Aa
sharing my experience
Hello everyone...I've had lyme for 5 yrs & been on meds since 4. almost asymptomatic now....wanted to share some things I learnt in my lyme journey..
1. For those who have symptoms in their knees alone or predominantly....I wud suggest u buy an infrared lamp. Direct it to the back of your knee joint...this is where all the blood vessels supplying your knee joint are...not only does the heat weaken the bugs...the blood vessels also dilate...pumping a higher dose of antibiotics into your knees. U can do this 20 min at a time upto 6 times a day. Plz check ur lamp instructions for how near u can keep the lamp. It worked very well for me.this can't be done for the head region as it can be very dangerous and cause a seizure if used there
2. Do give fluconazole 200 mg a try....it works well for some people & worked for me!
Other drugs I've cycled are doxycycline 200 mg twice a day & erythromycin-septran.
3. Do read Dr Burrascanos guidelines...don't be careless with add ons (meds other than antibiotics) he's listed as mandatory....I didn't and nearly had a seizure from low magnesium.
4. Don't lose hope....I'm doing so much better I'm sure I will be sharing my complete recovery story in a couple of months!
1. For those who have symptoms in their knees alone or predominantly....I wud suggest u buy an infrared lamp. Direct it to the back of your knee joint...this is where all the blood vessels supplying your knee joint are...not only does the heat weaken the bugs...the blood vessels also dilate...pumping a higher dose of antibiotics into your knees. U can do this 20 min at a time upto 6 times a day. Plz check ur lamp instructions for how near u can keep the lamp. It worked very well for me.this can't be done for the head region as it can be very dangerous and cause a seizure if used there
2. Do give fluconazole 200 mg a try....it works well for some people & worked for me!
Other drugs I've cycled are doxycycline 200 mg twice a day & erythromycin-septran.
3. Do read Dr Burrascanos guidelines...don't be careless with add ons (meds other than antibiotics) he's listed as mandatory....I didn't and nearly had a seizure from low magnesium.
4. Don't lose hope....I'm doing so much better I'm sure I will be sharing my complete recovery story in a couple of months!
Thank you so much for the info, I will ask my doc about the fluconazole. I also am working on mindfulness and trying to turn off the negative brain chatter, so I hear what you are saying about that. How do you dose the fluconazole? Is it 6 weeks of antibiotics and 6 weeks of fluconazole? Do you take the yogurt every day? Do you wait until after the antibiotic and if so how long? How many times a day do you take the yogurt, I guess I am asking? And how do you time it so the antibiotic doesn't immediately kill it?
Just wrote you a long email and posted it, much of which you have probably already heard from me and others.
You are trying very, very hard, I know, but please consider cutting to the chase and going to a Lyme doc rather than try to figure all this out yourself. This is cutting-edge medicine, and when you're as ill as you seem to be, figuring it all out is terribly difficult. Lyme is not a do-it-yourself project.
I know Texas is not necessarily known for being open-minded when it comes to Lyme docs, but there is a Texas Lyme disease association that I would contact without delay and ask for guidance.
Just google/search for
-- txlda --
and you will find it easily.
Go for it!
You are trying very, very hard, I know, but please consider cutting to the chase and going to a Lyme doc rather than try to figure all this out yourself. This is cutting-edge medicine, and when you're as ill as you seem to be, figuring it all out is terribly difficult. Lyme is not a do-it-yourself project.
I know Texas is not necessarily known for being open-minded when it comes to Lyme docs, but there is a Texas Lyme disease association that I would contact without delay and ask for guidance.
Just google/search for
-- txlda --
and you will find it easily.
Go for it!
So glad you're feeling so much better! I am on the 2 1/2 year mark of treatment and am encouraged by stories of people who did get better after 3,4,5 years of treatment. It's a daunting prospect, but it's better than the alternative. With my 2 coinfections and how steroids for a misdiagnosis suppressed my immune system, I think these infections may have killed me without aggressive treatment.
Unfortunately I can't take some of the meds that might really help me. Tetracyclines make me very sick and I'm allergic to Sulfa drugs.
Unfortunately I can't take some of the meds that might really help me. Tetracyclines make me very sick and I'm allergic to Sulfa drugs.
Hang in there! I'm glad you got a diagnosis.
