Still feeling horrible...worrying about MS again..need support

[carrie235]

Hi All,
I posted last week about how awful I was feeling.    Today is Sunday, and I'm still feeling horrible.  I even went into the MS forum again because I'm starting to worry that maybe I'm having what MS'ers call a flair.  Mind you, I have a positive test for Lyme.  Also, I'm experiencing some new symptoms which I've not had before.  One of them is that I feel like I have something dripping on my right leg below my knee.  I keep looking down, but nothing there.  

Also, the fatigue I have is horrible, I'm super woozy and dizzy, I've been getting headaches.  I changed meds last Monday and I'm sure I'm just herxing, but I can't help the nagging feeling that this still might be MS.  I haven't felt this way in a long time and in-fact, I'm feeling worse now than I EVER have with Lyme.  The only thing different now, is that I'm not having all the tinlging/pulsating feelings but the dizziness and fatigue is horrible!!!!  I seriously don't feel safe driving.

I guess I'm just looking for some reassurance that this is still lyme and that what I'm feeling is in-fact herxing and not an MS flair.  Sorry to be so needy.....my worries are just starting to overtake me again.

Also, this morning when I awoke I had major sound sensivity and my hands were trembling...ugh

Thanks everyone.

[Ness78]

Hi Carrie,

I only started having the cognitive stuff after I started the meds and it's really bad when I am herxing. Wow, the cognitive stuff feels very disabling.  I guess because it's your window to the world.  I would rather the numb foot.

I find it hard to pop a pill in my mouth that makes me feel bad...but it's the no pain no gain thing with lyme.

I wish my life was set up so that when I felt really bad I could call a time-out and my kids and my job would just freeze until I was ready to jump back in.  I wouldn't find it so bad if I could just lie there and be sick. But anyways, one small day at a time.  I also find laughing at my new-found stupidity makes me feel better. So far all of my scariest symptoms have come and gone.....so when new stuff comes...I depend on the fact that it is temporary.

Are you on supplements to counter balance the meds?

[carrie235]

Oh..something else I'm now having is this ringing in my right ear!  Man, do I hate that!!!  

I feel like I'm on so many drugs.  I worry about my liver.  My LLMD checks my liver each time and this last time, my enzymes were normal but how much can a liver take?!

My foggy head....ugh

[carrie235]

Hi Ness:

Thanks for this article.  I've seen it before.  This time I printed it out so that when I get worried, I can glance at it.  I'm still not feeling very good.  My biggest thing is the dizziness.  It's weird because I can just be sitting there and tilt my head to the left, and then it's like the room is spinning.  I'm still very fatigued as well.

And the brain fog...HORRIBLE!!!!  I can't remember what happened two hours ago.   I will be talking and mid sentence completely forget what I was talking about.  

One thing I'm having a hard time doing is taking my meds at the same time every day.  I was having a very difficult time sleeping for a few weeks (seems to be getting a little better) and wasn't able to get up early every day.  I have to take my Rifampin one hour before or 2-3 hours after a meal on an empty stomach.  So, I've been playing with the times and trying to get on a schedule but it's been very difficult.  This I need to figure out because I know it's very important to take the meds at the same time every day.

Regarding injuries, you won't believe that recently while my husband and I were in Jamaica, I feel and broke THREE of my front top teeth.  Oey Vey....This was a pretty significant injury to my body and one that I'm still dealing with.  I hope to get over this hurdle very soon.  

It always seems like it's something.....

[Ness78]

Yes, I don't want to misquote Quix (She will never know how helpful she was to me..just from reading her posts to other people and her information articles) .I think that she meant places all over the body.  Actually, it may have been you that mentioned the systemic thing and she might have agreed.  I think systemic can also mean systemwide things lie fatigue, and cog fog.  Anyways, I remember the crux of it being that it was happening all over the place (MANY different places) and that is not typical of MS. My MRI has three lesions, and I think Wonko's is like 7-8, if I were to count my symptoms I would have far more damage to my CNS.  

How are you feeling? Check this out.... Great long description of herxing and symptom patterns.  

www(dot)angelfire(dot)com/me2/StarShar/Herx1(dot)html

[JackieCalifornia]

www [dot] chronic lyme disease [dot] com / llmd-referrals

If you put dots in where indicated and take out all the spaces and where I've inserted [dot], you might find a doc near you.

[brandycolwell]

i dont know what i have - let me say that first off.

  i also am always tired, feel weak.. trembling hands ( and legs) but the thing that caught me about your post was the dripping feeling down your leg!! that happens to me- its so real, you look down to see whats on you. i havent been tested for lyme as my dr. says 'THERE'S NO REASON" crazy person with a phd.

[ally123582]

I've been on both of those drugs.  I did Zithro in the very beginning and just recently stopped Rifampin.  I did Rifampin and Omnicef together.  I found Zithro to be extremely helpful in the beginning.  I've read that drug gets deep into the tissues and the brain which is good.  Only problem with Zithro is that its pretty expensive and I was always afraid my insurance would look into why I was on it for months in a row.  Good luck!

[JackieCalifornia]

Glad you're feeling well enough to go to work -- that's progress!

I was on Zithromax and something else, had little if any side effects, but have never taken Rifampin.  But truly, everyone is different.  (Dang bugs!!)

[carrie235]

Ness,

when you say "too systemic" to be MS, what do you mean by that?  I looked up systemic and it says the whole organism.  I'm taking this to mean that Quix thought that I had too many symptoms all over my body to be MS because I had things going on everywhere.  Is that correct.  I never did really understand what she meant on that.

Thank you.

