Tested Positive for one of the Lyme antibodies! Need direction.

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Donotfear
Regular Member


Date Joined Jun 2010
Total Posts : 46
   Posted 6/16/2010 9:03 PM (GMT -6)   
Help.   I got several tick bites during days of May 6,7,8 on a cattle drive in NW Arkansas Ozarks.  Started getting tired near end of May.
Symtpoms:
 *chronic fatigue, no energy, blurred vision, confusion, lack of sleep but sleepy all the time,  joint pain & stiff, muscle weakness, lethargic.
    Then out of the blue a red spot appears on my arm.  I was not bitten by a tick on that spot, but other places on my body.  A big red knot, like a mosquito bite came up.  Hard, hot, but not itchy.  Went on vacation, started feeling worse; then got a stomach virus.  Went to a doc who drew lots of blood.  Today, Jun 16, he calls me to tell me I have tested positive for one of the antibodies of Lyme, which we already suspected.  I've been on antibiotic Doxycicline since June 12. 
   The doc recommends I see a infectious disease doctor here in my city.  I'm in process of finding one through my OB doc (a referral).
  Please note: the doc I saw for this recommended a chest ex-ray.  He strongly advises it & has been very adamant that I get one immediately, since I didn't get one from him.  Have you heard of needing a chest ex-ray for this?  I admit my chest feels a little tight, I started coughing abit, sinuses are acting up but he feels I could possibly be susceptable to something else that can affect my lungs or chest or something. 
 
My direct questions are: 
1)Have you ever been advised for a chest x-ray after being diagnosed with Lyme?
2)He says I'll need to stay on antibiotic for 4 weeks.  Your experience?
 
Any suggestions or observations?  I would very much appreciate some feedback as I have just been diagnosed today and feel completely beat, physically.  Last 2 days were good, today terrible!

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/17/2010 12:05 AM (GMT -6)   
Donotfear,

A months worth of antibiotics is a good start until you can see a Lyme Literate Medical Doctor. Usually, pcp's only give 14 days worth. There are several members here that do see ID docs and have had a good treatment protocol with them. Just make sure you read and learn everything there is out there about Lyme so that you know what you are in for. Here is a great link to start you on your journey.

www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

The chest x-ray may just be for the coughing and tightness in your chest that you are experiencing.
Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis(Just diagnosed)
Prescription Meds: Savella, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, Magnesium, Calcium, Potassium, Folic Acid, Fish Oil, Vitamin C, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement

Co-Moderator Lyme Disease Forum


spaztick
Veteran Member


Date Joined Oct 2006
Total Posts : 851
   Posted 6/17/2010 9:22 AM (GMT -6)   
A chest X-ray was never done in relation to my diagnosis of both Lyme and Babesiosis.

However, I did have a chest X-ray done prior to my Lyme/Babs dx's as part of extensive testing due to my having chronic high-end low-grade fevers.

In my case, the Lyme disease was untreated for more than a decade, while you have described a recent illness, so your chances of recovery are much greater than mine.

I agree with what the others have said. Do your absolute best to eradicate this infection ASAP.
*Oral Abx Combo Tx since Jan/08*
Lyme disease - clinical dx ’08; Babesiosis (Positive IgM/IgG) '08;
GERD '05; Essential Tremor ’02; Fibromyalgia ’00; Osteoarthritis; Depression; IBS; Interstitial Cystitis


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 6/17/2010 1:28 PM (GMT -6)   
I live in the area that you mentioned, and have only found 1 doc who even admits that chronic Lyme exists. There are no LLMD's closer than 500 miles (That's 1 way!!) to me.

You should really get to an LLMD in order to get the proper treatment so that this doesn't turn into a chronic infection.

Most knowledgable docs want a person to stay on abx for 6 - 8 weeks for a recent infection.

Do yourself a HUGE favor & read, read, read!!! You will need to educate yourself about tick-born infections. A really good place to start is to read the thread at the top of the forum "New to Lyme? Start here". It's full of some very important info that we have put together.

