New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 1/5/2010 10:12 PM (GMT -6)   
I have Lyme disease, and co-infections. I know I have Lyme disease and co-infection, because my body is telling me so. I have been battling this disease for four years. I have also been fighting Lyme denial all along. Unlike many with Lyme disease, I remember the ticks, I pulled an engorged tick from my body, I had a bulls eye rash along with two additional rashes that resembled curling iron burns. I had most the symptoms on the list of Lyme symptom. The only evidence I am lacking has been a CDC positive western blot from any lab. I showed 41+++ on all the tests, and some weak markers on other bands, but never a full five bands or more positive. As far as 99% of all PCP, and ID doctors are concerned I do not, and never had Lyme. I know I have Lyme. I can feel the crawling under my skin. I itch randomly through out my body. I have fatigue, nausea, muscle weakness, twitching, forgetfulness, brain fog, panic attacks, anxiety, chest pain, difficulty swallowing, and severe GI distress. Yet as far as the 99% of medical professional are concerned I don't have Lyme. For a long time in my illness I was in Lyme denial. How could a tiny tick cause me so much pain I thought. Prior to Lyme disease I had spent next to no time in a doctors office, except for a annual physical, or my knee surgery. I assumed we lived in a time of an advanced medical system that knew of such simple diseases as Lyme, and had the fool proof tests to find what ills you. When my initial Lyme test return negative, I was surprised but ready to move on and find what could be causing my suffering. My PCP had run numerous blood work, and procedures, and was stumped as to what this could be. He thought possible Crohn's disease, IBS, TMJ, and sinus infection. None of his possible diagnosis stuck however, and I was turned away and sent from one specialist to another. It is no wonder why I, along with others, many of whom never even remember being bit or exposed to ticks have Lyme denial. I still find myself questioning; is this Lyme, or something else. I know I have Lyme. I know I have co-infections. I know no matter how sick I become the 99% will never believe me. I know I have Lyme denial, and so does the other 99%

Post Edited (Cheezhead) : 1/6/2010 6:22:09 AM (GMT-7)


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 1/6/2010 2:34 AM (GMT -6)   
Cheezhead,

Everything you just posted is how I feel too sometimes. I know I have Lyme, but find myself always questioning the diagnosis because unlike you, I never saw a tick or had a rash. I was around people that had ticks engorged and I've been bit by fleas many times. I know I have Lyme because I've been checked for everything else under the sun and it all comes back negative, plus I have most of the symptoms on the list and herx when I take antibiotics. It's the inaccuracy of the test and the ignorance of these doctors that keeps me questioning everything. You would think that with all the knowledgeable scientists and doctors we have, that there would be a more accurate test.


**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 1/6/2010 1:33 PM (GMT -6)   
I agree CajunGrl, It's too bad they think the test are not flawed. What drives me nuts is, Lyme is supposed to be a clinical diagnosis. If your average doctor would just take the time to learn the basic symptoms of lyme, and perscribe a four week cource of ABX most cases would be cured relativly early. I remenber when I first started going to see my family doctor before I was even convinced I had Lyme. He had a poster up on his wall right next to the pain chart that said "antibiotics are not the answer". At the time I thought this was an unusual poster, but I figured they probably are asked quite often for ABX. This is what we are up against, regulated use of ABX and flawed testing.

Tala3
Regular Member


Date Joined Sep 2009
Total Posts : 233
   Posted 1/6/2010 9:54 PM (GMT -6)   
I know exactly how you feel - no known tick bite or rash, multiple negative Elisa tests, and "borderline" Igenex test, with clinical diagnosis here! Regular doctor's seem to think all we want is attention, and if they only knew we can't even talk about it to anyone that doesn't have this because it sounds stupid trying to explain it to anyone (no the tests aren't exactly positive; no I don't remember being bitten by a tick or having a rash; no my GP doesn't believe that I have Lyme's & won't acknowledge the Igenex lab results; and well, I know it sounds odd that this is a controversial disease, but...well...), so it's just easier to not talk about it, and if someone asks, we say we're "fine." And, we sure the heck aren't getting attention from the medical community!
 
All we really want is our health and our lives back! 

Post Edited (Tala3) : 1/6/2010 9:00:01 PM (GMT-7)


LupnerRN
Regular Member


Date Joined Sep 2008
Total Posts : 350
   Posted 1/7/2010 10:07 PM (GMT -6)   
yes, I hear your frustration and I work(ed) in the health care field. Unfortunately, western MDs just aren't being taught about Lyme in medical school. And if it's not in their reference books to look up, then they assume it doesn't exist. And then there's that little issue of MDs not liking to admit when they may not have the right answer.

cheezhead, you really need to find a LLMD.

I had BioSet (electral dermal testing) done. I never knew of any bites and never had any rashes. The BioSet showed positive Lyme, bart, babs and ehrlichia. It also shows which strains you have and what species of tick you where biten by. I apparently have been biten at least by two different tick types. I highly reccomend having this done. It's worth every penny! look up www.immunematrix.com for info.

blessings in recovery to us all !!
Lisa
11/07 symptoms start
7/4/08  IGenX LD positive,gluten sensitivity,low magn, low WBC's,+yeast/bacteria/tapeworm/roundworm, EBV,HHV,CMV,Parvo,
7/25/08 started on Biaxin
9/08 IGenX co-infections neg, but probable Bart, Bab, Erhl
11/08  Biaxin,Plaquenil,Cipro, Artemisinin,3 probiotics,Transfer Immune, Bcomplex,MultiVit,omega3,magnesium,
1/29/09  Added: Rifampin 600mg- Ehrl, Lomatium 15dropsBID-parvo, andrographis 15dropsBID (super yuck!)-LD, Alinia-cryptosporidium.   


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 1/7/2010 10:58 PM (GMT -6)   
LupnerRN, I have never heard of this BioSet testing -- but I plan to do a little research on this. I don't suppose this is a test that is covered by traditional health insurance policies? Or might it be?
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.


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 1/8/2010 12:10 AM (GMT -6)   
Lisa,

I've never heard of this test either. It sounds very interesting. Could you elaborate?
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum

New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, October 22, 2017 3:13 PM (GMT -6)
There are a total of 2,885,696 posts in 316,630 threads.
View Active Threads


Who's Online
This forum has 157739 registered members. Please welcome our newest member, fjzraa.
438 Guest(s), 16 Registered Member(s) are currently online.  Details
Sarahjane09, PeteZa, outofit, John_TX, imagardener2, Kent M., smile22, 07kr5, tarhoosier, Artist Mark, Michael_T, fjzraa, White Bird, Uniform Charlie, PA_grandma, FLBeachgal


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