[carrie235]

Hi Everyone and thank you SO MUCH for your support.  It's Monday, still feeling bad, but hanging in there and getting ready to go to work.  I've been having some trouble staying asleep and keep waking up at 4am for hours.  Then, I finally fall into a good slumber around 530 or 6am and can't get out of bed until 845.  

Ally:  My pulsating feeling is generally in my let leg.  It feels like I can feel my heartbeat up and down my entire leg.  The pulsating feeling seems to go along with my heartbeat.  That feeling I had day in and day out before I started treatment.  I thankfully very rarely get that anymore.

Ness:  Yes, that probably was me on the MS forum.  I spent almost a year on that forum before being DX with lyme.  and, I do believe that Quix did make the comment you mentioned.  Yes, the ABX and the increase in symptoms are going hand in hand, but when you feel so crappy, I guess all these "other" worries start taking over your mind.

Jackie:  Thank you.  No worries, I would not stop these meds without first consulting with the doc.  If what I'm feeling is a herx and I'm sure it is, I've just got to hang in there.  If the dizziness persists after another week, I think I will give him a call.

By the way, I've been misspelling my meds.  I'm on 300 ms of Rifampin 2x per day and 250 mg of Zithromax 2x per day.

Has anyone else taken these meds and did they cause you any problems?

Thanks again everyone.  

[wonko]

I agree with how Ness78 puts it:  If your symptoms were arising from MS, given how severe your symptoms are, you would have to have obvious damage to the central nervous system.  

I also went through the same line of thinking about my case, and (years ago) Quix also discussed my case with me via MedHelp PM after I'd been on the MS forum for a year or so.  

One can have a healthy skepticism about Lyme, especially its chronic form, but still recognize when symptoms are too systemic/transient to likely be caused by damage to the CNS.  

While I go through "flares" (periods or worsening) and "remissions," they don't really fit into the rules for MS flares, where they must be sufficiently separated in time etc.

And as JackieCalifornia points out, responding to antibiotic treatment is another reassurance!  (Though some people may note that some abx have anti-inflammatory properties, and hence may offer some relief to systems not of infectious origin.)

The popular perception of Lyme as "hard to get, easy to cure" I think can also play into our worries of other illnesses.  With something like MS, the general public and all mainstream docs recognize that as a life-altering dx.  However, few people from the general public and very few medical doctors recognize that Lyme can be the "long haul" (as put nicely by Ness).  While I'm relieved that I don't have MS, Nov. will mark 3 years of treatment for me and I'm still not recovered.  This illnesses has been the greatest challenge that I have faced in my life, and part of that is due to the total lack of compassion that comes along with this particular diagnosis...

Hope you feel better soon.

[Ness78]

I also relapse into to thinking it's MS.  The mind can go to all sorts of places when  you are feeling depressed. I think I remember you from the MS forum and I remember you realizing it was lyme. (Maybe I am wrong) I was still in limbo at the time... anyways if it was you, Quix told you that your symptoms seemed too systemic to be MS. I know it's not a perfect science, but for me....given the amount of fluctuating symptoms that I have I would have a brain and spinal cord full of lesions. I also think it is lining up with a new abx pretty nicely.  I have been in a down and out herx too...Jackie is right - it is counter-intuitive to feel bad in an effort to feel better - so I am with you.  Lyme isn't the easy cure I thought it was...it is a longer haul than most people percieve...especially since it's so tricky to get help. I agree...'this too will pass' and you will have more energy to and look forward with more optimism.  Hang in there until then.

[ally123582]

Sorry to hear you are feeling crappy.  In the first few months of having Lyme I had a warm dripping sensation go under my foot.  It was on an off for a couple months and then went away and hasn't been back.  Sounds similar to what you are experiencing.  I also get a woozy dizzy feeling at times.  Like you, I have some great periods and go back to feeling at my worst again.  It's sooo frustrating.  Why did your doctor make a medication change?  Any specific reason?  At my last LLMD appt he took me off all Abx.  So I've been on no meds for almost a month after taking them for a full year.  I still have symptoms, but I actually don't feel much worse not on them than I did taking them.  I will see how it goes.  You mentioned in your post that you get pulsing type sensations.  Can you tell me more about that?  I've been getting this sensation in my hands lately that's driving me crazy.  I'm not sure how to describe it other than a pulsing/impulse-like feeling that lasts for 1-2 seconds and then stops.  This sensation is mostly in my hands.  Does this sound like yours?
One more thing I just thoughts of...I've received some e-mails about a new borrelia culture test that is supposed to be more accurate than previous tests.  I believe it's developed by Dr. B out of Advanced Laboratories in Philadelphia.  Maybe your LLMD would know about it and test you again just for piece of mind.  

[JackieCalifornia]

Carrie

It's the bugz playing tricks with you.

Do I know that you don't have MS?  No, but since you are responding to treatment for Lyme, on top of having a test-verified Lyme diagnosis, I would suggest that a conclusion that you have Lyme would, as a friend of mine used to say, be the way to bet.

'Responding to treatment' is a nice way of saying you are feeling like h*ll, and I don't doubt that you are.

I remember well feeling unsure of myself, my diagnosis, my doc, and the universe at large when I was having side effects of treatment ... and it will pass.  Feeling worse while trying to get better is counter-intuitive, on top of the brain and emo effects of Lyme.  But that's the way the bugz play.

You hang in there, keep a diary of how you feel and look back at it when you are having rough days.  I *still* keep a diary, just because it shows me how normal I am compared to the Lyme days of misery.  I found Lyme to be exceptionally good at undermining my emotional state, and I believe from experience and from reading that it is simply a side effect of the infection.

This too will pass.  Hang in.  Or, if you can't tolerate the side effects, notify the doc's office and see if they want you to do something different with the meds ... but don't freelance on that:  call the doc and let the doc decide.

You can get through this, and you will.