must be some "elusive" thing, such as lyme

That's just my opinion though. You have a LLMD in Springfield MO. If you havent posted in seekign a doctor yet, you could do that or email me

and I will give you his contact info

and you can see what kind of help he can give you for lyme.

I didn't believe I had LD until I had a sleep test and found out I was waking up 116+ times a night from pain.

Get a sleep test and have your thyroid tested. These are all things the Lyme will mess up.

When you take and antibiotic do you feel horrible a week to 10 days later? That is a herx and is a sure sign.

Linda
 

Warning -
Since your info sounds so much like Lyme, do not take steroids until you are evaluated by a LLMD.

Steroids suppress the immune system, which gives the Lyme bacteria a big advantage.
This results in your symptoms getting much worse. Also, it may complicate treatment of Lyme in the future.
If you are taking steroids now, you'll have to ask your dr how to taper off.

I agree with the other responses that you need to be evaluated by a LLMD. Dr C is in MO.

Read "What do you like about Dr C?" at http://flash.lymenet.org/ubb/Forum3/HTML/004140.html

I hope you're near Springfield. If not, then for safety you need to have someone drive you!!
It also helps to have someone without brain fog listening to what the dr says.

Don't know your age, but -
if you had a bull's eye or two when you were a child & you were not treated adequately, then you have Lyme disease.
Your immune system may have been keeping it under control until 1995 when your problems started.

In my case, I removed a tiny tick (after 4-6 hours attachment), had a bull's eye rash a few days later, but NO other symptoms for 5 to 10 yrs. Sounds vague about the time frame, but I don't know exactly when I had the tick bite.

In the last 10 yrs when you've had symptoms, have you had antibiotics (abx) for something like ear or sinus infection?
Did you notice any change in your symptoms, either better or worse?

If you did, this could have been the result of some of the Lyme bacteria being killed.
But if you did not take a strong enough dose for a long enough time, then some of the bacteria would have survived.

Make an appt today for an evaluation by Dr C.

Stay with us on LymeNet & give updates from time to time.
We'll be wondering how you're doing.
 

ANA
Sed rate (erythrocyte sedimentation rate)
Lyme western blot

Often, in Lyme the ANA and Sed Rate are normal but the Western Blot will have Lyme specific bands. I suggest you get a Western Blot and ask for a copy of the result. If any of these bands are positive (even one) that indicates exposure to Lyme-18, 23, 30-31, 34, 37, 39, 83, 93. The lab and doctor may interpret the result differently.

A bulls eye rash is diagnostic for Lyme.

Also, I suggest you make an appt with an LLMD ASAP.

janet
 

The Lyme tests are pretty lousy, but most importantly, the LABS are inadequate. You need to have your testing done by a lab that is set up to do testing for this.

Most folks here use Igenex Labs in California. Your dr most likely doesn't even know about that lab. Igenex tests for more bands and for more strains of lyme than the others.

You need a Western Blot, by the way. Do you know if you've had that? I would call your dr's office and ask them to fax [or mail] you a copy of the test results.

Then post that for us!

Matthew Goss's website http://www.anapsid.org/lyme/matthewgoss/index.html

------------------
oops!
Lymetutu

 

------------------
oops!
Lymetutu

 

Read about the labs to use for lyme testing.
MDL labs takes all insurance call and get your test kit.

http://mdlab.com/html/home.html

I also had your same exact problem.

Good luck,
Heather

P.S. After 5 weeks of antibiotics most of my pain went away.

P.P.S. 3rd month of antibiotics I got my libido back (too much info) and I can do lite execise.
 

The more I read, the more I am confussed
because the symtoms for Lupus and Lyme
are almost identical.. How can I go
about figuring out which one it is? Are
there any specific questions that will
lean someone towards one or the other?

The Lyme test I had was several years
ago when I lived in Seattle. I have
no idea where it was done. I think
is was "Pac Lab". Anyway it was a
western blot. I still have little faith
in it.

My current Doc suspected Lupus but said
its such a hard disease to diagnose since
my blood work including SED rate were all
normal. And I spent a fortune on blood
tests.. CBC, Metabolic Panel, T4, Thyroid
Hormone, ANA, C-Reactive Protein, Rheumatoid
Arthritis, etc. All came back "Within
normal range".

With Lyme is it common for the Brain Fog
to come and go throughout the day? Sometimes
I feel like such an airhead and sometimes I
am feeling prety sharp..

Does it make sense that exercise makes the
symtoms worse? The Dr. said exercise should
help no matter what ailment I have.

Anyone with LUPUS knowledge? I bet some
people have wondered if they had Lupus or
Lyme.

Good luck!
 

I am looking into LLMD. I live in St. Louis
and I see lot's of praise for Dr Crist in
Springfield but that is a 4 hour drive away.
Hoping for a closer Doc but I'm willing to
travel if I need to.

If it is Lyme, I wonder what to expect since
I would have had it for 10 years now. Anyone
here diagnosed after 10 or so years and
still recovered? Am I destined for
life-log antibiotic use? I read some
people have had IV antibiotics. When
are they used to treat lyme?

I also beleive CFS (which all the doctors
eventually hung on me) is just a term made
up to label people when the Dr. can't figure
out what is causing the fatigue.

PS: Any tips on how to eleaviate brain fog?
Cool showers seem to be my only vice right
now to help clear the fog.

Last August my PCP ran a slew of tests including ANA, Elisa+, negative Western Blot(Labcorp), CBC, Chem Profile. My ANA was borderline (still worries me on a daily basis), sed rate 3 (normal)All else normal.

My next visit was at the end of a ten day course of Augmentin for sinus infection. I was then tested for EBV and a repeat ANA.

EBV positive for active infection but resolving and ANA negative. I believe autoimmune? is triggered by a pathogen.

