Lyme Disease Community
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Avatar universal

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!
33 Responses
Avatar universal
That is great news that you got better.  Did you say you had been on antibiotics for 4 years?  How did you do in terms of side effects?  How did you control yeast?  I was just diagnosed with Lyme and prescribed doxy 400 mg day (I have been sick for years and was also diagnosed Fibro and CFS).  Your post gives me hope that the treatment might not be worse than the disease.  I have been very worried about the antibiotics in high doses for long term.  My dr said maybe 2 years....
Avatar universal
If you have had Lyme for 'years', doxycycline alone may not have the ability to access and kill the bacteria where they hide in the body.  Did your MD also test you for other infections the Lyme ticks also carry?  They often do not respond to doxy, but may to other meds.
Avatar universal
Luckily I haven't had much issues with side effects other than a mild nausea off n on and throwing up once when I had the doxy on an empty stomach! I hope your taking doxy hyclate as its absorption is not so much effected by food in the stomach.
There are two reasons I dint have yeast issues. One that I have been very regular with probiotics. I make yoghurt myself at home...its a tasty and inexpensive way of getting lactobacilli in your system...you heat milk to a temperature just below your dipped finger tolerates the heat. Add about a teaspoon of yogurt culture, put a lid on the pan & cover it with a blanket. Yoghurt should be ready in 4 to 8 hrs depending on the room temp. I have been taking almost half a litre a day...but that may be more than what's required. I don't mind because I like the taste. You could add rock salt if u find it too bland. No sugar please! Also do remember that if you're getting all the calcium from the milk that also increases the requirement of magnesium...don't forget your mag.
Secondly the fluconazole I have been taking for lyme is also an antifungal. There seems to be only one study on the net regarding effect of fluc on lyme...the results seem exaggerated but its working well for me!
I have been alternating doxy and fluc for about 3 yrs now!
I really can't say much about how long you wud take to get better as I'm no expert..but id like to say that u don't need to wait for a 100% recovery and ponder too much to live your life and be happy...staying upbeat is also good for your immune system! Honestly...after a year of depression I got to a stage when I wasn't pondering much at all about my lyme and kind of got used to the symptoms!
Avatar universal
Yes I have tested for coinfections...my results were ambiguous and since I dint have any symptoms of coinfections...haven't taken meds for them.
Avatar universal
I hope you will consider following up on those test results.  A test that is ambiguous is registering something, and I would want to know what that 'something' is and get it treated.  Best wishes to you --
Avatar universal
Hi Jackie, yes I was tested for several of the coinfections, they were negative.  I'm not sure if she tested for all possible but she tested for several.  I know she did NOT test for mycoplasma which I will probably ask her to test for next round.  I don't know how long I have had Lyme but I have been sick for many years.  Hashimoto's for 20 years which never quite left me ok even after treatment.  Fatigue has been chronic for years as have the cognitive issues.  Pain levels are newer, along with joint issues.   I am worried that the Lyme is in my brain and the antibiotics won't get to it.  We just got this diagnosis and this is the only the beginning so she may change the Rx as we go along, I just don't know.  What is the drug that is often prescribed to help break up the biofilm?  Does that help with getting into the brain?

Avatar universal
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?
Avatar universal
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!
Avatar universal
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.
Avatar universal
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.
Avatar universal
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.
Avatar universal
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.
Avatar universal
I haven't been treated for coinfections as I never had any of the symptoms....my symptoms have been almost entirely joint related...mostly the knee joint...the only thing that may indicate coinfection is lowering of my blood white cell counts by about 500 points...but that could be a side effect of antibiotics I guess....its a lot of hit n trial with dr burrascanos guidelines for me as there are no specialists where I live..

.sadly I have had to stop antibiotics for the last month due to low mag and as most antibiotics can't be given when your electrolytes have gone haywire....also there was a delay in treatment as most docs weren't convinced it was present....as it doesn't always show up on blood tests...I finally got 3 shots in last week n am feeling much better..
Avatar universal
Thank u ricobord...It really is essential to keep the hope and not give up...as u rightly mentioned...many people seem to be near disease free around d 5 yr mark....as u have relatively fewer drugs that u can take ....I guess its all d more reason u shd talk to ur doc about taking fluconazole....all drugs have side effects of course...but with careful monitoring most people have no issue...
I for one gave fluconazole a try as I had run out of options...for reasons beyond my control I have had no access to injectable antibiotics.....when I stopped responding to roxithromycin-septran combination .....I searched the net for alternative meds n came across d fluc...thankfully its worked quite well for me!
Avatar universal
I took Tindamax for a short time, which is said to be easier on the gut.  I was lucky in that my insurance covered it. (Some companies only cover Flagyl, even if it wrecks your gut.)

