posted
I was wondering if anyone has successfully been treated for lyme after possibly contracting it decades ago - I had tick bites as a kid in NC (which definitely wasn't considered endemic for lyme at the time), then tested positive last fall (Western blot only, not Elsa).
So far all that has happened with treatment over the last 6 months is a gradual worsening of symptoms. Just wondering if it's really lyme or something else - seems a little crazy that it could be dormant for so long (am seeing LLMD who says childbirth often triggers it for women). Any insight / experiences would be greatly appreciated!
Posts: 2 | From Chapel Hill, NC | Registered: May 2017
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Keebler
Honored Contributor (25K+ posts)
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posted
- Welcome, Cdy. Others will be along to add to this, surely.
Q: "can lyme be dormant for decades?" Yes.
For many who have had decades long ill health, this seems likely, especially when proper treatment can return health.
However, it's certainly possible to have become infected with no knowledge of a tick bite. Often, they are tiny and may go unnoticed as their bite can numb the skin.
Q: Can childbirth trigger lyme to become active? Yes.
You should also be assessed for other tick-borne infections that often go with lyme.
Your child should also be assessed. I hope your LLMD has mentioned that if it's thought you may have had lyme prior to or during pregnancy or with breastfeeding. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- Q: ". . . treatment over the last 6 months is a gradual worsening of symptoms. Just wondering if it's really lyme or something else . . . ."
It can take years to address long standing chronic lyme and, yes, often treatment can worsen symptoms. Usually, that can be due to liver support not being up to par, though it still just a rough ride for most and it can take much longer to treat.
You are right to question this, though, it's not so much that you would not have lyme - a positive test & classic symptoms are very clear. And, an ELISA is not a good lyme test. Western Blot is better and you had a positive so that's very clear.
Yet, there could the other infections, issues to also consider. But lyme, even if all alone, can be a formidable foe, even during treatment - especially during treatment.
Be sure your LLMD is ILADS "educated" and doing a combination / rotation approach with support methods, too.
You may require a different approach to Rx / support methods. Keep in mind, though, if you are rotating Rx, with each new one, you may have a whole new period for a herxheimer reaction.
In the Liver Support thread is another set of "How to Find A LL ND" where you can also read more about various treatment considerations. If one approach is just too harsh, some kinds of adjustments should be considered.
Being gluten free & having good liver support are next two things to consider.
Sorry if the answers are too much to the point or unsettling. I have to keep this short. Consider tender conversation woven into all this, eh?
Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.
The GUT "Microbiome" also needs great care. Be sure you are replenishing good gut bacteria, etc. and avoiding gluten should help so much with the gut / leaky gut, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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Excitotoxins; MSG; Aspartame; & "Natural" Flavors (that are not likely natural at all).
GLUTEN LINKS in this set, too. Scroll down a ways. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Cdy,
Also know that heat and humidity are often very rough for those dealing with lyme to manage. Heat & humidity can make all this so much worse. As it's been warm now for months where you live, I wonder if this might be part of it.
Try to stay cool. Even getting a little too warm can send some for a tumble. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thank you all, so much - my symptoms didn't start until after the birth of my second child, and it just seemed hard to believe that Lyme could have been 'hiding out' for decades without causing symptoms. This is such a frustrating thing to deal with - it helps to know I'm not alone!
Posts: 2 | From Chapel Hill, NC | Registered: May 2017
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posted
My mom told me she remembered a round rash on me when i was 4 years old. She said she thought it was ring worm, she brought me into the DR and it had gone away by the time she could get an appointment. We looked up a picture comparing the bullseye rash and ringworm
she said "No not the scaly one, that one!" and pointed right at the bullseye rash. Had stomach pains as a kid could never figure them out, developed ADD, I was always a little weird and forgetful and off. Smart but very ditzy! got bladder infections very easily, and a lot of other weird things.
jump to age 26 I am experiencing very many lyme symptoms, just waiting on my test my LLMD thinks I have chronic lyme, I will know the 28th
Posts: 32 | From Orange County, CA | Registered: Jul 2017
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Often, when a person gets bitten and gets lyme, their immune system can handle the germ load from the bite. The immune system keeps the lyme in check, in other words.
Then, years can go by and for some reason the immune system becomes weak. This could happen if you are in a car accident, have surgery, get very sick with some other illness, have a baby, take a lot of steroids (which suppress the immune system), get a second tick bite, go through a very stressful time including a death in the family, etc.
