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Post Lyme Syndrome and advice on recovery

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Posted 2/26/2014 2:39 PM (GMT 0)
Hi everyone,

I joined because I'm looking for a bit of advice on recovery post treatment, and I'd be glad to hear of other people's experiences. I'm 23yo, and apart from the Lyme, a very fit and active person. I got bitten in April last year, and after a struggle with the NHS, I eventually tested positive with active LD and started treatment in October, so I went untreated for around 5 months. I was prescribed with 3 months of doxycycline 2x200mg daily. My main symptoms were headaches, fatigue, horrible brain fogs and lack of cognitive function, weakness and shakiness in my limbs and aches and pains in my hands, along with a whole host of other more minor things. I noticed a great improvement over the 3 months, and at the end I was almost back to normal, although I felt the symptoms lingering a little bit, they were much reduced. I've now been off the doxy for 2 weeks, and I'm noticing my symptoms are coming back: headaches, brain fog, aches and pains, fatigue etc. I'm seeing an infectious diseases specialist in the NHS, and he is insistent that the bacteria will have long been eradicated from my body.

So why are my symptoms coming back after finishing the abx? I felt great when I was still on them! Has anyone experienced this? I have done some reading about post lyme disease syndrome, there seems to be some suggestion that your body and tissues remain damaged/inflammed for some time after and that this takes a while to settle down. I have also seen suggestions that the spirochetes leave antibodies behind that takes your body a while to remove, however it triggers a response similar to an active infection. Of course my worst fear is that the infection hasn't really gone, and that my doctor will refuse to give further treatment....

I was just interested to hear if anyone else has had a similar experience, and whether they gradually started to feel better after finishing treatment. Any advice to help me get over it more quickly would also be welcome :) At the moment I'm eating a healthy diet, trying to stay as active as possible, taking detox baths and taking ibuprofen to help with any inflammation.

Wishing everyone a speedy recovery

Holly xxx
Posted 2/26/2014 3:27 PM (GMT 0)
Holly,

I have never taken antibiotics for my Lyme so I can't really comment on dosages or the right combo's for antibiotics. Although Doxycycline is very good at killing the Lyme bacteria, the people on here who use abx are on a couple different kinds at a time, and are changing quite often. Infectious Disease doctors are typically the most narrow minded when it comes to Lyme, they feel it doesn't exist in the Chronic stage. Unfortunately you may be out of luck on that one.

I am still treating my Lyme, so I can't talk about relapses. But unfortunately I may feel that your infection may not be gone. But don't take my answer as truth, it is just a hunch. The bacteria can hide in a substance called biofilm which is resistant to certain types of antibiotics/herbs and the bacteria also can change form making it more difficult to treat. This is why a cycle of different antibiotics/herbs need to be used it treatment.

The majority of people on this forum are on a no sugar, no gluten diet. Sugar feeds the bacteria and gluten promotes inflammation. I hope you were taking probiotics while on antibiotics, if not I would definitely recommend starting taking them. The antibiotics kill the bad and good bacteria and you need to replenish the good bacteria with probiotics.

People here including me, are on herbal protocols and have healed using no antibiotics at all. This is an option for you if the ID doctor chooses not to treat you anymore. Your doing a good job sounds like, and half the battle is won. You may need to just kick the remaining infection to the curb! Hopefully one of the veterans around here will pipe in and give some input. Take care!

LC
Posted 2/26/2014 5:11 PM (GMT 0)
Many Lyme Literate Doctors treat the patient for at least four months beyond the resolution of symptoms. They do not recognise a "Post-Lyme Syndrome", and will treat the patient until they are back to full health.

You might need a longer course of antibiotics, a rotation through different types, such as the classes of antibiotics that are known to kill the cyst-form of the disease. It might be that you were infected with another tick-borne disease when you contracted Lyme disease and that is interfering with your treatment.