I really couldn't tell if it helped me or not. I didn't like how I felt on it, which I think was just side effects. (My husband felt terrible on Flagyl and he doesn't have Lyme.) Within a couple days it would cause a dark bacterial overgrowth on my tongue and gave me a constant metallic taste in my mouth. I really didn't like being on it.
Avatar universal
"I have had to stop antibiotics for the last month due to low mag[nesium]"

Take supplements!  People with Lyme infections *often* have low magnesium (Mg) levels, because the Lyme bacteria use up Mg in their reproductive process, AND the American diet can often be low in Mg too.

I took Mg when I was treated for Lyme, and I still continue to take it daily now.  It's really helpful to me and when I run out, I can tell the difference.

There is a kind of Mg supplement mixed with calcium (one brand is called 'CalMag') and I was cautioned NOT to use that formulation because it's not as effective.  Dunno why scientifically, but I drink milk and so get my calcium already, and I take Mg every day still:  any type that ends in "-ate" is supposed to be the most absorbable:

Magnesium citrate, orotate, aspartate, malate, etc.

I take a blend called Magnesium CAO, which has citrate, aspartate and orotate, and I like it a lot, but malate worked well for me too.

About Flagyl, I took it for an extended period of time as part of my Lyme treatment, and I had no problems at all ... and I am very sensitive to many many foods and meds.  Everybody's different.

Avatar universal
That's right Jackie...I have been on injectable mag now as my low mag symptoms were rather severe....while the palpitations and fatigue have disappeared....the twitching has yet to respond....most antibiotics have warnings they should not be taken when there's an electrolyte imbalance....I hope I can get back on antibiotics real soon as I don't want the lyme to bounce back...
Have not taken oral mag so far as the oral plain ones aren't available where I stay....and its no use having the calcium-mag combination formulations...have arranged for someone to courier mag oritate to me.....so I should have them in a day or two...
What your experience with the oral mag....how long would it take for the twitching to subside?
Avatar universal
I'm not medically trained, so can't tell you how quickly the magnesium (Mg) supplements would work -- I would think it depends largely on how deficient your Mg levels are now.  

I currently take 400mg of Mg twice per day (total per day:  800mg), and it works fine for me -- and I am generally sensitive to many medicines and supplements.  I was told that if diarrhea occurs, then reduce the dose.

If the issue is only low Mg, then I would expect the twitching to subside fairly quickly -- within a few days perhaps?  But that is a guess.  I would not increase the dosage beyond your initial dose for at least several days (and perhaps a week) to give you body time to build up its reserves, but this is a guess.

Let us know how you do!  Best wishes --
Avatar universal
Thank you Jackie! I will keep u posted....I am hoping and assuming for now that mag is the only issue here....dr burrascano guidelines also say that mag should take care of the muscle twitching!
Avatar universal
I have read Dr B's guidelines in the past too, and found them very helpful.  Do tell your doc that you are taking supplements etc., but you may not get much of a [positive] reaction.  Docs aren't trained much on the topic, in my experience.

I told a (nonLLMD) doc early on in my dance with Lyme that I was taking Mg supplements, and he scoffed and said it would make things worse, or something to that effect.  Well, he was wrong!  And soon after I found my way to an LLMD who treated (and cured) me.

No one here is medically trained that I am aware of, so be watchful for your own well-being -- everyone is different in their personal reactions to meds and supps, and the various infections the ticks carry is different, so there's no one-size-fits-all --- and no one here is medically trained that I know of.

That said, take care and all good wishes to you!  Keep us posted.
Avatar universal
Hi Jackie...my twitching is a lot better now after the mag shots...I managed to get oral mag ortate but not a brand with mag alone...it says magnesium orotate 500mg and di calcium phosphate 136 mg which provides free mag 32.5 mg...but it does seem like its having some effect....definitely better than not taking anything
I was wondering if liquid mag citrate that's used as a laxative is ok....that's the only mag it seems that's available without calcium? The store will get that for me tomorrow!.
Avatar universal
I am glad to hear Mg is helping!  

The combination of magnesium and calcium is not a bad thing in and of itself -- my comment was made in thinking about a particularly well-advertised brand here in the US that does not have a good reputation among some.  

But your pharmacist may be able to speak with you knowledgeably about what is the best approach to taking in more magnesium -- I have learned over the years that pharmacists in the US are not relied upon as much as they could be, because they have a wealth of knowledge.  All the power here is given to the MD.

Telling your pharmacist that you want to increase your intake of "Mg [something ending in -ate]" may get you just the right thing, and the compounds of Mg and calcium that are available to you may be much better quality than what we have in the US.

Sorry if this is confusing.  What I mean to say is:  taking magnesium-and-calcium is not (as far as I know) a bad thing, but the brand of that combination most commonly sold in the US does not have the best reputation.  Your pharmacist can likely guide you.
Avatar universal
Thx Jackie...I will speak to the pharmacist regarding that!
Avatar universal
Let us know what you hear from the pharmacist and how you do -- best wishes!
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