I wish you the best...
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


Donotfear
Regular Member


Date Joined Jun 2010
Total Posts : 46
   Posted 6/17/2010 2:26 PM (GMT -6)   
I appreciate the feedback from everyone. After today, I can tell I will be on my own as far as finding a doctor who knows anything about this disease. I've had -0- luck except for getting the chest x-ray, which I did today. They sent results to my OB doc. I won't give up on this.

spaztick
Veteran Member


Date Joined Oct 2006
Total Posts : 851
   Posted 6/17/2010 2:45 PM (GMT -6)   
Hi Donotfear,

You mentioned you have been on doxy since June 12th. Have you noticed any increase in symptoms since you started the antibiotic?

(PS - Traveler has given great advice.)
*Oral Abx Combo Tx since Jan/08*
Lyme disease - clinical dx ’08; Babesiosis (Positive IgM/IgG) '08;
GERD '05; Essential Tremor ’02; Fibromyalgia ’00; Osteoarthritis; Depression; IBS; Interstitial Cystitis


Donotfear
Regular Member


Date Joined Jun 2010
Total Posts : 46
   Posted 6/17/2010 7:58 PM (GMT -6)   
spaztick: 
Yes, I have just started experiencing increase in fatigue, sleepiness, weakness.  I felt really good on June 14 & 15.  Then BOOM, when I got back from Seattle, it hit me like a lead weight.  Now my sinuses are acting up, I feel a tightness in my chest.  I finally got some rest after only about 4 hours sleep the past 2 nights. 
 
I have also noticed some changes in my thought patterns.  I am a mental health  professional & very aware of changes within me.  I'm a bit confused as well as extremely agitated, angry, and irritable.  I'm thinking of starting back on Prozac for a while.  I just want to weep until I cannot stop.  
 
Do you have any more suggestions?  I still don't have an infectious disease doc lined up...we're waiting on my lab results to come back from Seattle, then my OB doc is sending them to the only infectious disease doc here in town.  I'm praying for a miracle...

Donotfear
Regular Member


Date Joined Jun 2010
Total Posts : 46
   Posted 6/21/2010 6:18 PM (GMT -6)   
I have an appointment with a LLMD on July 6th. They want to retest me thru Igenex so that means I have to cease my Doxy in order for the test to be accurate. The office assured me the most accurate test was Igenex & I must be retested. So I'll be off Doxy for 16 days......I do see the logic in getting the new test but am apprehensive about being off. At least they will see me; and it's only 3 hrs away. The Physicians Assistant will be treating me. I'll do what it takes to get the right treatment.
Donotfear says -
"It's better to face your fear & fail than never face your fear at all."

spaztick
Veteran Member


Date Joined Oct 2006
Total Posts : 851
   Posted 6/22/2010 12:42 AM (GMT -6)   
Hi Donotfear,

I'm sorry for being quiet but I have not been feeling well at all this month. I started a new antibiotic (new for me) last Saturday, and the Herxheimer reaction has been quite strong.

I had asked you about feeling worse since starting antibiotics because it may indicate a Herxheimer reaction, which is also diagnostic.

That's unfortunate that you have to stop antibiotic therapy but 16 days is not too long. I would like to hear from others if stopping antibiotics is a good idea in your case as you were recently infected.

I was also going to ask you about the title of your post: "Tested positive for one of the Lyme antibodies." Which one and what test? Igenex is the most accurate lab to the best of my knowledge, but there are also a couple of other ones that folks have used that are good (I don't recall the names).

I'm happy that you have found an LLMD who you will see shortly.

Take good care, and keep us posted.

Cara
*Oral Abx Combo Tx since Jan/08*
Lyme disease - clinical dx ’08; Babesiosis (Positive IgM/IgG) '08;
GERD '05; Essential Tremor ’02; Fibromyalgia ’00; Osteoarthritis; Depression; IBS; Interstitial Cystitis


Donotfear
Regular Member


Date Joined Jun 2010
Total Posts : 46
   Posted 6/22/2010 7:07 AM (GMT -6)   
spaztick said...
Hi Donotfear,

I'm sorry for being quiet but I have not been feeling well at all this month. I started a new antibiotic (new for me) last Saturday, and the Herxheimer reaction has been quite strong.

I had asked you about feeling worse since starting antibiotics because it may indicate a Herxheimer reaction, which is also diagnostic.

That's unfortunate that you have to stop antibiotic therapy but 16 days is not too long. I would like to hear from others if stopping antibiotics is a good idea in your case as you were recently infected.

