This is topic 'The Great Experiment' - Self Treating; need info in forum Medical Questions at LymeNet Flash.


To visit this topic, use this URL:
https://flash.lymenet.org/ubb/ultimatebb.php/topic/1/108413

Posted by oranuf (Member # 32363) on :
 
I have some classic symptoms of Lyme. Presented with a rash initially (last year or the year prior, i just don't recall), tested positive (don't recall which tests) was treated for the magical 21 days. Never retested.

No health insurance, no money for doctor visits.

Starting to get strange aches in joints; persistent neck pain for many months (could be occupational). I most suspect lyme due to my growing fatigue and some severe brain fog and disconnect. Problem with what has been described as "jumpers knee" - in both knees but primarily might right knee for some time now. Index finger joints both feel awful right now. Seems like I have a lot more eye floaters, but no flashing lights to indicate a problem with retinal detachment or "rips".

I misread the guidelines at http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf and ordered Doxy and Flagyl from a reputable online pharmacy. Now after re-reading, I saw on page 15 of the guidelines that "Because there is laboratory evidence that tetracyclines may inhibit the effect of Flagyl, this class of medication should not be used in these two- and three-drug regimens."

My questions:

1. What Doxy dose have you guys been on, with some success, or what is most common? 200MG twice per day? I ordered enough for 62 days at this dosage (250x100mb tabs). May need another order to go a full four months (a friend had a four month treatment and successfully resolved, likely because it was caught early enough... i may or may not be in the same situation of course).

2. What should I do with the Flagyl - cancel the order? Or wait until the course of Doxy is complete, then start on Flagyl?

3. If consensus is towards taking the Flagyl after the Doxy course is complete, at what dosage have others here been prescribed?

It makes sense to me to use an abx with something that also wipes out the spore form, which is what my line of thinking was when I placed my order.

I titled this post "the great experiment" because I'm looking for a herx reaction, and possibly a temporary clearing of my brain fog, as others appear to have achieved upon initial treatment. If it happens, I'll believe I'm on the right track and will make efforts and spend the money to contact doctors with my information and seek some really qualified treatment. I need to really study the guidelines I linked to above, and I know the risks of abx but have tolerated both amoxy and doxy in the past, so i'm not as concerned (though I've never been on a longer-term abx course like what is proposed here). Never been on Flagyl; a little worried about that one.

Lastly, I need a simple, straightforward regimen for "detox" to go with the mounds of yogurt I'm sure to be consuming during this experiment.

Thank you for sharing your drug dosage experience. yes, I know you're not doctors...I hold you to nothing of course.
 
Posted by oranuf (Member # 32363) on :
 
P.S. Adult male of 42, 264lbs., relatively healthy overall.
 
Posted by nefferdun (Member # 20157) on :
 
I sent you a PM. I forgot to mention the importance of taking probiotics while on abx.
 
Posted by hsmom (Member # 31999) on :
 
oh my goodness, you sound like me. I have been diagnosed w/ lyme, treated for many months on clarithromycin- didn't seem to do any better on this, Dr had me start pulse therapy- but I started to get dark stains on teeth and if I didn't see results by now, what's the point. I am looking to self treat. Taking herbs now, but still want to do more-

If anyone can help with ideas please pm me.

I would also like to know how you order rx online w/out a dr script.

Heres my info= 46yo female, positive diagnosis 2yrs ago, but have had symptoms for more than 7 yrs. did several courses of amoxicillian, doxy, and clarithoromycin(1 yr) no improvement. Have traveling knee pain, neck pain, finger and toe pain, headaches, foggy brain(has gotten better)hip pain after sitting.
 
Posted by anonymiss (Member # 32018) on :
 
I've been taking a combination of Flagyl (500 mg 2x day) and doxy (100mg 2x day) and experienced a significant reduction in my symptoms after just a few days. I'm on my last day of Flagyl so I'm going to up my dose of doxy to 400 mg a day and keep my fingers crossed.

Where did you get the flagyl? is it the real deal? I may need to get some just in case the doxy doesn't cut it... PM me please?
 
Posted by glm1111 (Member # 16556) on :
 
Antiparasitic herbs and salt/c saved my life after 5 yrs of abx. Lots of info on here if you type parasites into search bar at the top and also salt/c. Coconut oil and kefir also helped. Maybe look into Rife also.

Gael
 
Posted by oranuf (Member # 32363) on :
 
Update: My message above was posted back in June. Since then my "symptoms" have stayed pretty much the same and truly do seem much more occupational in nature than Lyme.

However, my fiancee has had strange symptoms since October 2010, and since June of this year, has gone totally downhill. it took until just this past week (October!) to find an LLMD. After so many dr visits. We paid $600 out of pocket, she was on Doxy for two days and last night appears to have had a pretty violent herx. No doctors in our area would listen; in the meantime, she's lost nearly a year of her life... we are now squarely in Lyme territory.

And yet, we consider ourselves "the lucky few" -- we "only" spent a year trying to find someone to see the evidence and agree on what this was; we had a new primary care physician who worked diligently to find the LLMD, we had the money and resources to be able to visit the LLMD, we had the money for the abx, and we have almost immediate validation that there is LD present.

Some people go years, have no time or money for treatment, cannot find an LLMD, and have to go through much more before they get any sort of confirmation... many accept "fibro" as the dx, and go on their miserable way.

Welcome to health care in america.
 
Posted by gigimac (Member # 33353) on :
 
I know oranuf, it is so sad! I too spent a year looking for a diagnosis. If it weren't for the internet, an open mind, and helpful people recommending an llmd I would still be wandering aimlessly from dr. to dr.

I am angry that dr.'s refused to acknowledge the possibiltiy of lyme when I openly questioned them. I can't help but think of all the lost time... Anyway, I am now focusing on getting well and I hope your fiancee can recover quickly!!
 
Posted by dal123 (Member # 6313) on :
 
which online pharmacy, plse send web url, did they require a prescription or can their in house dr do the rx. Need to order but am scared that i would be ripped off or get medicine thats not the real stuff.
 


Powered by UBB.classic™ 6.7.3