- This topic has 16 replies, 5 voices, and was last updated 15 years, 6 months ago by
.
-
Posts
-
All- I am 4 weeks into Minocin (200 mg/day) treatment for chronic fatigue/fibromyalgia. (other stuff in the mix includes Lyrica, Cymbalta, Nystatin, lots of vitamins and minerals, gluten- free (well, trying to be), recommended to go dairy free (just started that)).
I am definitely herxing. Joint pain and muscle pain ridiculously bad but a bit better than it was a few days ago, but the brain fog is what has really made me incapacitated. About last Wed I started feeling really “disconnected” – not dizzy, but like my brain and head are not attached correctly to my body. My reaction time is really slow, my thought processes are a mess, and I feel very nervous about driving. It's hard to describe, but I'm sure some of you know what I mean. And my vision is “off” – not really blurred, more like it splits into two distinct images then remerges.
Has anyone else experienced anything like this? Note I just got up to the full dose of Nystatin 500000 (2 pills 2x/day – total of 4) last Monday. I'm not sure if this is a reaction to something or if it's just “part of the process”.
Thanks,
Camm
Camm,
So sorry to hear you are experiencing these negative symptoms. I did not have these problems, but I do have blurry vision. I am doing much better after 6 months on minocycline. I did have dizzy spell during the first month. My mood was really bad. I had a lot of “can not described” emotions —- I mean—-they were not depression, but it was like a depressed and negative emotions. Using John McDonald's words, Neuro-Herxing. I also had a huge brain fog, I could hardly read a research article. All these statistic numbers were just bouncing around in front of my eyes. I still have this problem, but I am getting a lot better.
I noticed you are taking two other medicine. Do you take them all together? Could this be medication interaction effect?
Also, I found I need to drink a lot of water.
JB
Hi Camm,
You might find this article on the main website to be of some reassurance:
Cognitive Dysfunction in Rheumatic Disease “Brain Fog” and AP (antibiotic protocol)
https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/189.html
The brain fog component of rheumatic disease is very common and sometimes worsens for a time when beginning AP (herx) or at intervals during our road back. You're right, it's very disorienting. I had one occasion, driving my daughter back from the mall, where I was going around a corner at a light and had to pull over as I felt so “disjointed.” It may also have been a bit of vertigo. For a time, it felt like I'd lost my short-term memory altogether. I couldn't remember from one minute to the next what anyone had said to me.
You're on the Harvard Protocol (100mg twice a day), so it may be a good idea to ask your doc if you can lower your dose to get you through this patch, if it becomes too disabling and doesn't pass in a week or so. With AP, it often works counter-intuitively in many cases, where less is more. This isn't necessarily the case for those with scleroderma, but for other rheumatic diseases, it does seem to be helpful to adjust the dose down, either to once a day or to a pulsed dose.
Hope you feel better soon, Cam.
Peace, Maz
JB- It certainly might be – though of course I can't find anything about possible combos of any of these drugs (such trendsetters we are). My gut tells me it's the Nystatin – things definitely got a lot worse brain-fog-wise when i go to the full dosing level on that. Think I'll talk to my doc about holding the Nystatin down to a lower dose for a few days and see what I notice.
Thanks- having others to help me “think” during this time is a huge help.
CAMM
Hi Maz- thanks, I didn't ever think of brain fog as more than memory/concentration problems. The whole “feeling disconnected” think didn't register with me as brain fog — I actually feel better thinking about it that way (always nice to think there isn't some other nebulous thing wrong with you). On the plus side I'm getting more exercise since the moment I get to the top of the stairs I have no idea what I went up for, so I go back down only to remember briefly and start the cycle all over again!
CAMM
Hi Camm,
Yea, I know that feeling of starting out on a mission and forgetting I had a mission in mid-stream! Prior to my disease onset, I had an excellent memory…and could multi-task like it was second nature. Honestly, I was so frightened I was getting alzheimer's at one point, it was so bad. This does get better, though, so hang in there.