I was also going to ask you about the title of your post: "Tested positive for one of the Lyme antibodies." Which one and what test? Igenex is the most accurate lab to the best of my knowledge, but there are also a couple of other ones that folks have used that are good (I don't recall the names).

I'm happy that you have found an LLMD who you will see shortly.

Take good care, and keep us posted.

Cara

Cara,
Sorry you are going thru a herx phase.....don't give up.  I'm quite apprehensive about stopping the Doxy, but the LLMD requested it in order to get a more accurate test.  When I go the the appt on July 6th, they are going to draw blood & send to Igenex for the standard Western Blot.  They, too stated it was the only test they relied on for accuracy.  So I will feel better knowing I've had the best testing.  I'm going to ask about co-infection testing too.  I believe I have co-infections.  I'm suspecting that's why the GP up in Seattle insisted on the chest xray.
 
You ask about my Herx reaction.....I definitely had it.  For about 3-4 days I felt horrible....could not even work.  Then yesterday I felt much better.  It was definitely a reaction, which proves, to me, that I DO have the disease.   I did not take my Doxy last night & have ceased it.  My elbows are hurting a tiny bit, & my knee caps were hurting a teeny bit last night.  So far the pain I feel is minimal.  I'm going to attempt to exercise at Curves today.  I'm taking it slow.  I'll continue to post on how I do off Doxy for the 14 days.   You have my prayers and support.  I'm still in the shock phaze. 

Donotfear says -
"It's better to face your fear & fail than never face your fear at all."

spaztick
Veteran Member


Date Joined Oct 2006
Total Posts : 851
   Posted 6/22/2010 10:09 PM (GMT -6)   
Hi Donotfear,

It's good to hear you're on the right path now, and it sounds like you've been educating yourself about Lyme disease.

Only a person with Lyme disease can truly appreciate being relieved about having a Herxheimer reaction, because it makes it a little easier to believe we indeed have Lyme disease. I had a really hard time getting my head around having been infected with Lyme.

I've been off work since Feb/01, after being diagnosed with spinal osteoarthritis and Fibromyalgia in 2000. I was at first elated to have a diagnosis that actually made sense, but the feeling didn't last long once I learned what I was up against ~ medicine, controversy, and politics. Having a politicized disease throws a monkey wrench into the whole experience.

This forum has been very helpful to me over the past few years. You can come here to ask questions, vent your feelings in a supportive environment. There are a lot of folks on here who are are extremely knowledgeable.

I hope you were able to get to Curves, but it's a good idea to take it slow. Slow and steady wins the race!

Cheers,
Cara
*Oral Abx Combo Tx since Jan/08*
Lyme disease - clinical dx ’08; Babesiosis (Positive IgM/IgG) '08;
GERD '05; Essential Tremor ’02; Fibromyalgia ’00; Osteoarthritis; Depression; IBS; Interstitial Cystitis


Donotfear
Regular Member


Date Joined Jun 2010
Total Posts : 46
   Posted 6/23/2010 1:48 PM (GMT -6)   
spaztick:
about THE TEST I GOT...

I forgot to tell you before that the test I had was from Specialty Labs in CA. It showed 'Present' under the p41. I looked it up & i t stands for the flagella, or tail, of the little beast within. I will be glad to be retested thru Igenex though. I'm going to ask for co-infection tests because the red knot on my arm is not a bulls eye rask. It may be consistent with another bacteria invader.

I actually made it to Curves yesterday & felt fine while I was there, a bit tired, but I didn't go after it like crazy. Then last night my knee caps started feeling funny, sort of achy with some pain. I'm back at work today.....doing ok. Thanks for the feedback. I'll keep you posted .
Donotfear says -
"It's better to face your fear & fail than never face your fear at all."

spaztick
Veteran Member


Date Joined Oct 2006
Total Posts : 851
   Posted 6/23/2010 11:25 PM (GMT -6)   
Good to hear it, Donotfear. I hope the rest of your work turns out well.

Take good care.

~Cara
*Oral Abx Combo Tx since Jan/08*
Lyme disease - clinical dx ’08; Babesiosis (Positive IgM/IgG) '08;
GERD '05; Essential Tremor ’02; Fibromyalgia ’00; Osteoarthritis; Depression; IBS; Interstitial Cystitis

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