posted
Here I am on the boards again. I am flailing around like a fish out of water trying to make heads or tails of these symptoms and tests. I hope that there is someone out there (I know you guys aren't doctors!) who can give me some constructive thoughts, private or posted is OK with me.
When you see my signature, there you will see my current positive tests for lyme. I tested twice with the same results got treated 2 months last year but so far not this year. I also tested positive for mycroplasma pneumoniae this year...
When I was first diagnosed wih fibromyalgia in 1992 I zeroed in on it. Oh, it all made sense until the medical profession poo-pooed it. All my doubts were confirmed when I tested positive on a WB test!
Now a positive WB test says "Oh YES! it all makes sense!" Finally a blood test to confirm my illness. I was zeroed in on it! But now the MD's are poo-pooing that too!
As I look further into it, Singleton's book says that a positive WB can also mean other things like herpes I have had recurring outbreak of herpes-zoster on my upper butt cheek..TMI sorry!! I still don't understand the "band" thing. Why can't a positive WB test PROVE something?
I struggle with this tick thing. I don't ever remember getting a tick bite. I have been bitten by flies, mosquitoes and even a black widow spider. I remember most of my encounters with bites because my skin is hyper-sensative to insect bites! I still have scars on my ankles from getting bit by these evil biting flies 3 years ago at my aunts's pig roast back in Michigan!
I also have some cousins who are doctors, one is a D.O. and surprisingly he has been very critical and it has passed this attitude on to other members of my family which brings them doubt and I get a lack of support.
OK...so I have symptoms...lots of them. And I have had them at least since at least 1992 when I got really sick.
Extreme fatigue, anxiety attacks, achy all over
Severe "gouty attacks" on my hands, knees & ankles but my uric acid was normal
Severe headaches (but usually hormonal)
MAJOR heart skipping Dr.said it was mytral valve prolapse but never confirmed on the ECHO.
Most recently I have, what my doctor calls, a very agressive form of arthritis".
OK. You guys are all reading this and saying "SHE'S A LYMEY FOR SURE!!"
I am just not convinced. The medical profession has me brainwashed, I guess! Denial? I wish I had that documented tick bite. It would tie in to all of this and I would have more peace about going through what I have been told can be a brutal year or more of abx treatment.
Ok, I do admit, I am a camper, hiker (or was till I got sick) and love the great outdoors. Why am I sick but my husband isn't? Should he get tested too?
I have been "fragile" most of my life. Low physical energy as a kid but super hyper brain energy...ADHD for sure. I weigh that into my present condition and then I get confused. Maybe I'm just fragile?
I see a LLMD on the 25th. I'm sure she will answer a lot of my questions but while I wait I keep reading, researching and go back and forth. I would love to hear some input.
Thanks for reading and I am sorry if I keep buggin' about this...no pun intended Bebfire
-------------------- The Lord is my strength and my song
CDC/Igenex- Positive IGG 31+/- 34+/- 41++ IGM 23-25+++ 31+ 34+/- 39+/- 41+ Posts: 50 | From San Diego | Registered: Nov 2008
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
The medical profession has me brainwashed,Yep
Looks like your still infected you may other coinfections too.
Potential minor vectors for Borrelia species include: chiggers, mosquitoes, biting flies and fleas. Cases of LD being contracted from infected pets are well documented; likely due to the pet bringing infected ticks into the home. Borrelia can also be transmitted in utero from an infected mother to a child during pregnancy. Congenital transmission can cause miscarriages, severe neurological disabilities, or other major system dysfunctions to the baby. Other modes of transmission probably exist that we are not aware of. I am personally concerned that transmission may occur through blood transfusions without authorities knowing about it.
And this
Suffridge PJ, Smoller BR, Carrington PR. Department of Dermatology, University of Arkansas for Medical Sciences, Little Rock 72205, USA.
