Herx or Something Else?

Hello friends,

I tested positive via ELISA and Western Blot in august of 09. My main symptoms were head pressure, neck burning and pain, difficulty with speech and slow thinking, blurry vision, dizziness, and very very very very sleepy. I was treated with Doxycycline combined with Bactrim for almost 6 months. Foolishly, i was feeling better and was not tolerating the yeast problems associated with antibiotics so i came off them and was feeling fine and normal for 2 months. After that, i started feeling dizzy, then that passed and i got severe migraines for a week, then that passed and now im left with SEVERE air hunger, chest pains, dizziness, headaches, and the horrible pressure in my head. All these symptoms come and go as they please throughout the day.

I went back to my LLMD in october and he put me back on a low dose of Doxy to start, to prevent a violent herx. Im entering my 4th week of treatment, and despite feeling no better or worse the past 3 weeks, i am now being plagued with headaches, hot flashes, and a very strange feeling i cant quite pinpoint. Kind of like the fight or flight response lingering and waiting to freak out.

I just wanted to ask, is it normal to feel nothing until the 4th week? How do you know if its a herx or if its something else making you feel like horrible hell?

And, has anyone experienced it the same time everyday? It seems to peak around 5-6PM every evening and then taper off towards bedtime.

Any tips, comments, suggestions, insight would be much appreciated. Thank you so much. i have been feeling truly hopeless the past 2 months. i moved back home, left my job, and lost my social life. I feel like im much too young (24) to be feeling this way, and am desperate to get my life back.

Yes, I second JoAnn's opinion. It does sound like co-infections. Until they are addressed, you won't get to feeling better.

Thank you all for your responses.

I did test positive for Ehlrich last year, but i am not sure if i was ever tested for the co infections. I see my LLMD again in December so i will definitely address this with him.

I do not experience fevers or sweats, and my symptoms seem to change as often as hours. One of the worst is the pressure/squeezing/nasty feeling i get in the lower back part of my head, and the loud ringing in my ears.


I just want these bugs out of me, treatment last year was so easy, i herxed for 2 weeks then i felt relatively fine for months. Im just worried it could be something other than Lyme/ co infections although i have been to several specialists and the hospital twice and nobody can find anything wrong. But im sure you all are aware of how scary it is being in early Lyme and having Drs say "chronic lyme doesnt exist, you dont have that. You have some other problem"

It seems to me, as a 24 year old, it is highly unlikely i have a problem with my brain, my lungs, my heart, AND my gastro system... vs a disease i tested positive for that is systematic. Why are doctors so reluctant to accept the idea of Lyme?

On a side note, when talking to my neurologist about it, she said "Lyme is treated with Doxy only, nothing else, and for 14 days. Chronic Lyme doesnt exist, there is no such thing" And i even asked her, Ms, if i had tested positive, and suffered, and was treated, and got better.... and now im off treatment, and the same symptoms come back, why is it not lyme? Her response was "Its just a coincidence, maybe you should see a psychiatrist"

Thanks, Joann, Achievingrace, and Mik

Be prepared for a long journey Toboein, although I'm no LLMD I would certainly do everything you can to have your doubting Dr's prove to you that you're no Lymie. The sysmtoms you describe, quickly changing, neck pain, unexplained elusive problems that no "expert" can find etc etc etc plus the fact that you have already been treated for it?? If the Dr's you have now (the doubters) treated you for LD you would have received the mandatory couple of weeks of Doxy and told that you were cured. Inadequate treatment in the initial stages is a huge problem, this is exactly what nearly finished me off. I was treated for 3 months with Doxy at 100mg twice a day on discovering the EM rash, then 8 months later - slowly very slowly my body, mind and soul fell to bits.......but of course I didn't have LD as I'd been treated (that's what the Dr's said). To cut a long story short the Lyme had returned with even greater intention.

Please do not take this disease lightly my friend, as I'm sure you don't, but be pro-active and get out there to help yourself. Learn whatever you can about LD, you will have to be the educater for the sheep like Dr's who have to follow their government written guidelines. As Nasalady said above the politics surrounding this disease is crazy.......be your own best advocate and learn as much as you can about every aspect of this very stubborn, very clever, very difficult, very hard to kill, very strange disease.....

Take care.

Mik.

Funny that my GP dropped me with exactly the same words LOL!! Don't be worried about over educating yourself, if you don't know anything about it how are you going to teach the Dr's anything? I can safely say that without my LLMD I would have probably done myself the worst kind of damage while all the regular GP's and Neuro's and Rhumies all scratch their butts while I was slowly self destructing.

As for ABX treatment be prepared for the long haul, they reckon that aggressive treatment should carry on for 4 months after the disapperance of symptoms. I've been on fairly heavy doses of them for about 15 months and apart from a few persistant symptoms I'm doing well - I haven't felt really horribly sick for over a month......great! Also with suppliments and detoxing I've had no problem with candida, I've had no GI problems either; it's just the Lyme that makes me sick. If you're worried about candida get some good probiotics these will help replace the guts bacteria, killed by the ABX, that helps to control yeast and fungal growth. Herx's are part of this I'm affraid but they will get easier and further between each episode (hopefully), mine have at least. They lasted for between 2 weeks and only a day, to start with in the first few weeks I was sick all the time - then they gave me some respite and were every 5 days - 3 months later they were 2/3 days at the end of every month, these went on for about 8 months - right now I'm still expecting one as I haven't had one for just over a month but my body feels much stronger and much more ready to do battle but I'm still hoping my LLMD will keep me on ABX for some time yet as the very last thing I want is a relapse.