Unfortunately, you are unlikely to get that kind of care within the National Health System. Others like you have sought out private care or are using the different herbal cures that have proved effective.

In any case, I hope you will continue to seek care and not just put up with the symptoms.
Posted 2/26/2014 8:11 PM (GMT 0)
Welcome Holly. I'm sorry to hear that you've been struggling with Lyme.

I've known several people in my area that feel better while on abx, but start to feel worse after stopping treatment, even some who have been on them a long time. I'm not saying that will be the case with you, though. It just varies from person to person.

I'd suggest you find a LLMD to treat you, since they have more knowledge of treatments. You can start a new thread to ask for one in your area, just say "looking for LLMD in_____, or something similar. You will need to make sure your email is enabled in your profile so people can send you the names, since we aren't allowed to post them on the forum.

I hope you'll find a good one so you can get past the infection. Keep us posted on how you're doing.
Posted 2/26/2014 10:06 PM (GMT 0)
Hi Holly,

Ive relapsed every time I come off the abx for more than a couple of weeks. I am on higher doses than 400 mgs doxy also. If you dont have a LLMD get one as soon as possible. Many people need to be on abx 2 years or more. Hope you are healed soon.
Posted 2/26/2014 10:07 PM (GMT 0)
I'm seeing an infectious diseases specialist in the NHS, and he is insistent that the bacteria will have long been eradicated from my body.

Pay no attention to what this person is telling you. Listen to your own body. You have relapsed and he is a brainwashed robot.

Post Edited (BarnGurl) : 2/26/2014 3:40:45 PM (GMT-7)

Posted 2/27/2014 2:17 AM (GMT 0)
Hi Holly,

Doxycycline is a good antibiotic but it sure didn't get rid of my lyme. I also had the neurological issues - doxy does not readly cross the blood brain barrier so if you were having any neurological issues - it is likely that it did not kill the bacteria in your CNS/brain which could then in turn, reinfect your body once the abx are gone.

I would highly recommend checking out our "New to Lyme, Start Here" thread even though you aren't super new to lyme. I would also recommend getting an ILADS trained Lyme doctor (LLMD) that can prescribe the correct antibiotics for your symptom picture.

There are many ways to heal from this disease whether you choose traditional western medicine, herbs, or homeopathy. Keep an open mind. I'm glad you found us! You can request the name of LLMD's on this site by starting a post..."Looking for LLMD in _____" Just make sure to activate your email in your profile so folks can email you suggestions as we do not allow drs names to be posted on this site.

~beth
Posted 2/27/2014 10:31 AM (GMT 0)
Thank you all for your kind advice. I am based in the UK, and unfortunately there seem to be a complete lack of LLMDs here. I have however managed to find a clinic that will take me for only minor expense as the proceeds go to charity. There they try several different antibiotics at once, which seems to be the prefered method of many LLMDs in the states (from what I've read on the internet).

opugirl said...
Hi Holly,

Doxycycline is a good antibiotic but it sure didn't get rid of my lyme. I also had the neurological issues - doxy does not readly cross the blood brain barrier so if you were having any neurological issues - it is likely that it did not kill the bacteria in your CNS/brain which could then in turn, reinfect your body once the abx are gone.

I would highly recommend checking out our "New to Lyme, Start Here" thread even though you aren't super new to lyme. I would also recommend getting an ILADS trained Lyme doctor (LLMD) that can prescribe the correct antibiotics for your symptom picture.

There are many ways to heal from this disease whether you choose traditional western medicine, herbs, or homeopathy. Keep an open mind. I'm glad you found us! You can request the name of LLMD's on this site by starting a post..."Looking for LLMD in _____" Just make sure to activate your email in your profile so folks can email you suggestions as we do not allow drs names to be posted on this site.

~beth

Thank you for your reply. The clinic I am planning to try use pulsed metronidazole (flagyl) which I have heard is good for bacteria in the CNS/brain and cystic lyme. Do you have any knowledge about this?
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