Getting better then worse...

Hi all,

Just joined this forum and looking for some help and advice.

Here's a brief history. Got bit in July 2013. Lyme blood tests confirmed by Igenix and Infectolab in February 2014. Started antibiotic treatment in February 2014. Being followed by a LLMD in Seattle, USA. No co-infections.

Current antibiotic medication is Clarithromycin 500 mg BID and Tinidazole 500mg BID on pulse 4 days on and 3 days off. Plus loads of supplements and vitamins.

The past 3 months, I have been noticing improvements in my symptoms. However, since changing my tinidazole pulse regime to 4 on and 3 off (from 2 weeks on, and 2 weeks off) my symptoms have got much worse this week.

I am not sure if this is a herx. I feel ok in myself, but my symptoms have got much worse and feel that I am back to square 1. I am detoxing daily and trying to do everything possible to support my body.

Could anyone please shed any light as to why my symptoms have worsened after 3 months into treatment? Tinidazole is supposed to be a great drug for Lyme, but why would it cause a worsening of my symptoms? Does this sound like a herx...?

I am grateful for any advice. I am feeling very upset and depressed that things have changed for the worse. I understand that treating Lyme is an up and down journey, but was expecting Tinidazole to start making things better. Is it possible that the Lyme bacteria is becoming too strong and is not being killed by the antibiotics...?

Sorry for all the questions, but I don't have anyone else to turn to and I am an avid reader of all the Lyme posts on this forum.

Thanks very much!

Hi Unlucky77. Welcome to the forum. I'm in the PNW too. I haven't done abx, so someone else here will have suggestions for you. No apology needed, so ask all you want! Have you looked through the "New to Lyme?" thread at the top of the page? There's a lot to be learned there. Good luck!

I came negative on Lyme and positive on Ehrlichia from Infectolab. Fry showed Babesia and Protomyxzoa and the dr. thinks I also have Bartonella. Tests are chronically inaccurate. You may be dealing with a coinfection. Or it may be a herx.

Hang in there it sounds like a herx to me. Every time I change things up I have a herx, then I start feeling better and better. Some abx will make you feel better and some won't. And it's different for everyone. Just keep in close contact with your Dr. he'll know what to try next.
And yes I know how frustrating it is to feel good and think you're almost done then a horrible symptom (pots) comes back strong. That's been my week:( I guess we have to get mad, get over it, and go on... Good Luck!

I also have the heavy thighs and legs especially mornings. They also tingle and burn. There was a time last year where it caused me to limp up and down the stairs. Luckily it was only for a few days.

Two things you can look into for the rocking boat feeling. Babesia and mold. It can be other things but those two come to mind.

Thanks to everyone for their advice and encouragement. I am really glad that I joined this forum. The support, hope and encouragement that people give to one another, at times to a complete stranger, is just so kind, touching and admirable.

I pray that everyone afflicted by this terrible disease makes a full recovery in health and continue to live their lives to the fullest.

Best wishes to everyone!

You could have a parasite. Tindamax is an anti-parasitic (I've only ever taken it for that purpose). I'm currently not on that medication, but dealing with very similar symptoms to yours and have been tentatively diagnosed with a blood (not stomach) parasite, either babesia or the PL one found by Fry Labs - waiting for testing to confirm. I took Tindamax and the herx was HORRIBLE. I used to have lyme and bart, but those are in remission, so my symptoms aren't from those (different symptoms).

We share your feelings about dealing with this illness. It is very hard but you are fighting and that matters. It is human to struggle with our emotions. I would cry more often but crying gives me really bad headaches. Crying is a release, this is a heavy experience. Feel the feelings, ghe fear and then dust yourself off and keep fighting. Reacn out when you need support here and when you have better hours and days return the help to oghers here who are in this battle, helps to knos we are not really alone.

Hi MisterMike,

No blood tests were completely negative for Bartonella despite getting them done twice with Igenix and Infectolab in Germany. But then they only test for 2 strains, so I must have another strain, not uncommon I understand.

It was a clinical diagnosis by my LLMD that we came to the conclusion that I may be harbouring a Bartonella infection. I don't have the classic symptoms of Bartonella, so that is why we didn't think I had it at first. But I've got very strong neurological / CNS symptoms, which were not improving despite treatment whilst improvements made in other areas. So after a long consultation with my Dr we decided that we're missing something and this is Bartonella. Now on Rifampin and had a proper herx for the first time, wiped me out for 4 days!

For Lyme, I am on Biaxin 1000mg and Amoxicillin at 6000mg per day. Have had to stop Tinidazole for the time being, but taking GSE extract!

Just goes to show the importance of a good LLMD!

Unlucky, I hope to have the same story as you soon. I am convinced my son also has Bart, but our LLMD doesn't think the co-infections are as bad as the Lyme. Hoping he'll read Horowitz' book and start to 'get it' soon, or I may have to get pushy. Congrats on making progress in this long journey and good luck on the new regimen!