Lyme Disease Community
Is there life after lymes?
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This forum is for questions and support regarding What Causes Lyme Disease, Diagnosing Lyme Disease, and Joint Pain. Topics for discussion also include Living with Lyme Disease, Babesia, Bartonella, Rocky Mountain Spotted Fever, Anaplasmosis, other Tick Borne Diseases, Nervous System issues, Prevention, Risk Factors, Skin Disorders, Symptoms and Treatments

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Is there life after lymes?

I just came home from my GP and my labs came back positive for lymes disease so they ran the western blot and I tested positive in 2 out of 3 areas for the antibodies. However, I was non reactive in all the testing. They are sending me to a infectious disease doctor tomorrow and he should be able to tell by my tests if I really do have it or what is really going on.

I'm pretty scared I read out on the internet at a glance before I got my test results back and thought what a horrible thing to have to deal wtih.. don't seem to be a cure? I'm pretty frightened right now so anything positive if there is any thing positive to tell that might ease my mind would be greatly appericated. Thanks, Juli
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Avatar_f_tn
Greetings and welcome to MedHelp Lyme --

Sorry to hear that you are having problems, but you are in good company here.  

Part of Lyme and its common coinfections (the other diseases that the Lyme ticks often carry) is that it affects not just how we feel physically but also mentally and emotionally, so on top of being distressed about being diagnosed, you may be feeling particularly rattled due to the physical effects of the bacteria.  In other words, being shaken up by it is both normal and a symptom of the ailment.

We all get scared sometimes, but coming here to share information and status is very helpful to me and I think to others.  I don't think anyone would choose to have Lyme, but it can be managed, treated, and even recovered from, so don't lose hope.

Lyme is caused by a tricky bacterium that is not easy to eradicate, and we each have somewhat different symptoms which change over time, but life goes on in the meantime.  The first step to dealing with Lyme and getting well (or at least better) is a diagnosis, and medicine today is not very good at that sometimes.  

I would be sure to always get copies of ALL your test results to keep in your own file.  Different MDs read the test results differently, and if you don't have the tests with you, they can't see what has gone before.  The tests show what are called 'bands', and you need to know which bands are positive, and how positive each one is.  The tests aren't "yes" or "no", they have data that must be interpreted, and different MDs interpret them different ways.  I'd suggest you ask your current MD's office to send you a copy of the tests you mention above.  

There is a split in the medical community about how to treat Lyme.  One side says a few weeks of antibiotics is all that is needed, and any symptoms that remain after treatment are some sort of auto-immune reaction to the now-gone infection.  The other side says that Lyme is a tricky character that requires longer treatment because of its slow reproductive cycle compared to other bacteria and because it can hide in places in the body that make it difficult for antibiotics to reach.  You will have to see what the philosophy of the infectious disease MD is, and decide if the recommended treatment makes sense to you.  Many of us here have been on long term treatment and you will see that reflected in our comments and positions.

That divide in the medical community is what makes Lyme particularly touchy to deal with.  There are however treatments that can be quite successful, so don't give up hope.  Even those who have been infected for a long time can show improvement from treatment, based on what I read.  The first step is diagnosis:  were you tested for coinfections?  If not, ask the infectious disease MD about it.  The second step is treatment:  see what the ID doc recommends.

Let us know if we can help further.  It's a nice place to come for advice and discussion and support, tho no one here (to my knowledge) is medically trained, so you'll have to rely on your chosen MD for that.

Take heart!  Let us know how you do.

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640719_tn?1277143630
My Lyme Disease Antibodies were 23 KD (IGM) Band and 41 KD (IGM) Band were Reactive.

Also lymes Disease AB (IGM) WB was Negative

18 KB (IGG) Band
23 KD
28 KD
30 KD
39 KD
41 KD
45 KD
58 KD
58 KD
66 KD
93 KD
All above Non Reactive and Negative.

Lymes AB Screen range was 1.22 Labs Ref Range > or = 1.10 Positive

Not tested yet for coininfections.

Can you tell from my test above if I have active lymes going on right now? My GP thinks I'm okay because I've been on a lot of antibotic (antibiotic)'s in the past and that the test may show that I have been exposed at one time but it's gone now???  

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Avatar_f_tn
The website truthaboutlymedisease [dot] com has a list of what each band means -- I have it taped to the wall for easy reference (!) ....

Band 23 is specific to Lyme, meaning no other thing would give a positive except Lyme.  

Band 41 can be any spiral-shaped bacteria, of which Lyme is one, so it could or could not mean Lyme.

As I understand it, IgM shows a current or very recent infection, and IgG shows an older infection ... which seems to be the opposite of what your MD said.  Did the IgG and IgM get switched in the notes?  However, that said, I've read that different strains of Lyme produce odd results from what might be otherwise expected, and there are many strains of Lyme.

If you have a recent infection, treatment soon is a good thing.
If you have an older infection, treatment can still work.

I don't know about the AB screen range, but it looks positive -- ?

The tests are far from perfect, and always have to be read in conjunction with symptoms, so it will be interesting to see what the next MD says.

You hang in there:  you are doing all the right things as far as I understand.  Be kind to yourself, and keep hope.  Let us know how you do and what the MD says!
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1260255_tn?1288658164
Jackie gave a very good overview of things and it is especially important to know that there are two different camps in terms of Lyme Diesease. This can make it incredibly difficult to wade through all of the information in cyberspace.