Generally, people with bad cognitive and neuro problems from Lyme need IV medications in order to penetrate the nervous system. A high dose oral penicillin along with probenecid might do the trick, but pencilin doesn't work for every Lyme patient, not to mention that many people are allergic to it. It can stress the kidneys, too.
I found that Omnicef, supposedly a good oral abx for Lyme, resulted in me getting worse within a month. It was useless against my Lyme. But then I got my Lyme overseas. I'm confident I have a different species of Lyme.
Just know that different meds work differently in different people. Immune systems vary, strains and species of the bacteria vary, and it's not a one size fits all treatment, in spite of what the IDSA and CDC keep insisting. That's why you need a doc with experience in treating Lyme.
As far as the fluconazole, know that long term use can cause liver damage. Even short term use can be hard on the liver. If you have elevated enzymes, you really can't take it.
Supplements are much easier on the body. I tried several and Yeast Cleanse worked the best for me. But I take the max dose every day. If I drop the dose or stop, I notice an increase in yeast within 2-3 days.
Generally, people with bad cognitive and neuro problems from Lyme need IV medications in order to penetrate the nervous system. A high dose oral penicillin along with probenecid might do the trick, but pencilin doesn't work for every Lyme patient, not to mention that many people are allergic to it. It can stress the kidneys, too.
I found that Omnicef, supposedly a good oral abx for Lyme, resulted in me getting worse within a month. It was useless against my Lyme. But then I got my Lyme overseas. I'm confident I have a different species of Lyme.
Just know that different meds work differently in different people. Immune systems vary, strains and species of the bacteria vary, and it's not a one size fits all treatment, in spite of what the IDSA and CDC keep insisting. That's why you need a doc with experience in treating Lyme.
As far as the fluconazole, know that long term use can cause liver damage. Even short term use can be hard on the liver. If you have elevated enzymes, you really can't take it.
Supplements are much easier on the body. I tried several and Yeast Cleanse worked the best for me. But I take the max dose every day. If I drop the dose or stop, I notice an increase in yeast within 2-3 days.
I have been cycling doxy and fluconazole 30 days at a time...I'm taking 200mg of fluc once a day.
As other members have rightly pointed out you should not be doing anything without medical supervision and regular testing of liver and kidney function.
Yes I've been taking the yogurt everday....about twice a day...but I may be overdoing the quantity....its definitely a good idea to have a 2 or 3 hr gap especially with doxy as it binds with it and reduces its effectiveness. And of course the doxy kills the lactobacilli in d yoghurt. Taking yogurt with the fluc should not be necessary as its basically an antifungal and should not disturb the good bacteria in the gut....but I took it anyway and have made it a part of the daily diet.
As other members have rightly pointed out you should not be doing anything without medical supervision and regular testing of liver and kidney function.
Yes I've been taking the yogurt everday....about twice a day...but I may be overdoing the quantity....its definitely a good idea to have a 2 or 3 hr gap especially with doxy as it binds with it and reduces its effectiveness. And of course the doxy kills the lactobacilli in d yoghurt. Taking yogurt with the fluc should not be necessary as its basically an antifungal and should not disturb the good bacteria in the gut....but I took it anyway and have made it a part of the daily diet.
I have been cycling doxy and fluconazole 30 days at a time...I'm taking 200mg of fluc once a day.
As other members have rightly pointed out you should not be doing anything without medical supervision and regular testing of liver and kidney function.
Yes I've been taking the yogurt everday....about twice a day...but I may be overdoing the quantity....its definitely a good idea to have a 2 or 3 hr gap especially with doxy as it binds with it and reduces its effectiveness. And of course the doxy kills the lactobacilli in d yoghurt. Taking yogurt with the fluc should not be necessary as its basically an antifungal and should not disturb the good bacteria in the gut....but I took it anyway and have made it a part of the daily diet.
As other members have rightly pointed out you should not be doing anything without medical supervision and regular testing of liver and kidney function.
Yes I've been taking the yogurt everday....about twice a day...but I may be overdoing the quantity....its definitely a good idea to have a 2 or 3 hr gap especially with doxy as it binds with it and reduces its effectiveness. And of course the doxy kills the lactobacilli in d yoghurt. Taking yogurt with the fluc should not be necessary as its basically an antifungal and should not disturb the good bacteria in the gut....but I took it anyway and have made it a part of the daily diet.
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