Thanks for asking. Nothing's changed. I still don't know how to interpret what's going on, if it is a Lyme herx, a Lyme relapse an instant return of Babesia after 8 monts of Mepron/Art. or what.

I feel out of breath quickly, with 'hot flashes' when I get up and do something, like after brushing teeth, showering, or making breakfast, etc. Have to lie down after a tiny bit of activity, then when I lie down it is that profound fatigue that makes you almost want to puke. I've had those sx before, just not for a really long time (pre-treatment, more than 8 months at least).

I figured I'd try to ride it out a couple of more days before I contact my LLMD, as it might pass (I hope so) and then I'd feel like a fool, esp. as I'm due to see him in 3 weeks. (it better get better by then or it's going to be hard to make the 11 hour journey just to get to New York).

The only thing is that with the out of breath feeling and a bit of dry cough and my lungs feeling 'hot', I wasn't sure if those were ONLY babesia symptoms and if so, why did they return only within a few days of stopping 8 months of Mepron/Artemesia. Do you know if those symptoms are EXCLUSIVE to Babesia? I have checked symptoms lists and they seems to cross over to me.

I wouldn't want to jump back on Mepron in a hurry if it wasn't absolutely crucial (the expense, I can't afford to).

So, it FEELS like a total relapse affecting every part........dull all over headache which goes down neck and spine and feels toxic, fatigue, nearly 24/7 chills, 'hot lungs' on/off, low grade temp, upset stomach, fleeting nausea, cough on/off and flushed face on/off....

Anyway, enough of ME - how are YOU doing?

DLL

I am trying to convince myself it is just a Lyme herx and nothing to do with babs or finishing Mepron right at the time this started, or having just got over the flu also.

it's confusing when it all seems to happen at once and you can't unpick it....won't ask my GP for help because he's trying his best to NOT help me at all.

Hi. First of all, that's incredible that you travel to New York for treatment. Are you a patient of Dr. B?

Can't remember, since the search engine is off at the moment, if you are dealing with other issues as well, such as Lyme. What you are describing sounds a bit Lymish.

But as someone who has just spent the past two months finding a new doctor in the area of America you describe, I must say, be cautious. There's a lot going on here.

What I would suggest to anyone who had time or money to go through a herx, is to find out what the strongest treatments are for all these bugs, and then just hit them as hard as you can. I have been on what turned out to be incomplete or lowgrade treatments for many years, and now have almost completely resistant forms of everything. I knew it on some level the whole time, but was either too scared or too worried about being "nice" to advocate on my own behalf.

And a lot of Lymenet posts say 7-9 months is the minimum for babs. Regardless of the reasons that my LLMD gave me lowgrade abx, the bottom line is, if I'd done my advance research and asked for the right treatment right away, it would have been hard for him to say no.

If an LLMD resists giving you a treatment, after agreeing to do the Dr. B protocol with you, you are not being ungrateful or silly if you shop around. The doctor I'm seeing now is so underground, I don't think he's ever been mentioned on this board. But he's proof that there are always more choices than you think.

I've heard its artemisinin that works, not artemisia, but there's disagreement on this. And a lot of people are saying ketek helps with babs treatment. I'm on it now, and am not experiencing babs symptoms.

I am a patient of Dr B and am happy with that, I have been with him since the beginning so I have no experience (bad or good) of any other LLMDS, thankfully.

My GP, of course, is not in NY, but local to where I live. We have a national health system and where I live there are only 3 GP's - I've been through the other 2 and 'fired' them. I have no choice but to try to make the best of the third. But, I am sure he does not read Dr Bs correspondence to him or any of the literature I have given him.

It is another battle I don't have the strength to fight right now - fighting for my right to treatment on our national health service, because, like everyone else I am paying taxes that are supposed to cover that service. (oh unless you have chronic Lyme of course, then it doesnt!). The service is great for broken legs, emergency medicine, but if you are chronically ill it's not so great. It's also good if you are a heroin addictg because you can get free methadone! But, if you have Lyme, forget it!

DLL

I dunno what's specifically babs. The following are the sx I DON'T have anymore, so I reckon they were babs sx -- but I've been on the bicillin for quite a while now, and I assume the LD is pretty much under control, too; ditto the bart (which I hope is gone, not just under control).

Anyway -- my vanished (so far), assumed-to-be-babs sx:

dizzyness

breathlessness and nausea when exercising

sudden, intense, stinky sweats

a very specific kind of headache -- the hot-poker-in-the-eye one

that "vibrating" feeling -- dunno about this one. It came and went a lot, but I haven't had it at all since babs tx.

I still get the tremendous fatigue (the lie-down-now-or-fall-down kind) and anxiety, (especially since I started on the tinidazole) although it's much less frequent (1-3 days a week; not always together). The anxiety is more manageable than it was. When I'm feeling OK, I feel pretty good and can exercise for an hour (gently) and still make dinner etc.

Since you're in the UK -- if you think you still are fighting babs, do you think you can get your doc to write a Riamet rx? Dunno if it's better, but it takes less time to get to the end of the tx.

The hubby was on mepron 10 mo, btw, and felt symptomatic (with babs) until half way through the 8th month. After that, it seemed to be mostly mepron problems -- diarrhea and weakness. It took him a couple of weeks to feel better after quitting the Mepron -- that stuff can be pretty hard on you. But it's early days -- just 3 mo after quitting babs tx -- so I'm not going to say he's over it yet.

He still didn't feel that terrific when he started on Bart tx, and that was fairly horrid for the first 6 weeks (Levaquin). After he finished Levaquin for bart (60 days), and the first 4 weeks of Ketek for bart and everything else, he started feeling remarkably better.

Best of luck to you, and I hope your NY journey is manageable. You might want to check into getting bottled oxygen for the flight -- I've read several accounts by people with LD and chronic fatigue who said it made a big difference for them.

Also BTW, I have had several friends who've had the flu, and who have been absolutely miserable with weakness and dizzyness for up to a month after "getting over" it. It IS difficult to unpick the muddle.

It's worse again today, weak and out of breath and almost nauseated just after showring and dressing. "Weak stomach" like I don't want to eat. Flushed, low-grade temp and chills are back, didn't leave for long.

I am on my second month of Mepron/zith combo and am going throu the same thing.What we really need is to find a cardialagist that knows what lyme and co-infections do to our hearts!!

I believe the damage is done to my heart!! I dont think my LLMD is going to be able to fix it with meds.I tested positive for Babs two years ago and my gp never treated me for it!!!

5 heart attacks later,I am still haveing big problems. It seams too me when I was put in the hospital and given nitro and heparin through I.V. it would thin my blood down and the chest pains would go away.

I "think" my blood getts too thick with die off and my heart is too tired to pump my blood corectly,cant get a Doctor to admit it!!

I really wouldnt wait too long to see a Doctor of any sort!! Ask them to test your blood to see if it is too thick or too thin,Tell them you are having chest pains!!! I really think it could be very dangerus to not do anything!!

Alot of people around my area die from the heart problems with the lyme disease.Call your LLMD and ask what tests your regular doctor can do to check for problems!!!

Please see a Doctor!!! You dont know what damage has been done to your heart from the lyme and babs!!!I am 40,and I have the same heart troubles you have!!!Be carefull,and you shouldnt take a shower when no one is home!!!!

Are you referring to me? Maybe you've misunderstood my post, I am not convinced that I have any particular heart problems.

It is an old symptom, and I thought it was a babs sx, but not so sure now, might be a Lyme symptom also as I've just finished Mepron and then - here are the 'hot lungs' again, virtually instantly. It must be a coincidence. I am really trying to think BAD HERX - my 'initiation' into bad herxing 8 months into treatment I guess. It comes in waves of bad or worse right now, new feature, bed feels like it's moving and waves of either I'm about to die, faint, throw up,etc....then it gets better a while again.

Anyway, I've had pneumonia before, and it doesn't feel like that.

In fact, I'd LOVE to know if ANYONE has ever had what they can only describe as 'hot lungs' before? I know it doesn't make much sense and many doctors have looked at me like I'm crazy when i said that. And,I haven't heard any other Lyme or Babs patients ever mention it. It is kind of similar to opening a hot oven and taking a whiff and getting a slightly scorched feeling in lungs. (not assuming you've ever done that, but I have, and even curleed my eyelashes that way).

Just wanted to wish you the best as you struggle with your health and the "system".

I hope that everything stabilizes nicely for you soon.

I wasnt out side to get frost bittin lungs!!! My LLMD said it is because my blood was getting thick and the heart has a hard time getting Oxigen to the lungs,and the lineing of the lungs get thick.

That sounds awful.

I think we have something slightly different tough. Iv'e had frostbite more than once and for me it is not similar and I don't have chest/lung pain, just a warm feeling in my lungs on and off.