you have the bulls eye rash, you have Lyme disease, best evidence there is--simple as that. Neurologists, PCP's, ID doctors, and all the rest of them know next to nothing about Lyme disease. Why waste time when a LLMD or LLND can start treating you pronto. The sooner you get treated by a qualified LLMD, the better your chances are of beating this disease.

Gary

Eric P
Regular Member


Date Joined Jul 2010
Total Posts : 20
   Posted 8/10/2010 11:23 PM (GMT -6)   
Rash...lighter in the middle darker toward the outside,spot in the middle where the tic was that I found.
about 2.5 inches in diameter.
Was it a perfect bullseye...No.
Family physician took one look at it and said "bad news.. that is a sing on lyme"
21 days of doxy. Mederol Dose pak...finished.
Symptoms have not let up. I had a few good days in the middle of the steroid pak but didn't last.
Test up till now have been negative including RMSV.
Neurologist is planning on doing a lumbar tap thursday morning.
That is where I am at.
Thanks everyone for your help...Keep it coming!
Eric

betterhealth
Regular Member


Date Joined Mar 2010
Total Posts : 230
   Posted 8/10/2010 11:42 PM (GMT -6)   
Eric,

Most Lymies avoid steroids like the plague, I don't think you are getting the best advise and treatment. The lumbar puncture is a pretty radical method of determining that you have lyme and not necessary. I am not typical, but it took me a week to recover from my spinal. I only agreed to the spinal because I suspected menengitis or MS. I can't speak for the others, but I'm pretty sure that you won't find anyone here in support of steroids and a spinal tap. My LLMD told me that the hardest cases are those who have been previously treated with steroids.

By the way, I don't remember a tick bite and never developed a rash. I was fortunate that my Western Blot came back very positive six weeks following my initial symptoms. Where are you from? I'm sure that someone here can help you find an LLMD in your area.
Peace and Healing
Lyme Disease - Doxycyline, IV-Rocephin, Amoxicillin, Azithromycin, Ceftin.
 
 

Eric P
Regular Member


Date Joined Jul 2010
Total Posts : 20
   Posted 8/11/2010 12:26 AM (GMT -6)   
I am in Missouri.
Eric

GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 8/11/2010 5:35 AM (GMT -6)   
There's a LLMD is MO. If you want his name and contact info send me an email and I'll be glad to send you the information.

Steroid are the worst thing you can do if you have Lyme. I took them last year and spiraled downhill after that. I lost 75 pounds in six months and my immune system almost completely shut down on me. I was bedridden for six months and was never so sick in my life. No LLMD would prescribe you steroids except for rare circumstances.

Gary

Caldonia Sun
Regular Member


Date Joined Aug 2009
Total Posts : 310
   Posted 8/11/2010 6:49 AM (GMT -6)   
Have you actually been treated yet? It sounds like you are doing everything but and the longer you go the more entrenched the bacteria get. Get to an LLMD. Bullseye = lyme. Period.

Simela
Veteran Member


Date Joined Aug 2010
Total Posts : 552
   Posted 8/11/2010 7:47 AM (GMT -6)   
Eric:
Steroids is what I believe made me worse. As Gary said, steroids will shut down your immune system which no longer will fight the LD. I am back on abx bec of the steroids. Mild symtoms to no symptoms became unbearable after the shot (I only had one). Be careful!

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 8/11/2010 9:54 AM (GMT -6)   
Steroids push the tick-borne infections into the tissues & out of the blood stream. These tests only test the blood, so If you have taken steroids the antibodies that these tests rely on will not be found in your blood unless you get re-infected from what I have read.

I live in the area of the Ar. & Mo. state line and although I have not seen him ( can't make that long of a trip on a regular basis), the LLMD that GWB spoke of has a great reputation.

You REALLY need to be seen by a qualified LLMD. Don't wait for this to go into 'Late Stage LD' before you finally get the appropriate treatment!
There are a fairly large handful of us here that live with a the Late Stage infection, and I don't believe that even one of us is happy with the way things went.

It's also a LOT harder to rid the body of a late stage infection.
Even the mightiest oak tree was once a little nut who held it's ground!!!
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav

fluffylizard
New Member


Date Joined Aug 2010
Total Posts : 10
   Posted 8/11/2010 11:13 AM (GMT -6)   
Everyone is right. Trust me, you do not want to be going in to doctor after doctor looking and feeling like death warmed over because people who think they are medically qualified to recognize and treat every disease out there say that you don't have Lyme. What you described sounds to me like a perfect example of a bullseye rash. A lot of us never had that, and it is a HUGE help for diagnosing if you do have it. Please PLEASE get yourself to a qualified Lyme expert. Your body will thank you.
PS Trav, whereabouts on the border do you live? I used to go to school in Searcy (which is where I was bitten), and would drive from my home in northern IL to college using I-55 and Rt 67.
Infected: 4/08
Diagnosed: 10/08
Cured: Ummmm...