My Western Blot (recent from Igenex IGM equivocal and IGG positive) Head for a LLMD. If you treat for Lyme first, you're not risking as much as you would be by treating Lupus annd then find out it's Lyme. My $$, what's left, would bet on Lyme.
 

You made the following statement.

quote:

---

Originally posted by Linda LD:

When you take and antibiotic do you feel horrible a week to 10 days later? That is a herx and is a sure sign.

---

I am wondering can this happen with any antibiotic being taken for other reasons? I was taking an antibiotic for a "sinus infection." I should mention that I had a lot of facial numbness with this so called sinus infection. But the reality is, the numbness started before I got sick with the flu. I had a doctors appointment made for some strange things that were going on with me. I then got what appeared to be the flu. On April 7th the doctor treat me with antibiotis cause he said my flu symptoms had gone on beyond the normal lenght of time. I started taking the antibiotics on a Tuesday night. On Wednesday and Thursday the symptoms of the nasal congestion and facial numbness started to improve. I figured that indicated it was just a sinus infection (something I have never really had an issue with.) Then by Friday afternoon, the facial numbness had seemed to return with a vengence. I called the Doctor and went back last Tuesday. Could that original antibiotic
cause a Herx reaction in your opinion or anybody elses opinion??

My Lyme test was negative,it was basic blood test. I know I was bit by a tick last summer.
Jane
 

quote:

---

Originally posted by Neenny:
Could that original antibiotic
cause a Herx reaction in your opinion or anybody elses opinion??

My Lyme test was negative,it was basic blood test. I know I was bit by a tick last summer.
Jane

---

The Lyme tests that drs usually run are very inadequate. You need a Western Blot done by Igenex, in my opinion. I am not a dr!

Tom, I had Lyme for more than 40 yrs before being diagnosed and I'm doing great! I recently got another tick bite, so I'm back on meds, but I know I'll beat this!

Look at it this way, Lupus "treatment" uses a band-aid approach, attempting to alleviate symptoms. It usually involves taking steroids.

If you have Lyme, the steroids will make the Lyme go deeper and you will have a very difficult time recovering.

With Lyme treatment, you are attacking the CAUSE, the spirochetes. There's no harm in trying that approach first.

A four hour drive is nothing compared to the alternative. Trust me, there's not a better doc in MO for Lyme treatment. You're lucky to be this close.

------------------
oops!
Lymetutu

 

I made an apt to see Dr. Crist for
this Thurs!

**************************
More questions....
**************************

Does it make any sense that my symtoms
are just about dibilitating from 1 hour
AFTER I get out of bed until 4PM or so everyday and then they fade quite a bit
from 4PM to 9PM? My brain fog always
goes away (mostly) by about 4pm.
(although the fatigue is still there)

It's almost like Sunlight/UV
triggers the brain fog. At night I am
generally still tired, but my head is
clear and I can concentrate. Anyone
with brain fog notice this?

Also... Anyone have any ideas how to
cope with brain fog other than the cool
shower trick that I use? It's almost
like a slight shock to my nervous system
by way of cool water on my head clears
out the brain fog somewhat.. (reduces it
I should say)

Let me thank everyone for all the help.
Please keep reading this thread as I
will have more questions as we go and
I know other people are being helped as
they read this as well. I'm not so
religous but I must say God Bless everyone
who helps out by replying to these
messages.. I sure am greatful....

quote:

---

Originally posted by tom63376:

Wow! I am overwhelmed by the info..

The more I read, the more I am confussed
because the symtoms for Lupus and Lyme
are almost identical.. How can I go
about figuring out which one it is?

---

Tom, why not suggest to your doctor that he gives you a trial on antibiotics, in consultation with a Lyme-literate doctor (eg a member of ILADS (www.ilads.org)

If you have Lyme, a very characteristic reaction is a temporary worsening of symptoms early on, followed by an eventual improvement. the worsening is called the Herxheimer reaction and is believed to be due to the release of toxins by dying bacteria.

If this was a non-bacterial, auto-immune disorder (as lupus is considered to be), you would be unlikely to experience either that temporary worsening, or an improvement on antibiotics.

Be aware though that because you have been ill for so long, an improvement on antibiotics might not show immediately. You can find detailed information on Lyme treatment in Dr Burrascano's guidelines (published at www.ilads.org).

Best of luck,
Lisa

ps In case you should have a positive ANA in future, it's worth knowing that this can occur in Lyme too.

 

I have a lot of sickness from sun exposure, and warm sun also feels like a scalding on my skin. I have been diagnosed with cutaneous lupus, and had a skin biopsy that was positive for autoimmune activity.

The thing is, "lupus" is a label for autoimmune activity of a certain kind. Research has shown that Lyme can trigger autoimmune activity in certain people with certain genetic characteristics.

In other words, Lyme and "lupus" aren't mutually exclusive. The question is, will Lyme treatment also treat the autoimmune disorder? Many LLMD's say yes, but some MD's think that the autoimmune problems will persist even if the bacteria are wiped out. This is the center of the whole Lyme controversy.

My daughter's very high ANA came down steadily with antibiotics, and all her autoimmune labs are now normal. On the other hand, I am still having problems with the sun after 4 years on antibiotics.

The good news is that in terms of treatment, it really doesn't matter. Many docs are now treating "lupus" with antibiotics. Plaquenil is a drug that is used for both. So using this plus an antibiotic means both possibilities are covered. Steroids are bad for Lyme, but rheumatologists don't always use them for lupus right away, so there isn't usually a conflict between diagnoses.

Of course, since your ANA is negative, lupus is highly unlikely anyway, but I did want you to know that labels aren't always the important thing. Lyme and lupus can sometimes just be one and the same illness.