Long term Lyme

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georgegrl
New Member


Date Joined Jan 2009
Total Posts : 3
   Posted 1/14/2009 4:33 PM (GMT -7)   
I finally tested positive for Lyme after having been infected 20 years ago. I remember the bite and the bulls eye. I was diagnosed for years with Fibromyalgia while knowing in the back of my mind that I had Lyme, (all my test were neg so I was not treated). I finally found a Dr. and was tested positive on 5 of 6 markers. I am wondering if anyone knows anyone who has been successfully treated after such a long time with no treatment.

peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 1/14/2009 4:43 PM (GMT -7)   
Hi there and welcome to HW :-)

What lab did you test at?

And to answer your question, yes, many have had successful treatment after having lyme for a long time. Are they in remission? well remission is all relative.
Some peole get well with abx, some with abx and all natural healing and some got well just using all natural methods.

I was sick for a really long time and did the abx for 5 months. I was not getting well, but got much better when I did a more natural approach.
Do people ever get well from all the effects, well not sure. Only time and more research can answer this

The key is to research as much as possible and stay super healthy in order to have the best chance at recovery :--)

Jen
                                       Mod: Lyme forum  
 
Diagnosed with lupus and lyme disease in 2007. Treated the lyme for 5 months with abx. Now treating my lyme and lupus 100% naturally. I believe lyme caused the lupus.
 
The world breaks every one and afterward many are strong in the broken places


SickInCT
Regular Member


Date Joined Nov 2008
Total Posts : 157
   Posted 1/14/2009 4:47 PM (GMT -7)   
20 years may require IV antibiotics but aggressive long term orals can be tried. It really depends on the person and the strain. Give orals a shot, you don't have much to loose. If you are not responding in a month or two you may need to switch to IV. Good luck and hang in there!!

stutterbug
Regular Member


Date Joined Jul 2007
Total Posts : 478
   Posted 1/14/2009 4:59 PM (GMT -7)   
Hi. I was just diagnosed last year and was bit about 28 yars ago. I am trying oral first but am preparing myself for the IV treatment. I am getting new insurance.

georgegrl
New Member


Date Joined Jan 2009
Total Posts : 3
   Posted 1/14/2009 5:02 PM (GMT -7)   
The lab that did the test was IGeneX. I took 2 oral anibiotics for 2 months (then insurance wouldn't pay for the same anitbiotics for longer) now I am on one anibiiotic and plaquanil. I am seeing a homeopath so am on homeopathic meds to, including some that flush toxins, I am also seeing an acupuncturist. I am trying to still work but am frustrated at having to take so much time off for flares.

SickInCT
Regular Member


Date Joined Nov 2008
Total Posts : 157
   Posted 1/14/2009 8:38 PM (GMT -7)   
georgegrl said...
I finally tested positive for Lyme after having been infected 20 years ago.


Congratulations on the diagnosis!!! smilewinkgrin smilewinkgrin smilewinkgrin smilewinkgrin I am very sorry to hear that you have been sick for that long!!

How many times were you tested before it finally picked up a positive? What test was it that tested positive?

georgegrl
New Member


Date Joined Jan 2009
Total Posts : 3
   Posted 1/15/2009 12:48 PM (GMT -7)   
I have moved so many times since I was infected, every time I changed dr's I told them I had a bite with a bulls eye and they would test and of course it was neg. I must have been tested at least 10 times. I finally was dx by a test by IGeneX. Seemed great at first to finally have a dx but now with the increase in symptoms, not so much.

Tallison
Regular Member


Date Joined Jun 2007
Total Posts : 417
   Posted 1/15/2009 9:51 PM (GMT -7)   
Hi KeepHope and others.  I think we need to be recognizing herxes for what they are, but listening to our bodies at the same time.  If it feels too dangerous, talking to your doctor about lowering the dose or using something like Actos along with it might be helpful.  You might want to get tested for methylation pathway issues (which would hinder your body from ridding itself of toxins, and inform you to be on folate and other supps), heavy metal burdon's, etc.  Not sure if you already know this information.  For me, lyme (along with some other hiccups like I just mentioned) affected my endocrine system so badly that I almost died from adrenal crises.  So on the one hand I think one should push through some pain, but on another s/he must be careful.  Keep communicating with your doctor and close friends and family, and asking questions.  Do you have the gene that renders it difficult detox from Lyme?  Checking out your complement levels might tell you something as well (c3a and c4a).  My advice is, allow yourself to only 'give up' for a day or so (meaning, give yourself a break if you need it)... From researching, questioning, planning out pills, etc.  It will help you in the long to prevent giving up/total burnout.  The positive thing about Lyme and the Lyme community- There are a lot of options and a lot of new areas being studied.  I'm sending good e-vibes your way...

stutterbug
Regular Member


Date Joined Jul 2007
Total Posts : 478
   Posted 1/16/2009 10:33 AM (GMT -7)   
Hi.  I have had LD a very long time and reacted VERY VERY bad to abx last year. So, My new doc. is starting me out very slowly and building up. I am literally only on 100 mg of doxy right now and we are about to increase it. Everyone is different and the slow build up may be good for you too.

Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 1/16/2009 11:35 AM (GMT -7)   
Tallison: You mentioned complement levels. With Lyme are they usually high or low?? thanks D

Tallison
Regular Member


Date Joined Jun 2007
Total Posts : 417
   Posted 1/17/2009 8:50 PM (GMT -7)   

Hi Dowa,

High levels are not good.  You can look up c3a and c4a levels, there are a few RS videos on he web where he talks about them and what he thinks they mean (as far as lyme is concerned).  Also, if you do a search here on healingwell, you can see the prior threads on it, some very interesting discussions IMHO. 


sfere
New Member


Date Joined Jan 2009
Total Posts : 10
   Posted 1/21/2009 4:57 AM (GMT -7)   
got bit around 20 years ago as a kid fishing....had it floating around never paying anymind till i crashed hard one day and basically couldn't walk! It's taken roughly 4 years to get back to some form of normalcy. Doxy didn't do it...Biaxin didn't do it...only a combo of Bicillin and diflucan did. i've been weaned off the Bicillin now to a maintenance once a month and haven't felt better. Yeast is still a major issue and it gives me neurological issues because doxy basically just destroyed my gut. Thinking of trying the salt/vit c treatment cuz a large percentage of sufferers are also infected with parasites(I get this weird creepy crawly feeling in the middle of the night..wakes me up at 3am like clockwork!...also had acne like cysts take over my whole back...i'm thinking that i must be infected with this also). I had a co infection of mycoplasma pneumoniae which took a while to get rid of...so it's a long hard road back. I can function now....on good days 85% to 90% normal. on bad ones 75% LOL.
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