Whenever the immune system is too weak to keep the lyme in check, then the lyme symptoms will begin to come out. If the immune system is weak for a long time, then the lyme symptoms will really blossom. So, this could be years after your original, non-eventful infection.
Likewise, to get rid of lyme and not have it come back, you need to treat the infection and begin living a healthy lifestyle--no alcohol, no smoking, no steroids, no getting behind on sleep, taking supplements to replace what the lyme has depleted, and a certain form of exercise.
The exercise recommended by Dr. Burrascano is one continuous hour of weightlifting every OTHER day. You do a full body workout each time--arms, chest, abs, back, butt, legs.
You do light weights and many repetitions so that you are able to do a full hour. First do arms for a number of minutes, then chest, then legs, etc. When legs get tired, go back to arms, etc. so that you can continue for the full hour.
My lyme doc told me that I would NEVER get rid of lyme if I did not do this exercise. I began doing it even though my main lyme symptom for 10 years was extreme muscle weakness.
I could not stand for more than a minute or hold the phone to my head for more than 30 seconds. I could not hold my mouth open to have my teeth cleaned, I dreaded having to rise up from a chair or step up a curb.
Nevertheless, I persevered. It took me months until I was able to lift weights for one continuous hour. I credit this exercise to the fact that when I completed my treatment over 12 years ago, I have never relapsed. I have the same life I had before lyme.
This exercise boosts your immune system! That is why it is essential for every lyme patient to do it. Antibiotics alone will not do the trick. You must get your immune system back to normal.
Lyme and babesiosis compromise the immune system just like AIDS. So, be sure to get good lyme treatment and be sure to strengthen your immune system so that you can eventually have a normal life again.
To read all about how this weightlifting works to strengthen your immune system, see page 31 and following in the Burrascano Lyme Treatment Guidelines found here:
Despite antibiotic treatments, patients will NOT return to normal unless they exercise, so therefore an aggressive rehab program is absolutely necessary. It is a fact that a properly executed exercise program can actually go beyond the antibiotics in helping to clear the symptoms and to maintain a remission."
I have not relapsed even though I got another bite 3 years after I completed my treatment. I only needed 30 days of treatment by my lyme doc to get rid of that new case of lyme.
I also endured terrible stress for a few years with no relapse, I also had steroid injections in my back and later oral steroids with no relapse.
So, just remember to keep your immune system strong and you will be able to keep lyme in check. We most likely always will have some lyme bacteria in our bodies, but our immune system will take care of it just like it controls viruses and other germs we have.
Be sure to go to a doctor who treats like Dr. Burrascano, meaning with combinations of antibiotics at the dosages he recommends. And, be sure to treat all coinfections you may have. You will never get rid of lyme if you do not do these things.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
The one that suppresses the immune system is Bartonella but yes you can be infected and your immune system can hold it at bay for a long time, until your immune system can't cope anymore.
"In reality (i.e. based upon evidence) we do not know how to treat bartonella infections in cats,dogs or people"- Ed Breitschwerdt
Western medicines approach to treating Bartonella fails because they don't treat the Calcifying defense mechanism and they don't treat the Cancer Like condition that Bartonella causes.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Also consider that a bite from an infected vector in current times did not register. Ticks saliva can numb the skin so a bite is usually not felt.
And some mosquitoes, some kinds of flies, fleas can also carry lyme & coinfections. Though, not just like all not all ticks are infected, not all vectors would be infected but if they are, all bets are off. It's just a possibility to keep in mind of which that most doctors are not aware.
Pets, if infected / carriers, may also transmit bartonella or other things, too, even in just a kiss on the face.
So it can be really hard to know if one became infected in recent times and it just did not manifest at that time . . . or this might be that time and the bite might have been much more recent and unnoticed. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You question your diagnosis of lyme, in part because you question the test differences:
" . . . tested positive last fall (Western blot only, not Elsa). . . ."
A positive Western Blot is MUCH more certain than a negative Elisa. Elisa is a test that most often misses the presence of lyme. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
It is actually quite normal for a healthy immune system to keep lyme at bay.
Lyme is the main culprit causing immune suppression with TBIs and it opens the door to Babs, Bart etc., which typically do not cause problems by themselves.
Posts: 184 | From CT | Registered: Aug 2006
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