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Posted: Sat Mar 13, 2010 10:13 am Post subject: Worsening of symptoms
I just not have a worsening of symptoms-- I have had a major crash from just 1 week of flagyl/ 3 weeks diflucan and some strong herbal tea/sauna in Noveber. So terrified of next steps. I went from woring with brain fog and some body jerking/twitcihng, feeling not strong , and some foot scuffing-to now numbness on left side spreading right, difficult holdin gup my head -neck feels week, major jerking/twitching all over, difficult speaking at times, sleeping only a fe hours a night on medicatin,cognitive much much worse, dizzy/sick feeling i nbrain, eye pain/extreme pressure in both eyes, gait off, coordination, spatial off, left side numb so weird walking , weak/shaky- , nervous system on overdrive, head jerks forward sometimes (almost feels close to seizure). Went from walking 3 miles every day to now on the couch/floor- In agony most of the day. It's not pain/it's nervous system stuff in my head /neck mostly. So just curious if any others have had major crash's like this from drugs? I'm an oddity I know. Optic neuritis and MS symptoms but no lesions in 2006 and 2008. Seeing a neuro again -- this isn't turning arround for me/just keep spiraling downward now for 3 months. It's been a nightmare. Sorry I'm whining--I know there are lots on here with severe disability. Just trying to figure out where to go from here. I feel stuck and also paralyzed in fear since each day I have growing synptoms like numbness not subsiding I never had before and my feet not going where they need to.
Selma -- After three months of these symptoms, you are entitled to complain and push your GP or internist to seek some answers. Start with a thorough physical exam, and thorough blood tests of insulin, cortisol, all the thyroid hormones, ANYTHING your doctor can think of.
I have never experienced all the symptoms that you have now. It must be a terrifying time for you! You are not whining; you need some help -- I hope you have a good, compassionate physician who is willing to give you that help.
Joined: Jun 18, 2004 Posts: 1725 Location: Bedfordshire UK
Posted: Sat Mar 20, 2010 11:08 am Post subject:
Selma, trying to answer both your topics in one go, basically, if you have a chronic infection of Cpn like I did, or any other chronic infection treated by the same abx, you will have severe reactions at first. Mine lasted a couple of weeks. However, like Lynda says, you really need to see your GP or internist to endeavor to find out what is wrong with you, then you will know where to start. Well, you won't, actually, if it turns out to be MS but just knowing what is the trouble is a start and the lack of worry will be a help to start with.
Sarah _________________ An Itinerary in Light and Shadow Completed Stratton/Wheldon antibiotic regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. EDSS was 7, now I could pass for perfect most days.
Posted: Wed Mar 24, 2010 8:54 am Post subject: update
Neuro does not believe it is MS-my symptoms overwhelmed him. MRI of brain was normal (from last week)
GP says chronic lyme (he is a believer) but my case is too advanced/difficlut for him. He suggests as sleep study!
I've been in hell for 4 months now and not improving/not sleeping/not stablizing. This was set off by the flagyl/diflucan that pushed me over the edge .
I don't think I can tolerate abx right now given how sick I am -very weak shaky and still getting no sleep- numbness is spreading.
sarah-you said your big die off was only a couple of weeks? the folks on lyme boards seem like they are ill for a very long time on abx.
I'm not sure I have many options at this point. My case is odd.but the progression from fibro to neurological disease points to lyme . My mother has fms/cfs and sisters wiht issues so I think I could have combination of immune issue with lyme-compounded by MCS and detox issues. And I can't sleep! always been a fussy sleeper-but this explosion- has totally disrupted my sleep cycle and which I think is contributing to the downward spiral.
Just curious if some on the cpn protocol have had huge reactions that set off downward spiralson abx that the did not recover from? Curious on that.
Joined: Jun 18, 2004 Posts: 1725 Location: Bedfordshire UK
Posted: Wed Mar 24, 2010 12:17 pm Post subject:
Selma, die-off lasted far more than a couple of weeks, but a true herxheimer reaction lasted for a couple of weeks when I first stated antibiotics: I was delirious and feverish amongst other things.
Lyme disease is probably different in reactions to C pn which is what I had. I never had any pain, which is typical of early lyme.
People on the Cpn protocol often have worse reactions than me but never, so far as know, get on a downward spiral from which they don't recover.
Have you tried melatonin for sleep issues? There is a large section about it on my husband's site: it is very good and totally non-addictive:
If you can get to sleep you might end up feeling able to try antibiotics, because if you have lyme disease that is the only way to properly get rid of it.
Sarah _________________ An Itinerary in Light and Shadow Completed Stratton/Wheldon antibiotic regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. EDSS was 7, now I could pass for perfect most days.
Posted: Thu Mar 25, 2010 7:50 am Post subject: thank you
Thank you sarah-yes I think the herx reactions from lyme can be horrific....maybe that's what I experienced/sent me on spiral.. not sure.I've tried melatonin-in the past before this crash it helpded. Right now nothing is helping with my entire body in overdrive/twitching/jerking/brain stuff going on. I'm looking into more drug alternatives since the drugs I've tried are not working. Which I hate. I'm a person who never took an aspirin or sleeping meds prior to now. Now I' looking at taking everything! The lyme docs are intense.I hope I can figure this out and find the righ tpath to healing. Thanks again.
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