Believe me my LLMD is my god at this point in my life......from being disbelieved and left to rot by "normal" MD's for 2 years I certainly would put my faith in the LLMD's advice.

Mik.

Toboein, just wanted to let you know that I experience something similar to what you experience daily around 5 pm. I sometimes start around 4 or 5, but almost always by 5. It is a sweeping, desperate depression, added to a painful, physical anxiety. I often arrive home feeling suicidal, altho I am not really. But that is how bad that it feels. This has been going on for over a year. It used to happen often sometime after I got home from work, but gradually it invaded me while still at work. I feel that a little of that edge is off now, altho I experience a lot of feelings of insanity that occur at various times, but esp around 5-5:30 pm. (re: I Posted bipolar questions)

I do not get real headaches, but recently I have felt a lot of pressure in my head which comes and goes. It has not been bad enough to mention, tho.

I, too, have Babs, w/ much air hunger, hot flashes and sweats. I'm now on Mepron and don't know if I am herxing or not yet improved. Sometimes this feels improved, but then all of a sudden I am back down. Today, for example, I had to call in sick because I could not face getting out of bed.

Even tho your doxy dose does not seem high enough, I think you should be tested for Babesia, considering a lot of your symptoms. I am not certain, but I seem to believe that Babs is not as elusive in tests as is Lyme. At least not in my case. And in my opinion, if you have a Babesia infection, chances are that your Lyme infection is still active. Well, actually, it is obvious, since you tested positive for Lyme and your symptoms have returned. You will find story after story like yours -- ie; the returning Lyme.

My experience was similar to yours -- I took very high doses of AMox for 2 months and experienced a lot of relief when I was done. It took several months for all the symptoms to return.

The problem with LD is that although us Lymies have similar symptoms we never suffer the same set of symptoms. If you have the flu you have a specific set of symptoms which effects everyone the same and is easily diagnosed. You have probably experienced the migrating nerve pain (from one hour to the next) or the blurred vision that is there one minute and gone the next, I suffered lots of mental (?) psychological problems and had bouts of tearfulness and crying that would literally come over me like a wave, wash me around for an hour and then pass as quickly as it came.....all for no reason at all. LD make you so very sad......anxiety, depression, anger, self pity and a host of other feelings. I remember once being so anxious I thought my heart was about to give up, to me it sounded like a humming birds, within 5 secs it turned into apathy and I couldn't careless if my heart had have given up. Whats really scary though is that these feelings at the time of my illness were perfectly normal to me, I didn't realise that LD could do things like that to you, when you have problems in your head you don't always realise that they are there, so right now you need to try to remember that all your thoughts might not be all your own thinking.

Now then.....I had some arthritic problems but only in my thumbs and I had some tendon problems in my shoulders, yes and occassionally I had severe L/H rib cage pain that felt like some heavy weight was sat on me or I was getting a bear-hug only on the left hand side, every now and again I'd have sharp stabbing pain up my sternum, I had lots of malaise and fatigue and nerve pain but for me the worst symptoms were in my head. Now I know that lots of sufferers in the USA suffer lots of arthritis and joint pain, it's a prodominant sysmptom associated with Bb. But there are more strains that affect the sufferer in slightly different ways. I was bitten in southern Hungary - the major strain there is B Garanii - the prodominant problem with this psychological and neurological symptoms. But there is another that although causes the same type of symptoms as the other two, effects the skin, heart, gut and lungs more prodominantly than the first two, it is called Borrelia Afzelii. Google it and have a look, it could be possible.

Between ABX use and LD there's only one way go for me, I do not think I could cope with another bout of this disease. ABX any day! A lot of the very smart members on here use and talk about natural remedies that have worked to some degree for them, ask them what they did I'm sure they'd be more than happy to help if you really don't think you could manage lots of ABX.

No I never had a fever either when I herxed but sweating was a problem esp in bed over night, I'd wake up drenched. And yes you probably didn't do yourself any favours by ditching the ABX so soon during the winter, it's a long road friend.

Mik.

When you herx you're killing a bug or two, what's a few days sick when you're kicking a*s??? Be good, be patient and please remember that if you're both, eventually you have a good chance of ridding yourself of this horrible disease. Unfortunately some of the souls who post on here have tried everything for years and still suffer but I'll wish for you as I do for them.

Within a month of starting treatment most of my head pressure, bad thoughts had diminished which made life a little less complicated and it was easier to see things in prespective and to understand what had hapened to me, I became a person I didn't know or liked. Stick with it and do everything in your power to fight the little monsters. If you're happy with your LLMD and he make sense follow his word to the letter and don't worry too much about the herx's, hopefully they'll eventually ease.

Mik.

Pleasure..