You have a very good point, too, about the Nystatin and possible candida die-off. This is one of the symptoms that has been reported by others here on the board when they are on anti-candida meds. JB is right…keep doing what you can to clear the toxins from die-off….drink plenty, keep your bowels moving regularly, do the lemon & olive oil detox drink daily and you could also give the epsom salts/peroxide baths a go and see if they help….as well as eating as fresh as poss.
Hope this passes for you soon.
Peace, Maz
[user=27]Maz[/user] wrote: Honestly, I was so frightened I was getting alzheimer's at one point, it was so bad.
Maz–This is exactly how I felt in the early 90's along with many other symptoms. Knowing what I know now, I'm sure I got my first bout with Lyme back then. It was never diagnosed, but when I took Cipro for another infection, the rest cleared up (or went into hiding–either way I felt good).
Trudi
Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
Hi Trudi,
Funny you should mention this. I was just having a chat with another Road Backer on the phone and mentioned that I'd had a tick bite about 10 years ago (the one in the car when my daughter freaked out and I pinged it out the window! :roll-laugh:)…it was after that point that I started getting strange muscle fasciculations, chronic pms, migraine headaches and chronic fatigue. Pretty sure my immune system was just keeping it at bay all those years until I got reinfected 2 years ago and it just exploded into full blown RA. That was when the brain fog came on with avengence, though.
I guess we're just tick magnets…tasty blood or something! :sick:
Peace, Maz
Maz- I thought I had read everything but somehow I missed the lemon/olive oil detoc deal. Are there recommended amounts for the peroxide/epsom salts bath? I saw the reference to using it but it didn't say anything about how much of each. Does it matter?
Then again, maybe I read it and just forgot it!
Thanks,
Camm
[user=27]Maz[/user] wrote:
…it was after that point that I started getting strange muscle fasciculations, chronic pms, migraine headaches and chronic fatigue. Pretty sure my immune system was just keeping it at bay all those years until I got reinfected 2 years ago and it just exploded into full blown RA. That was when the brain fog came on with avengence, though.
This is such a chuckle. I called those symptoms being in perimenopause :roll-laugh:.
You are correct, though, they most definitely could have been a manifestation of the underlying Lyme.
Trudi
Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
Hi Camm,
If you go to http://rheumatic.org/faq.htm and scroll down to FAQ #6, you will find the basic recipe for the detox drink and the epsom/peroxide baths.
They give the basic recipe for the detox drink, but I usually blend my lemon (washed and with skin on, cutting off green ink stamp and sticker) with 1 1/2 cups water, some ice and a hunk of ginger (for anti-inflammatory properties, with skin on and washed) and a couple tablespoons of extra virgin, first cold pressed olive oil. Then, just strain it with a metal strainer and add a few ice cubes. Some people like to add stevia sweetner or honey, but I kind of like it tart-tasting. It's not a bad drink, at all, but you need to blend with the skin on, because the pectin in the skin helps to emulsify the oil…otherwise it will just float to the top after you blend it. It's actually a gentle version of a full liver flush, so what it's doing (when taken daily an hour or so before bed) is to help the liver to contract while sleeping (the oil) and when the liver does much of its dumping at night. Also the lemon component acts as an anti-oxidant and helps to alkalize the digestive tract.
Hope these help a bit for you!
Peace, Maz
Camm, just clicked on the link I gave you to see if it was working and saw that they have made a mistake in the FAQs at rheumatic.org, having two #6s! FYI, it is the second #6 with the FAQ heading:
6. EXPLAIN THE JARISCH HERXHEIMER REACTION.Just in case, here is the relevant info on the epsoms/peroxide baths:
“Oxidative therapy may be useful in reducing these symptoms. Garth Nicholson, M.D., director of The Institute for Molecular Medicine in Huntington Beach, California recommends peroxide baths (four 16 oz. bottles of 3% hydrogen peroxide in 20 inch bath or Jacuzzi, with 2 cups of Epsom salt. Patients soak in hot water plus the Epsom salt for five minutes until pores are open, then add the peroxide solution. This should be repeated three times a week at bedtime. No vitamins should be taken 8 hours before bath. The peroxide can also be directly applied to the skin after a hot shower/tub. The peroxide should be left on for 5 minutes and then washed off.”
