I was diagnosed clinically by a LLMD in PA about three weeks ago. I am a 34 year old male living near Pittsburgh.
I am on Biaxin to start with...since doxy can cause such a sunburn and I work outside and will switch to doxy after a few weeks(not looking for analysis of whether I am on the right drug or not...trusting the doc on this one).
I am seronegative (ELISA and Western Blot series) and also negative for about everything else (co-infections, etc.
I started wondering if I really had the lyme. My symptoms for the last 10 months have been headache, brain fog (the worst symptom), migrating joint pain, floaters in eyes, testicular pain, and fatigue (with episodes of severe fatigue at times).
I also have had other issues like two ablations for SVT (had a PE as a result of one of these procedures), I have many pvcs (especially after eating) and heightened anxiety/depression.
I have seen over these 10 months so many doctors and specialists since I tend to be more proactive due having the heart trouble and the PE (which I had to beg the ER doc to do a CT scan before he sent me home).
Anyway, had so many tests and things ruled out...neurologist, endocrinologist, allergist, ENT, headache specialist, psychiatrist, etc... My PCP has been telling me I need to exercise and think more positively. He is clueless when it comes to this.
So here I am taking this abx, feeling a little better over the last few days and then wham! Today, after eating lunch I started to feel really dizzy/lightheaded/foggy...and extremely woozy and fatigued.
I feel it not only in my head but in my lower arms and lower legs. I have had many more PVCs and heart flutters and just feel awful. Is this herxing, or could this be something else?
I have been feeling this fatiged sensating for a little while (in the arms and legs) but not so bad like today. If anyone can offer me insight or let me know if they felt or feel the same thing please let me know.
I hope this bad herxing does not last too long. I understand it may come and go on a monthly cycle eventually...that is fine. I just hope this first one is the worst if that is indeed what is happening.
-------------------- "Sometimes trouble just follows a man" - Clint Eastwood as Josey Wales Posts: 40 | From Pittsburgh, Pennsylvania | Registered: Aug 2007
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Bill,
Welcome to the board. It can definitely be a herx. But that doesn't mean for sure it is a herx. The timing would definitely suggest a herx.
Whenever you get a new symptom, I believe it is worth calling your LLMD. Especially if it is something that is a significant change, like you describe. Just to make sure it's not something that should get checked out.
-Aniek
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
I know dizziness is a side effect of this abx, but it is a potential side effect of almost every medication. In a way I hope it is a herx just to confirm the diagnosis.
I am worried if the fatigue feeling in the arms and legs is normal as well? It is really severe and so is the dizziness. Worse than ever before. I am on 500mg bid (Clarithromycin). This is pretty rough. I know I made some type o's in that first post but my mind is toast right now.
-Bill
-------------------- "Sometimes trouble just follows a man" - Clint Eastwood as Josey Wales Posts: 40 | From Pittsburgh, Pennsylvania | Registered: Aug 2007
| IP: Logged |
posted
I've been on treatment for about 3 months and have experience 2 major herxes (one landed me in the hospital for a week). Similar to you, I was extremely lightheaded (actually did faint once) and had severe weakness in arms and legs. Honestly thought it would be a matter of days before I'd end up in a wheelchair it was so severe. Needless to say, I'm feeling much better lately and those things have subsided. Still feel a little weak and shakey but it is totally tolerable. Not sure if my story helps you....
Posts: 561 | From mass | Registered: Jul 2007
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Usually yes usually they get less and less intense!!!
I hope it is a Herx- sounds like it could be!!
Welcome*)!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
posted
Bill, You probably are taking a GOOD probiotic right????If not this is a must. Some of your symptoms also sound like systemic yeast, which is common when taking antibioltics. Just a thought. Blessings, Laura
-------------------- Outstare The Darkess Posts: 2 | From Marlboro, new York | Registered: Sep 2007
| IP: Logged |
I am taking Probiotics, but I may need to switch to a more potent one. My doc recommended one that I could not find. Do you (or anyone) have suggestions for probiotics that work good for you?
Thanks,
Bill
-------------------- "Sometimes trouble just follows a man" - Clint Eastwood as Josey Wales Posts: 40 | From Pittsburgh, Pennsylvania | Registered: Aug 2007
| IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
hi gismatrix
Welcome to the baord & I hope you can feel better soon. make sure to call your LLMD & let him/her know how you are feeling.
Re: Probitoics: What is the name of the one he reccomended? Maybe we can help find it for you?
I like theralac the best & enzymatic Thereapy pearls. These are supposed to survive the stomach acid. Any good multi strain probiotic is good too. Usually found in the fridgerated section of a healthfood store.
The kinds that stay on the shelf & don't need to be in fidge I have found to be pretty much worthless.
Re: A herx: a herx is when spirokete that casues lyme dies & breaks up into little pieces & creats toxins when it dies. This is what makes us feel sicker.
Not everyone herx's but most do. You usually feel much worse before you feel better ~ from the die off ~ herx effect. Meaning alot of your existing symptoms will become worse & sometimes you can get news ones too.
Thank God this is only temporary & isn't forever, but might feel that way sometimes.
Hang in there
It gets better over time Dana
none of the above is medical advise...just my 2 cents
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
Make sure you are drinking plenty of water. That will help your body detox.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Do you think your blood pressure could have fallen?
I think (may be wrong) that when eating, blood pools to your stomach/intestines, etc.
To aid in digestion.
Just a thought. Hope you reach your Doctor soon and are feeling better.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
gismatrix, As others noted, the timing does suggest a herx. Did your doctor give you any instructions about herxing, such as if it gets too bad back off for a time. Some doctors seem to recommend toughing it out but others caution against that. You might want to call and ask. PVCs are nothing to take lightly.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
| IP: Logged |
PVCs are something I have had for a while...as I said especially after eating. When my stomach is upset so is my heart. It is simply the autonomic nervous system at work.
This is exacerbated by the Lyme and/or the anxiety. To make matters even more exciting I am trying to taper off of topamax at the same time. Wish me luck.
I felt much better again this morning but once again by the time the afternoon rolled around I started to feel really dizzy, lightheaded, foggy brained, etc... today have really sore lower back.
I took my BP and it was normal. Having many pvcs, a few episodes of bigeminy. Again, this is something I have dealt with for some time, so it is either a benign condition that I developed or something made worse by Lyme.
Either way it is NO FUN! I have to try to keep working through all of this....yikes.
Bill
-------------------- "Sometimes trouble just follows a man" - Clint Eastwood as Josey Wales Posts: 40 | From Pittsburgh, Pennsylvania | Registered: Aug 2007
| IP: Logged |
You've mentioned your concern about the weakness in your legs and arms. This is one of my main symptoms as of right now.
I work on a farm and can be active. If I get tired (on the day that I am able to work) and I don't stop and rest, the feeling in my arms and legs will worsten until I can't hardly move. Very scary. When I push beyond my limit I have these episodes where my body shuts down and I have to stay still until the feeling subsides. This lasts about 15-20 minutes.
My Lymes symptoms have changed as time has progressed. I got Lyme's in Oct of 2006. It started with joint pain and fatigue. Then I was bed ridden in Feb and Mar. Once I got on the doxycycline I got better, out of the bed, but still not able to work.
In June, July, and Aug I started back part time, (teaching horseback riding lessons). I am fine to do it, as long as I don't do too much physical labor. Two to three hours is about the max.
What do your days consist of?
How long have you had Lyme's?
How sick have you gotten?
Take Care, Chris
Posts: 4 | From Kentucky | Registered: Jun 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
![[Smile]](smile.gif)
Printer-friendly view of this topic