posted
I've been on Malerone (2 pills)for about 5 weeks now.
Im also still taking biaxin, ceftin and plaquenil for Lyme
My stabbing bone pains seem to have stopped for the most part.
I no longer have wierd sticky night sweats that seem to focus around my neck...yuck...dont miss that one!
My energy level has improved and I get much less "backlash" after doing something active
My muscle twitching has reduced, but is still there, even though still on klonopin.
My mind has cleared more each week and I can read and write better as well. I still have slow processing and some glitches where momments in time fall into one of the holes in my brain
So, even though most tests showed negative, with the exception of one showing traces of babs DNA, it would definitely appear I have babs, as the malerone is working.
In a very stange and ironic sense.....Yeah! One more thing is finally being treated.
There is a particular "set" of symptoms that still trouble me, in that they are not improving with the others.
My vice-like headache, loud ringing ears, and sound sensitivity remains unchanged.
The symptoms always increase or decrease together, as though they are all being caused by the same thing. Ive had them for almost 4 years now, since I first became unknowingly ill with Lyme.
Klonopin helps the headache to a degree but this drug looses its effectiveness over time.
I also showed traces of Ehrlichia (spelling?) but I was under the impression Lyme meds took care of this one????
So, Im wondering if anyone has thoughts on the remaining, unimproved "set" of symptoms?
Is it too soon to tell?
Anyone have this set of symptoms caused by something else then treated and healed?
Thanks
BJK
-------------------- BJK
Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
WOW! Sounds like you are getting some good results!!
Not soon enough, I know.. but good just the same. That is so wonderful!
If that headache.. the grip hard one... only hits around a "certain time of month"... you might want to check into hormones.
If it is more regular... my guess is you got the exact reason right already when you said..
"Is it too soon to tell?"
I can't say anything for sure.. but my gripper headache took the longest to improve.. months actually. But when gone.... ahhhhhhh... so nice!.
Keep in mind I am NOT a doctor and this is NOT medical advise. Please check with your doctor about this symptom.. especially if it gets worse.
These symptoms have been there ever since I started getting more sick back in 04'
My doc knows about them.....says takes time
Your post was encouraging, thank you. I cant wait for that Ahhhhh.
Did anything in particular help dull this for you?
I have been on KLonopin for 1.5 years now, this was initialy prescribed by a neurologist to stop severre muscle issues...but it dulled the headache as well.
I think its loosing its effectiveness, as this drug does over time, and Im maxed out on dosage.
Ive heard magnesium helps things like this and other muscle issues, not sure how much...what type etc?
Thanks again,
BJK
-------------------- BJK
Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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posted
BJK's a guy, I don't think it's a time of the month issue. But it was a good suggestion for others who might have this type of problem.
BJK, I take 450 mg. magnesium twice daily. In the Cowden protocol it says to start with 300 twice daily and add too that in 150 mg increments until you are having 2 or 3 bowel movements per day (in order to detox).
The thing about magnesium is, you will know when you are taking too much because it will cause diarrhea (remember Milk of Magnesia?).
I found epsom salt baths good for aches .... but headaches wasn't a symptom for me, so I don't know if it works for that. It's a good source of magnesium though.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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While you are correct in your asertation that I myself am very unlikely to have any "monthly" pattern to my headache, due to my gender as you suggested.
However, one should not quickly abandon the monthly gender aspect as a possible cause or contributer to this symptom.
I do live with four other females, thus we cannot rule out the possibility that the headaches may be a product of four crossover time patterns resulting in one constant situational headache.
In calculating this, one may conclude that living with only 4 females is unlikely to result in a 24hr headache, thus, we must consider also the fact that there are 2 other males in this 1600sq ft. dwelling.
These factors alone, when combined has the potential, theoretically, to result in enough stress to produce a 24hr muscle tension headache.
hmmmm....Nah, I think its just the Lyme or Babs
I'll try out the magnesium and epsom salts, thanks so much for the advice.
BJK
-------------------- BJK
Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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While you are correct in your asertation that I myself am very unlikely to have any "monthly" pattern to my headache, due to my gender as you suggested.
However, one should not quickly abandon the monthly gender aspect as a possible cause or contributer to this symptom.
I do live with four other females, thus we cannot rule out the possibility that the headaches may be a product of four crossover time patterns resulting in one constant situational headache.
In calculating this, one may conclude that living with only 4 females is unlikely to result in a 24hr headache, thus, we must consider also the fact that there are 2 other males in this 1600sq ft. dwelling.
