reoccuring Lyme disease

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patsyjeanne
New Member


Date Joined Apr 2010
Total Posts : 6
   Posted 4/20/2010 9:17 AM (GMT -6)   
turn I had LD two summers ago and then last summer.  The first yr I was exhausted and the doc thought it was the flu...I suggested that I might have LD and they treated me and a had a fast turnround. I have a question about reoccuring LD, can we get this again and again.
I saw where some of you have had LD more than once. Do you think you get it easier now since you have had it.

GWB
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Date Joined Jul 2005
Total Posts : 570
   Posted 4/20/2010 9:57 AM (GMT -6)   
How did you and your doctor decide you had lyme disease the first time? Did he treat you based on your suggestion that you might have Lyme disease or did you have a Western Blot test from Igenex?

Did you see a Lyme Literate Medical Doctor (LLMD) for testing and treatment? Were you treated with antibiotics, if so, for how long and what kind?

Sounds to me you were under treated in the first place.

Gary

patsyjeanne
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Date Joined Apr 2010
Total Posts : 6
   Posted 4/20/2010 10:30 AM (GMT -6)   
I went to the ED first and they did route blood work, nothing was out of range. Sent me home, said it was  the flu. Went to my doc two days later with the blood work and again. We think the flu.. then I went again two days later, by this time I was barely about to drive myself there. I told her I thought it was LD and she did a blood test and gave me an imjection and a 10 day anitbodic. I do not remember the antibodic, but within hours I felt better. 
The blood test was not postitive for LD.. I have not had another. Does LD produce antibodies that show up in the blood.
This was my endocriologist, I am diabetic. my blood sugars were up the 500's and I had to go on insulin for several months.
I also have tinnitus now but I think the blood sugars did that.
I don't think they did a Western Blot test, just the blood test. I can call and get the results. I usually get them  but forgot that time.
Last summer I told the doc I thought I had LD again and she just treated me, no tests were done.  But since then I have had Vit B12 issues and have felt the same tiredness and acheness.
So who knows what I had...
thank Patsy
 

stutterbug
Regular Member


Date Joined Jul 2007
Total Posts : 478
   Posted 4/20/2010 11:57 AM (GMT -6)   
You probably never got rid of the lyme disease.

GWB
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Date Joined Jul 2005
Total Posts : 570
   Posted 4/20/2010 12:46 PM (GMT -6)   
You really can't assume you had lyme disease in the first place. Did you get bit by a tick and have a bulls eye rash afterwards? If so, it's pretty likely you do have lyme disease, but it would be good to have a Western Blot test to confirm it. Although, the test isn't 100 percent accurate since lyme disease is a clinical diagnosis, if you use Igenex, and if you have lyme disease, there's a pretty good chance the test will turn up some positive bands.

My suggestion is to see a LLMD and let them test you for lyme disease, and if you have lyme disease, let them treat you with the appropriate antibiotics. Ten days of antibiotics is nowhere near enough to treat lyme disease and possible co infections that you may very well have as well. Most people are treated at a very minimum for 8 months with antibiotics and some for several years depending on how long they've had the disease.

I strongly urge you to make an appt with an LLMD. As good as your doctor may be, she is not qualified to treat you for lyme disease, and it should never be assumed you have lyme disease without the appropriate tests. This is a serious disease and nothing to play around with. This disease has brought much harm and devastation to many of us who have suffered with it. The longer you put off getting a diagnosis and treatment, the harder this disease is to treat. It's robbed me of 15 years of my life and changed me into a person I never thought I'd become.

Please, see an qualified LLMD and get tested, and if necessary, treated asap. If you need names of LLMD's in your area you can email me for links to websites where you can get LLMD referrals. We are not allowed to post LLMD names on the forum. I'll be glad to give you links to websites where you can get referrals to LLMD's if you'd like.

Gary

DJF2005
Regular Member


Date Joined Dec 2009
Total Posts : 91
   Posted 4/20/2010 1:39 PM (GMT -6)   
I second everything Gary said...

It's been 3 years for me and functioning @ about 30-40% on good days.

Being home, unable to fully live your life is no fun. (especially as a man)

If I had known what I now know long ago, things would be different.

It is much more difficult to treat this illness long-term.

Be proactive now, live your life later.

Best

Derek

GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 4/20/2010 3:30 PM (GMT -6)   
Hey Derek,

Good to see you over here too! Guess we'll be bumping into each other in both forums now. Didn't know you were a member here too. turn

Gary

DJF2005
Regular Member


Date Joined Dec 2009
Total Posts : 91
   Posted 4/20/2010 5:02 PM (GMT -6)   
Hey Gary-

Yeah I have been a member here for as long as LN, but had to re-sign up due to complications.

HW is more laid back, it's nice. :)

Glad to see you over here too....

How is Jernigan's (sp?) stuff going? Improving?

Best

Derek

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 4/20/2010 5:28 PM (GMT -6)   
Lyme tests done within the first month or so after infection are unlikely to show Lyme disease because the body has not had sufficient time to develop enough antibodies for the test to detect. Also, the initial blood screening test for Lyme misses a lot of cases, so it is always good to get both the ELISA screening test and the WesternBlot test (both are blood tests). Also, most labs don't report all the bands on the WesternBlot, so it is best to go with a lab that knows more about Lyme such as IGeneX. Interpretation of Lyme tests should always be done by a Lyme-Literate practitioner (MD or Naturopath) because there are often cases that are negative by CDC standards, but if ANY bands are positive AND there are symptoms that are consistant with Lyme, then a clinical diagnosis is potentially warrented.