BACKGROUND: Although Ixodes ticks are considered the chief vector for Borrelia burgdorferi in the USA, B. burgdorferi has also been identified in mosquitoes, horse flies, and deer flies. We examined the possibility of these organisms being harbored in two species of spider in central Arkansas. METHODS: Ten wolf spiders (Lycosa gulosa) and two brown recluse spiders (Loxosceles reclusa) were collected in central Arkansas during early summer and fixed in formalin. Paraffin-embedded sections of the spiders were examined for spirochetes using the modified Steiner spirochete staining method and examined for B. burgdorferi using immunohistochemistry. RESULTS: All 12 spiders from both species were found to be negative for all spirochetes including B. burgdorferi. CONCLUSIONS: Spiders in our sample appeared not to harbor B. burgdorferi. Further studies utilizing larger sample sizes, more sensitive testing measures, or spiders from an area more endemic with B. burgdorferi may further prove or disprove that spiders are capable of harboring this organism.
They were looking for whole intact spirochetes in the spiders to bad they didnt do a PCR
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey hey...
Seems you've swallowed a big dose of doubt today. Sorry to hear it but do know... it is normal.
I can't diagnose you.. and won't try... but... I can say...
Ever see the movie Star Wars?
Or as my little 3 year old nephew use to call it... Star Hars? How cute... anyhow..
And YES I DO have a point. HA!
Assuming you've seen the movie...
Remember when ... near the end of the movie... they were attacking the big battle station that looked as big as a moon?
Remember the good guys, Luke Skywalker included, were flying those little one man fighter planes and trying to shoot into the secret passage that would destroy the big bad space ship, once and for all?
Remember what Obeewan said to Luke as he was fast approaching the target and trying to read the instrument panel.... while being shot at from several directions?
If not.. rent the movie and take in the message.
In your heart keep those words. Serve you well it will.
gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
Beb,
Alot of us have been in your shoes. Even my husband didnt want to believe it was lyme with a POSITIVE Western Blot. I had also been tested for lots of other things to rule out major diseases too.
I never saw a tick, EVER. But I was an avid golfer, an outdoor person, live in an endemic area, and have a cat. That + symptoms and a positive test = lyme to me. In addition to that, I am getting better on abx.
We all know that LYME is treated based on clinical symptoms and history of the patient.
Maybe this will reassure you a little. Get out the symptom chart and list everyone of your symptoms in detail and add ones that arent on there. If you need a symptom chart there is one at the top of this page in the Newbie section.
When I questioned my LLMD about whether I REALLY had lyme, she said that the fact that I was improving and responding to the medicine is how people are diagnosed and treated. (and I was responding)
This is also the case with other sicknesses. Doctors prescribe treatments based on symptoms not always TEST RESULTS.
Its true that alot of other diseases besides lyme are also treated in the same fashion. (clicnical diagnosis)
It really "BUGS" me when traditional doctors poo poo anyone have of having lyme. Its almost like they regard it as a "fantasy disease."
I question why these two organizations IDSA and ILAD wont stop fighting each other and start FIGHTING for better diagnoses and treatment of the disease. Posts: 1127 | From atlantic city, nj | Registered: May 2008
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massman
Unregistered
posted
Beb - isn't lyme a clinical diagnosis ?
How about you use Dr. B's list of symptoms and see how many you have.
Lyme seems to not like the blood so it is not the best place to look to confirm.
Search here for Dr B's list and check it out.
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bettyg
Unregistered
posted
beb,
i BELIEVED every one of the 40 - 50 drs. who saw me and guessed the latest diagnosis and symptoms i had! EVERY ONE!
NOT one every mentioned lyme or chronic lyme to me in 34.5 years!!!
symptoms list is in my newbie package; check table of contents to find where it's located ok!
DENIAL is biggest obstacle to overcome and go on from there! i was prepared to hear early on-set alzheimer's disease for me!
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posted
Thanks for all your thoughts on this matter. I am feeling a little better as a result of your posts and PM's. You are all so very incredible and so brave. thank you! Bebfire
-------------------- The Lord is my strength and my song
CDC/Igenex- Positive IGG 31+/- 34+/- 41++ IGM 23-25+++ 31+ 34+/- 39+/- 41+ Posts: 50 | From San Diego | Registered: Nov 2008
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I still have scars on my ankles from getting bit by these evil biting flies 3 years ago at my aunts's pig roast back in Michigan!![[Frown]](frown.gif)
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Denial? I wish I had that documented tick bite. It would tie in to all of this and I would have more peace about going through what I have been told can be a brutal year or more of abx treatment.
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