If you research, it's important for you to try to recognize which camp information is coming from and to keep an open mind, ask questions and balance the information from the two sides into something that makes sense for you.

As far as your test results are concerned, how long have you had symptoms and what are they? More improtantly, do you still have them now?

The skinny on the bands that you did show reactive:

41 kD flagellin; this protein is not specific to the Borrelia genus but is useful in the test interpretation; cross-reaction with other spirochetes are common; a flagellin positive reaction may occur at early as well at late stages.

22-23 kD OspC: surface protein highly specific of Borrelia garinii and a marker for early infections.

If you had an old  infection and were on antibiotics early in the game, this could explain why you are only showing 2 reactive IgM bands and no IgG bands, which means that you no longer have active infection. I would tend to agree with your GP, especially when you consider that you were reactive on only 2 bands, one of which is non specific for Lyme. If you had chronic or late stage disease, in all likelihood you would be non reactive on both IgM and IgG bands.

To answer your main question "Is there life after Lyme?", most defintely yes. For some who are diagnosed late in the game, it may be a longer road, but early detection and proper treatment leave some people feeling that they just had a case of the flu. My son was dx'd anywhere form 8 to 20 months after being infected. While it was not simple, he went through three rounds of treatment over 10 months and is now fine. He also had Lyme when he was 8 which was not detected for 8 months, but one course or oral abx took care of things.

The most important thing is to listen to your body with your mind and decide if you need to pursue things further. Like Jackie said, take care of yourself and keep us posted.

Audrey




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640719_tn?1277143630

Thank you so much for your input!!! I will keep you posted I'm hoping this specialist I'm going to tomorrow is good.

I have thyroid issues also thyroid levels went hypo at the very time my symptoms began the 3rd week of Jan 2010. Thyroid hypo has same symptoms flu like muscle joint tenderness stiffness aches etc.. as lymes. I am getting better with each thyroid meds adjustments but it's slow and I feel my symptoms seem a little over the edge compared to others on the thyroid forum.

I see a lot of the antibiotic's they use to treat lymes are Ceftin, Amoxicillin and Doxy I'm allergic to the first two. I had pneumonia was on 3 different antibiotic's May 2009 Lava Qinn, Erythromycin, Z pack .. so wondering if they would have been beneficial if I did indeed have lymes at the time. Maybe this is a new infection?

I see short term use of antibiotic's to treat lymes and long term but read that short term treatment the lymes may return? What are you finding to be the best treatment overall on this forum from those who have been treated?  Thank you for helping me!!


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Avatar_m_tn
Hi juliva:

Wecome to the club.  I was diagnosed last week as well.

My advice to you...get a LLMD (Lyme Literate MD) who is experienced with treating AND CURING Lyme.  Most standard doctors don't know these, even the infectious disease guys.

Consider yourself luck that you tested positive.  In my first Labcorp Elisa test in March I was negative.  But I then went to an LLMD and had a more accurate Igenex western blot test done which was positive in 7 bands on the IgM.  23/25, 31, 34, 41, 83/93.  31 and 34 only turn positive if you've had it for a year.   IgG was negative.

Your doc should have some training from the ILADS dot org.   They are the oganization of doctors who treat chronic lyme.  You will want to download "Burrasacno's" treatment guide in teh "treatment section.   Very useful and explains the co-infections.  I suspect I have Babesiosis and Bartonella as well.

Get educated.  check out the trailer at underourskin *******.  A great film and deals with the conflicts of Lyme.

The only thing you should worry about is not getting proper treatment.  It sounds like you've caught it early, so your chances are good WITH PROPER TREATMENT.  I have doubts that that will happen with your current doctor.  You need an LLMD.  Unfortunatley, most do not take insurance.

I first had symptoms in February...a "drunk" feeling with cold hands, chills, sweats, etc.  That evolved into some weird eye symptoms.  I thought it was stress and went to a Chiropractor and then all hell broke loose.  I suspect he released some toxins and bacterial and I went nuts in March.   Was diagnosed with my ENT as having Labyrinthitis (I agree), but the root cause was Lyme.  I had a brain MR and brain spect and it is in my brain.  Not good.  I have no joint pain.

Best of luck!
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I have found a AWESOME LLDO who is a nathopath and takes my medical insurance. He is running additional testing through Lab Corp. He is well versed in lymes not only does he have lymes himself but his wife as well.

My appiontment was this morning it went well and I'm feeling better knowing it's going to be alright.. Starting abx tomorrow.
Keep in touch and good luck with your treatment as well!
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428506_tn?1296560999
I'm just dropping by on a mental break from work so I haven't read all of the (surely excellent) replies, but just to throw in my $0.02 there most certainly is life after, and yes even during, Lyme.  I say during because recovery can be long and slow, and for me there are up times in between the down.  So I sneak in life when I can, and try to gut it out when I can't.  

Fortunately, and likely due to our innate desire to survive, the memory has a way of remembering the good and blocking out the bad.  I fully understand that there are days when it is not possible to function well enough to enjoy life.  But there are chances along the road to wellness, and of course I do have high hopes for a more consistent good level of health.  Insert "It's a marathon, not a race" cliche.
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640719_tn?1277143630
Thanks everyone it is all good info... trying to take it all it. Went to LLDO and he and his wife both have lyme so he knows it first hand. He was a picture of health so it gave me hope! More testing being done so I'll know more in a few weeks. Starting abx tomorrow.
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