Peace, Maz
Thanks Maz. I really appreciate the help. (heaven knows we need all the help we can get while we're herxing! My mom has been laughing because when she asks me how I am I always say “You know how I thought I had bottomed out? I was wrong!” Or my new favorite non-answer answer – “I'm right on schedule” (since we all know it gets worse before it gets better).
Okay, all, tell me I'm not a lost cause (I know I'm not, I'm just seeking assurance!) I admit that in the midst of this seemingly bottomless pit of herxking (okay, it's only been bad for two weeks, but as you know when you've felt crummy for most of the last 7 years and you're confident you're actually on the path to getting better, two weeks seems like a long time)….but I digress (darn brain fog!)…….anyway – I seem to have my “zest”. I still have it with my daughter (my amazing, fun, joy-filled 3 year old that I was blessed to adopt form Russia when she was 1 – in one of my remissions), because kids are so wonderful at keeping us “in the moment”, aren't they? And, really, who can resist that giggle? But other than that I am “flat” – my house is a disaster (because any energy I have goes to my daughter), I'd be embarrassed to have anyone even peek in the window much less walk in the door, and it depresses me just looking at it but I'm too tired to do much about it; I've been out of work since May (had to borrow a chunk of money from my 401k just to pay the bills) and they're threatening to boot me if I'm not back soon (and as a single mom, that's a huge worry); I haven't even had the energy to get a shower in 3 days (yes, I know I'd feel better but…….). It doesn't feel like depression as much as “I give up” and “I'll deal with it all when I feel better.” It's the vicious circle- I feel crummy because I look crummy (and I desperately need a haircut- yes, it's a girl thing, but you all know how a good haircut makes you feel better). And nobody knows how bad it is or how awful I feel. I reach in the bedside table every morning and take out that smile and paste it on when I drop her off at daycare or go to the grocery store (thank heavens for the handicapped parking permit that I fought getting tooth and nail until i admitted I needed it).
Yes, I am definitely whining. I'm just taking advantage of that fact that you guys know how I feel (and seeking reassurance that your zest for life really does come back. I used to be the mountain-climbing, hang-gliding, camping, hiking chick- now I'm way too familiar with daytime TV. I often worry if it's lethargy breeding on itself or if it's really the disease – and that is a sure mental path to nowhere! You know – “am I really that tired or do I just THINK I'm that tired?”)
Thanks. Appreciate the ears
-Camm
Hi Camm,
No worries about the whining…you're right….we all understand and know what you're describing. Does a soul good to get it out to others who have a clue what you're going through. 😉
Your little girl sounds like a real treasure!
Peace, Maz
Hi Camm,
Your description of brain fog was spot-on. I loved the description, but hated the memories it brought back. It?s really hard to explain it to someone who hasn?t experienced it. My guess is you really are that tired. I found it extremely difficult to function when I had ?the fog?, no energy, no brain power, no will to do anything.
I found some interesting ideas on the CPNhelp site that I haven?t ever seen mentioned here. Activated charcoal capsules and vitamin C flushes come to mind. Search the site for ?moppers?. I can?t say I?ve tried any these, probably because I couldn?t remember them long enough to actually try them.
Also, for energy, somebody recommended sublingual b-12 for a boost. I have tried this and it seems to work.
Hang in there. You?ve got a lot of things on your plate right now. Take care of yourself and your daughter. Things like house cleaning will wait until you feel better.
Todd
The topic ‘ 4 weeks in – weird things going on’ is closed to new replies.