At the end of my rope

Hi Fiona,

so sorry that you feel so desperate...

I have the same problem with non stop herxing. Last year I herxed for 5,5 months, with no break at all, it drove me crazy. My dr then decided to stop abx, first a month, then 2, up to almost 6 months. Zithromax herxing was horrible for me... During those months off abx I had to bring down the overall severe inflammation that took hold of me. He tested me for the mthfr mutation (results came back normal), so up until today he hasn't figured out why I do not detox enough.

I'm not a dr, but you need to give yourself some breathing space - and some time to recover. Have you talked your dr about this non stop herxing? what is his/her advice? Is he into letting you some time off abx?

Are you detoxing enough? What do you do for detoxing?

During that time off abx I went on Buhner protocol, it was much softer on my system... Now I started back on abx, but just 1 at a time, combined with herbals. Those months off abx saved my life I think, considering the bad state I'm still in.

Controlling the pain of the herxheimer? Lots of us take Turmeric and/or Boswellia against the pain and inflammation. I myself can't tolerate Boswellia, but I tried the Turmeric and it helps a lot against inflammation. Some use rose hip, but I haven't tried that. This is what I take for inflammation: Berberine, Zyflamend, high doses of Omega3 and Aspirin. It took a while to kick in, but I definitely see improvement on the swelling of my joints. The pain is less intense too.

Do you have good contact with your dr? Please tell him/her what you feel - what seem to be details for you can be important information.

These diseases are hard on relationships... my husband sometimes suffers a lot. Bartonella and Lyme are both flaring big time lately, and he's experiencing that, to say the least. I don't back off, I just can't keep my comments to myself, and I express them in a cold way. I appologize, and he says that he knows it's because of the disease. He doesn't take my outbursts too serious. I still feel though that he does not understand it cause he hasn't been there.

Please feel free to ask for information on this forum, the people on here are great, and their knowledge is very broad. I just noticed this is your first post: welcome to the forum!
I don't know if you have read the top thread on the Lyme page 'New to Lyme? ... Start here!' - there is a lot of useful information on there about detoxing, different treatments, interesting links, etc.

Don't loose hope, there are many success stories on here, even from people that have been ill for a very very long time. They give you hope for better days.

Marie

Hi Fiona,

This is such a horrible disease and I, too, am so, so sorry you are feeling so bad.

I don't have much pain other than hip pain when I walk so I can't address that issue but I can address the Babesia. I was taking clindamycin along with Malarone and felt exactly the way you do. There wasn't a minute of let up of herx symptoms. I am now off this combination for now because the LLMD feels I may have a mold problem and I am taking Bactrim to address this issue. My doctor wants to start slow again and I am sure he will be re-starting Babesia treatment this month. It seems herbal treatment is easier on the body but I am willing to tolerate the discomfort for awhile longer. I just wanted you to know that you are not alone.

Patty

Hi Fiona,

let us know how the phone call went... I hope it took some of the pressure off you.

This forum is great, it's been there for me whenever I needed it. I think it's really important to feel connected with other people, cause the mental consequences of these diseases are so hard...

There are a lot of people on here that use saunas. And I think it works good for them. There are some threads on that subject. You can maybe use the search function to have a look?

My dr said that infrared is the best, the other saunas dehydrate a bit too much.

I myself love saunas, but I react quite bad once in them: can't stay in them for more than 5mins and they make me very nauseous and sick. I think it's too much for me...

I'm sure others will jump in with advice on saunas, if not you can start a thread about it.

Marie 

Hi Fiona.

Everyday is a new challenge with this. I think you may need to take a break or change what you are doing if you cannot tolerate it. We all have a breaking point. Also how long will the intense herxing last ? I think it is limited but ask your dr if she has any idea.

I dont know if the pot but you can try. If it doesnt make you feel worse than try something else. I do the epsom salt baths and the low level laser has also helped me. It is not great for you stomach but I have used Alleve a lot.

I hope you are through the worst of it. I pray your good health is returned. >:)

Hi Fiona,
Since you now realize that discussion of "that" isn't allowed, I do hope you don't mind if I edit it out of your post to comply. I wish I could comment further, but I must stick to the rules.

I would advise against hot baths!! That will raise your body temp which will kill off more bacteria, which will further drown your body in toxins needing to be removed. Many have made this mistake (me included ) and have regretted it. Please use our detox soaks with Epsom Salt and peroxide and only use lukewarm water to start. As you find your tolerating this, then you can slowly warm the water until you have a nicely warmed bath to soak in. Please see our "New to Lyme? Start here!" thread as it has information about detoxing and more - much more!

There are actually many Lyme patients that find out they can't tolerate the abx, so do be careful please! If you are one of the ones who can't use them, trying to use them will only set you back further. Many can use abx and herbs/homeopathic things and they usually have better results than those who use abx only. Although each of us is very different and so these infections will respond differently in each of us.

And for your pain, I would suggest what Marie has suggested, only add in ginger root as well. The ginger will help make the others more effective.

I use powdered ginger root most of the time. It seems to be more than effective enough for me, although some may need it to be fresher, so a little raw (chopped or grated) will do wonders - as you said! When my nausea is completely out of control and I don't even want to move due to it, I sip on 1 tsp ginger root added to 1 cup of hot water with a little stevia added and it never fails me!

I completely agree with you on how hard this is on our other halves!! I went through severe bouts of rage, depression, and paranoia with my infections and each time I got "me" back, I was always amazed that my hubby was still there! We married when I was ill, but things got considerably worse in the last 13 years that we've been together. Ive come across a site that is set up just for those that have loved ones with Lyme disease. I went through the whole thing when they first started and thought it was a wonderful resource, maybe it could help you and your other half? www.lymespouse.org/‎

I'm so glad that we were here to help you through your dark place! I know that this forum has helped me do that soooo many times over the last 6+ years!! I like to refer to this as a community, rather than a forum as we all like to watch over each other just a bit. Some even make some good friends here, I have many times over!

Very glad to read that you stepped out of a very dark place. Feeling connected and knowing you're not alone is so important in our situation.

Have a good Sunday Fiona,

Marleen