The best thing you can do to rule Lyme disease in or out is to consult a Lyme-Literate practitioner.
-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently weaning off TPN.
Meds:  Pulmicort, IV Doxycycline, Heparin (to flush PICC line), Claritin, Singulair, Domperidone, Colloidal Silver (topically & nasally), probiotics, Liver support herbs, Ailanthus, digestive enzymes, homeopathy.


Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4296
   Posted 4/20/2010 6:33 PM (GMT -6)   
Hi Patsyjeanne,
 
If you don't have any symptoms then I wouldn't worry about it..  If you do have symptoms of lyme, then I would get tested by IgeneX.
 
Denise
It's all about the Immune System mixed with a large dose of Positive Thinking and Detoxing Daily!
 
This song is about my years with chronic lyme since 1995 and being in remission for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA
 


patsyjeanne
New Member


Date Joined Apr 2010
Total Posts : 6
   Posted 4/20/2010 6:40 PM (GMT -6)   
Wow, this may explain why some day I go full steam and other days I drag.  I am reitred and raising goats. I have to take care of them and then I may crash on the couch.
 
I think I took Doxycycline, I did have a shot first. It is possible that the antibodies hadn't formed at this time.
 
I have changed doctors and I can see if she will order these tests. I would like to know.  I live alone and I have to be able to function...
Thanks for all the info... Super.
PAtsy

patsyjeanne
New Member


Date Joined Apr 2010
Total Posts : 6
   Posted 4/20/2010 6:49 PM (GMT -6)   
I forgot to add, I did get a tick bite but it was on the back of my head and I didn't think to get someone to look at it. I live in the country so ticks are everywhere. I have had 3 so far this year. I try to check all over when I have been out in the bushes.
 
Thanks again. Patsy

GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 4/20/2010 6:53 PM (GMT -6)   
Hate to sound like a broken record, but not all doctors will consider testing for lyme disease important because many of them don't think it even exists to the extent that it does. It's actually an epidemic. The doctor who will will best serve you for testing and treating you for lyme disease is a LLMD. Otherwise, you very well may get a false diagnosis or get under treated like you were in the past (assuming you have lyme disease).

I cannot stress enough the importance of seeing a LLMD if you want to be tested and treated for this disease. I believe that's the advice that everyone on this thread has given you. They should know--been there--done that!

Hoping for the best for you!

Gary

kolesj81
New Member


Date Joined Mar 2010
Total Posts : 5
   Posted 4/22/2010 6:25 PM (GMT -6)   
I would consider taking the Igenex test even if you don't have symptoms. I had abx for an unrelated (i thought) infection and later on when it came back it is much more difficult to treat. I've now been on abx for about 1 year with about 50% improvement. You may need a LLMD to order the Igenex test though. Whatever you do don't start another treatment until you have a dr that will treat until symptoms are gone for awhile.

patsyjeanne
New Member


Date Joined Apr 2010
Total Posts : 6
   Posted 4/22/2010 7:31 PM (GMT -6)   
I emailed the company and my doc can order the tests. Did insurance pay for the test?  i have to call mine and see if they will and then go from there.
Patsy

rosesinjanuary
Veteran Member


Date Joined Oct 2007
Total Posts : 748
   Posted 4/23/2010 5:51 PM (GMT -6)   
hI Patsy.
Lyme can go into remission, BUT I'd be very very hesitant to jump to that conclusion, I would instead go on with life and try to forget about it. If it comes back you will know it as well as you know to push in labor!! I hope and I'll pray that this is NOT LYME and you are healthy,
lisa

patsyjeanne
New Member


Date Joined Apr 2010
Total Posts : 6
   Posted 4/23/2010 7:05 PM (GMT -6)   
thanks Lisa, I would like to get the test but if I have to pay, I have to wait till I have enough money.
 
I get bite by tick so much, I live in the country and I am out in the bushes a lot. I raise goats and I am always doing something with them ..
Patsy

bablymers
Veteran Member


Date Joined Oct 2006
Total Posts : 1458
   Posted 4/24/2010 1:56 AM (GMT -6)   

Hi Patsy,

Welcome to the forum!  I am sorry you are suffering and suspecting lyme disease.  To answer your questions: 1) You can get lyme more than once---it can become dormant for years and then reappear when there is a trauma to the body,  And a person can be bitten by a vector and become reinfected.  I do not think there is a permanent immunity to the disease, so you can get it again and again.  

2) I'm not sure it is "easier" to get the second time around but I think that once a person's immune system is weakened by multiple infections, it may make them more susceptible to any kind of infection.  Plus, if the person is not really cured, but only in "remission", then I think the disease can rear it's head very quickly when conditions are right.  I think the best defense, in the long run, is to try and have a strong, healthy immune system that can fight the disease.

I hope you find the help you need and I hope you do not have lyme.

Best wishes to you,   bablymers mom

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