Simela
Veteran Member


Date Joined Aug 2010
Total Posts : 552
   Posted 8/11/2010 11:21 AM (GMT -6)   
That is my impression, too. You had the typical bullseye rash. I never got it, but the presence of it, means you have Lyme. The longer you wait, the longer you will need treatemen, making it more expensive at the end... The rash is enough proof!

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 8/11/2010 12:21 PM (GMT -6)   
"Fluffy" - (giggle!!)
I have lived in Marion County for 15 years now.
Even the mightiest oak tree was once a little nut who held it's ground!!!
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav

Eric P
Regular Member


Date Joined Jul 2010
Total Posts : 20
   Posted 8/11/2010 3:16 PM (GMT -6)   
Great help everyone!
My biggest symptom right now is an explosive headache every morning. In 5 weeks I have probably gone 5 days without. Did any of you have these headaches? Even though I have had MRI of my head my mind still wonders if I have something other than lymes. My wife assures me that it would be to great of a coincidence that I found a tick on myself, had a bullseye rash and then the headaches show up to be something else.
Eric

springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2154
   Posted 8/11/2010 4:42 PM (GMT -6)   
I drove myself crazy trying to figure out my headaches - everything from dental work to menopause to chewing gum to food allergy. if it is lyme, or its coinfections, you won't get rid of it til you get treatment BY AN LLMD. I wasted 4 years undiagnosed and then a year with an infectious disease dr. This thing is tough enough to beat, get to an LLMD now instead of many headaches later.
Lyme, erlichosis, bartonella, herpes, EBV. 4 years undiagnosed despite 10 drs.
Current meds: tetracycline, amanatadine, neurontin, xanax, valtrex
Prior meds: amoxicillin, probenecid, doxy. IV refused by insurance.
THERE ARE ROUGH DAYS, TOUGH DAYS BUT ALSO GOOD DAYS. MY BOYS GET ME THROUGH THE BAD AND I SO ENJOY THE GOOD DAYS WITH THEM!

Eric P
Regular Member


Date Joined Jul 2010
Total Posts : 20
   Posted 8/11/2010 4:43 PM (GMT -6)   
Anyone have experience with the headaches?
Not your normal headaches...what I imagine a migraine would be like.
Eric

Eric P
Regular Member


Date Joined Jul 2010
Total Posts : 20
   Posted 8/11/2010 5:46 PM (GMT -6)   
ATTN Gary.
I sent you an email. I would love some info you might have for me.
Thanks
Eric

Simela
Veteran Member


Date Joined Aug 2010
Total Posts : 552
   Posted 8/11/2010 6:10 PM (GMT -6)   
Eric:
I've had my share of headaches... Specially when I bent to pick something from the floor or to do laundry. I agree with what the other have said, get an LLMD. It will cost you more later. My PCP gave me 1 mo of abx because I could not see an LLMD right away. There is no easy way to get to the other end of the tunnel. My previous PCP said I don't have lyme, that my tests came + because I have had it. My new PCP correctly interpreted the tests being +. I've posted a link today about how you can read your own tests. I was misinformed for 1 year! I know take matter in my own hands--it is my life! Some PCPs are clueless! Have your wife do some reasearch and she will understand. Don't wait too long! Someone I know is in a wheelchair from lyme and co-infections, lost his $70,000 job and is now on dissability. He's gotten so bad that he can't answer my emails, he's having a family member type them in. I was in denial when I first came here, but through research, I realized it is not a joke, this thing is serious, and it will dissable you if you let it! Just my oppinion, take it or leave it!

Simela
Veteran Member


Date Joined Aug 2010
Total Posts : 552
   Posted 8/11/2010 6:12 PM (GMT -6)   
http://www.observer.com/node/44687

Have your wife read this article. This is a very serious writer, you can look him up. He's wrote a lot.

Eric P
Regular Member


Date Joined Jul 2010
Total Posts : 20
   Posted 8/11/2010 8:17 PM (GMT -6)   
Again has anyone here had a Spinal tap to determine if they had lymes.
Thanks
Eric
New Topic Post Reply Printable Version
42 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Thursday, October 19, 2017 2:22 PM (GMT -6)
There are a total of 2,884,335 posts in 316,479 threads.
View Active Threads


Who's Online
This forum has 157602 registered members. Please welcome our newest member, Heleneddworr.
435 Guest(s), 14 Registered Member(s) are currently online.  Details
alephnull, RedLabel, 07kr5, Dahlias, island time, Pirouette, getting by, Brook58, gabybee, Yellow Cat, InTheShop, AZ Guy, fiddlecanoe, garyDouglas


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer