What now?

I got my dose doubled @Girlie

And no, there's no other lyme specialists in Ireland that I'm aware of. He is an infectious disease doctor, but he specialises in lyme and have a very long history of treating it. He seems very knowledgeable about the topic and is very accommodating to me. From what I understand - he stays in touch with Dr. Burrascano about treatment and research, etc..

I should be good for now.

Girlie said...

SeanIRL said...
I got my dose doubled @Girlie

And no, there's no other lyme specialists in Ireland that I'm aware of. He is an infectious disease doctor, but he specialises in lyme and have a very long history of treating it. He seems very knowledgeable about the topic and is very accommodating to me. From what I understand - he stays in touch with Dr. Burrascano about treatment and research, etc..

I should be good for now.

So now you have the decision whether to take it once daily 600 mg or 300 mg twice daily.

My LLMD prescribes it 300 twice.

oh...are you taking the Rifampin on an empty stomach (if you can) That is the one I try to do that with.
I don't wait an hour before eating though. I just give it 1/2 hour...which probably isn't ideal.

Yes it's 300mg twice a day. The half life is pretty short IIRC.

I take my rifampin on an empty stomach just fine. I've never had problems with it. The only one that's tough on an empty stomach is the azithromycin. It really makes me feel queasy, so on days I take it - I try to eat about no more than 30 minutes afterwards.

SeanIRL said...
Also girlie - I see you took amoxy alongside cefuroxime. I'm about to start my amoxy. Did you tolerate it ok with your cefuroxime? Are you on the same doses as me? (Cef 1000mg twice a day, amoxy 1000mg 3 times a day).

Actually, I took Amoxy with biaxin...then discontinued amoxy and took biaxin with the Ceftin.

What i have in my sig line is only to 2015...ran out of room. (You know you've been on a lot of abx for a long time when....)


My dosage of amoxy was 1000 mg 3X daily (with Probenecid to keep it in the blood stream longer because of it's one hour half-life)

My dosage of Ceftin now is 1000 mg twice daily...can't remember what it was a few years ago when I first took it.

LymeSick - I think tetanus would be easily recognized - isn't it an infection that is rapid onset...and severe symptoms?

LymeSick 🌟 said...
Hey Girlie! Hope you're doing well today.

Yes that's what I thought too, but when I did some research earlier I found out there's different manifestations of tetanus, like check this one out:


/www.ncbi.nlm.nih.gov/pubmed/3773025

well, it seems to be rare? I can't find much on it.

Update: My twitching really has subsided these past few months. I would say it's like 80% better now, which is good. I still get mild spurts of it if I eat too much dairy, but it's nowhere near as bad as it was. No other symptoms have improved, but I put them off to just my regular M.E symptoms.

Girlie said...

SeanIRL said...
Update: My twitching really has subsided these past few months. I would say it's like 80% better now, which is good. I still get mild spurts of it if I eat too much dairy, but it's nowhere near as bad as it was. No other symptoms have improved, but I put them off to just my regular M.E symptoms.

Are you still on the Rifampin?

'regular M.E.' symptoms? What's that - CFS?

Don't you think that it's lyme and co's causing those otherwise unexplained symptoms?

Myalgic Encephalomylatis. (Otherwise known as CFS). And no, it wasn't from lyme. I know what triggered it.

And yes, I'm still on the rifampin. I'm on it twice a day now from once a day.

Raleighgirlie said...
I do have the Lyme gene defect though so that is why I react so strongly to everything.

What is the lyme gene defect?
I don't think I've heard of that.


Or are you talking about the MTHFR gene that can cause detoxing issues?

Girlie said...

Raleighgirlie said...
I do have the Lyme gene defect though so that is why I react so strongly to everything.

What is the lyme gene defect?
I don't think I've heard of that.


Or are you talking about the MTHFR gene that can cause detoxing issues?

It's the HLA-DR gene. I have the Lyme gene and one of the multi susceptible genes.

Girlie said...

WalkingbyFaith said...

Girlie said...

Raleighgirlie said...
I do have the Lyme gene defect though so that is why I react so strongly to everything.

What is the lyme gene defect?
I don't think I've heard of that.


Or are you talking about the MTHFR gene that can cause detoxing issues?

It's the HLA-DR gene. I have the Lyme gene and one of the multi susceptible genes.

Isn't the HLA-DR gene mold...not lyme?

There is a mold gene. There are multiple genes. IMO, all Lyme patients should be tested for this and know what genetic issues they have, especially if they have experienced any kind of treatment failures. My insurance paid for my test. It was done through Labcorp.

There is a chart for this. It is on this page: www.survivingmold.com/diagnosis/lab-tests

Raleighgirlie said...
Everything makes me herx but I will say that I herxed pretty badly from doxy, way more than amoxicillin, so curious to see if you have a reaction to the doxy. I do have the Lyme gene defect though so that is why I react so strongly to everything. It is very interesting that you don't herx from all of that at all though, that's a lot of abx. I would think you would have some sort of reaction.

I have twitching too and wondering if it's parasites. Have you treated parasites at all? I might try mimosa pudica.

Sorry for the belated reply.

No, I've never had any herx reactions. And I used lymecycline, which is essentially the same as doxycycline with a slightly shorter half-life. I feel no different on my ABX. Right now I'm on amoxicillin 1000mg (3 times a day), azithromycin and rifampin 2x a day. Perhaps my IDS will switch them up again next visit.

My twitching is probably 80% gone now. It comes every once in a while, but is much rarer - and less and less foods trigger it now. Before, even the slightest amount of dairy would drive it nuts - but now I can have cheese and yoghurts and it's ok for the most part.

The only two symptoms I really have left are fatigue (which is not related to lyme in my case), and the derealization which I suspect could be related to lyme or another TBD. I tried naloxone which proved very effective in a clinical trial, but it made no impact for me on my derealization.

I can deal with the fatigue, but the constant feeling of living in a dream is pretty unsettling. I know a lot of people with lyme have it.

Has anyone cured their derealization from ABX? It's the one symptom I just can't seem to make a dent on, and I've been on a myriad on antibiotics. I really want to get rid of it, because it makes me really upset if I focus on it.

Girlie said...
Sean - why don't you think the CFS is from lyme? It is one of the hallmark symptoms.

I know you said something else triggered it...but how do you really know it's not lyme?


I had a low level derealization for a month or two in the first year of my symptoms...along with anxiety and bouts of depression.

It actually went away prior to any treatment....go figure!

CFS isn't only caused by lyme. It has a multitude of triggers. I understand the mechanics of CFS probably more than most people on this forum. We will have a cure, I've no doubt about that. Trust me, it wasn't triggered by my lyme.

I tested for lyme twice years ago and it was negative. I only tested positive after developing the twitching/derealization, and that occurred after a dog bite. I'm still confused about that.

Honestly, I don't really have many lyme symptoms at all. No headaches, no joint pains, no light sensitivity. I can walk, jog, run, exercise fine (so long as I don't over-do it, then I get PEM) The only two that I attributed to the lyme and potentially other TBD's were the twitching and derealization.

I've had persistant derealization for years now. It never goes away, but is more noticeable around groups of people. I just hope I can treat it.