sharing my experience

[lady999]

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!

[lady999]

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!.

[JackieCalifornia]

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.

[lady999]

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!

[JackieCalifornia]

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 --

[lady999]

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?

[JackieCalifornia]

"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.