These factors alone, when combined has the potential, theoretically, to result in enough stress to produce a 24hr muscle tension headache.
hmmmm....Nah, I think its just the Lyme or Babs
I'll try out the magnesium and epsom salts, thanks so much for the advice.
BJK
That is friggin funny stuff.....lol, at least you have good sense of humor while going through this crap...... Posts: 208 | From Hudson Valley, New York | Registered: Mar 2008
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posted
Im not 100% sure about this, but after alittle research it would appear that Babesia, inside blood cells doesnt pass through the BB barroir either so this should not impact malerones effectiveness...any other thoughts on this would be appreciated.
Ive been on Malerone for quite a few weeks now and most of my symptoms are improving, including cognitive symptoms in particular.
I dont know how this is working but the malerone is definitely helping.
-------------------- BJK
Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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jamescase20
Unregistered
posted
I can tell you this, I took malarone for about 3 weeks before switching to lariam, and I noted that instantly I felt some pings in my right brain on lariam, and didnt feel anything on the malarone in my brain. Been on lariam now 3 weeks and the migraines mostly gone. I added lexapro and really took it out big.
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posted
Wow James, Thats great! I'll have to keep this one in my notes if my improvement turns around, it wouldnt be the first time.
Thanks James
BJK
-------------------- BJK
Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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tailz
Unregistered
posted
Somehow I don't see the humor in blaming headaches on women or hormones.
I blame them on cell phone towers, created by men and testosterone, of course.
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posted
Sorry tailz, no offence intended,just trying to have some fun (very unusual for me). I love my Wife of 19 years, and my five children very much, and now they have thier dad back. Consequently, they thought it was funny.
Not to disagree with you view on the affects of the waves and electromagnetic fields everywhere....I have always believed it cannot he healthy,
However in my particular case before I was infected with Lyme I didnt have any of these symptoms at all, I was very healthy and strong.
But I do live in an area where a "city" is actually pretty small and we have relatively few of these factors than many places. I lived in a town for many years.
Before I was infected with Lyme, babesia and ehrlichia I saw my PCP once in about 8 years (she didnt like this).
After infection/bite I had:
painful stiff joints, flu-like sickness that never went away, pain in my neck, a vice-like headache, sound 0ver-sensitivity, touch over-sensitivity,
Balance problems, stress began to exasperate all of these, disorientation, confusion, poor/difficult decision making, getting lost, abdominal pain,
chest pain, constant weakness/tireness fatigue, muscle pains moving around my body, stabbing bone pains, word block, trouble reading at all,
Then started muscle twitches, my body "freezing" when attempting simple tasks, teitches became large jerks, my face began to sag and I could no longer smile,
then the mucle jerks turned into full blown whole body chorea with my entire body twisting and writhing 24 hrs a day,
Organ pain, breathing problems, severre fatigue and inability to care for my self, my entire body was now in pain and I slept and everage of 2 hrs/day, sweats,
Then I could barely get from my bed to the bathroom (15 feet), cognittive abilities had deteriorated to the point where I could barely speak and could not understand what was happening around me much of the time
Then I became suicidal, combative, uncontrolled outbursts and swearing that sounded to others as garble.
This all took about 3 years, I listed these somewhat chonologically.
Then....finally....I was diagnosed with Lyme Disease.
I was immediately started on antibiotics and within 2-3 weeks I could walk! My mind started to clear, the pain decreased, and my body stopped twisting and writhing...all within one month on antibiotics.
Now one year later being treated for Lyme and babesia all but the set of symptoms I mentioned are either totally gone or steadily improving.
Multiple tests have confirmed thes oranisms are in my body....so
In My case both clinically and logically it is very obvious that my illness is caused by destuctive bacteria and other mycoplasma deeply embeded in my body and brain.
How the factors you mention may affect my ability to heal, I dont know, but my illness was not caused by them.
Once again, no offense intended...very sorry
BJK
-------------------- BJK
Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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posted
HI Chris, your post "I have a question. What causes tinglyness
and
facial weakness slightly? my feet felt numb and
tingly for a good about 8 months and now my face
feels weird. any insight would be appreciated
thanks!"
You will get more responses and information if you post this as a new topic in Medical questions.
Just go to Medical questions and there should be a post new topic icon...click it and add a title for your post then ask your questions in the body of the post....ok?
BJK
-------------------- BJK
Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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But it was a good suggestion for others who might have this type of problem.
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What causes tinglyness 
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