4 months of treatment. Still no better.

Hello,   For the past 4 months I have been on Doxy. For the past month I have also been on Ceftin. I have not gotten any better. If anything I think I’m worse off now.   I have nearly constant pain in most of my body. My muscles are always sore and weak. My joints always hurt and are very load. They always snap and pop, even ones that I didn’t have an issue with a month ago. I also seem much weaker than before which is saying something because I was already pretty weak. My finger joints in my left hand feel swollen constantly but they don’t look swollen. Sometimes my muscles feel so weak that breathing is a conscious effort.   I just wonder (not for the first time) if this can really be Lyme. I feel like my body systematically breaking down. I have 2 other conditions that are most commonly associated with autoimmune disorders, yet I have no diagnosis of an autoimmune disorder. I just feel like nothing I do works and if I progress at this rate I won’t be around a year from now.     I’m on the brink of losing my job and I just found out my short term disability which my job provides, was denied. That means I won’t get pain for the 2 months I was off. It also means I have no more FMLA time available until November. The chances of me making that long without missing time are zero. If I’m lucky I’ll make it to through this month without getting fired.   I am completely spent. I feel like I’m on the wrong treatment. I don’t have good days. I don’t herx. I’m just really bad almost all the time. I think I convinced myself it was Lyme because as terrible as it is, at least there is some hope of getting better. If I look at the progression of symptoms though it is clear that I was fooling myself.   I mean shouldn’t I have seen some improvement by now? Even a tiny bit? Instead I’m worse. It just doesn’t seem right.

It sounds like your treatment needs to be switched around or you may not be able to tolerate abx treatment. I know that I couldn't. I used abx for a year and only got worse. I stopped the abx, detoxed like my life depended on it (it did!!), and then started herbal treatments - 1 year later I was healed from Lyme & Bart, a year after that I was healed from Babesia. This was after being infected and undiagnosed for at least 40 years.

If you haven't seen anything other than worsening symptoms after 2 - 3 months of treatment, your treatment isn't working. Here's the tricky part though - the treatment may not be working because the body isn't functioning well enough yet. If you have adrenal, thyroid or other conditions, they can stop the healing simply because the body is still struggling to survive - healing is secondary in a way at that point.

Other co-infections, mold exposure and other conditions can also stop or slow healing, so be sure to have checked carefully into all those things as well.

With the experience that I had personally, and what I've watched others go through, here is what I believe needs to happen for many of us to heal:

a)Detoxing - gene mutations, mold exposure and multiple tick-borne infections can all prevent us from detoxing well, but we must be able to get those toxins out of our bodies. I have not had any of the gene mutation testing done, although I do seem to have the same kind of issues as those that do - so I figured it was best for me to assume that I did and work to get my body to detox much better. It took a lot of diet changes as things with my body changed, I had to use a foot soak about 4 or 5 times a week - anything else seemed to be too much too fast for my body - dry skin brushing, making sure my bowels moved at least once a day (sorry if it's TMI!) pushing myself to drink at least 64 ounces of lemon water each and every day, liver/gall bladder flushes (all natural) and keeping the amount of stress in my life at a bare minimum. If you are not detoxing much yet, you can find some really good detoxing suggestions in the "New to Lyme?" thread that sits at the top of the forum:
https://www.healingwell.com/community/default.aspx?f=30&m=1606610

b)Supporting the body functions/systems. We have to have the body working at it's peak performance to heal from something as devastating as these infections. Supporting any gland, organ, body system that is struggling will allow the body to switch it's 'concentration' from just trying to function over to healing.

c) Raise the immune function. Many legitimate Lyme researchers now believe that it's the lowered immune function that determines who gets chronic Lyme and who heals right away. We already know that Lyme lowers the immune function and when a person has Bartonella and/or Babesia, the immune function is further compromised, so to heal we must raise our immune function.

d) Lastly, oddly enough, are anti-infective treatments. Many of us have experienced treatment failures, so we can see that the treatments aren't the only thing we need to have - there has to be more to the equation, but anti-infective treatments are very important!! Lyme bacteria are one of the most complicated bacteria!

I think you should try the Buhner protocol - and you've got it there sitting anyway.

Maybe take a page from Traveler's book.

I have been doing the Buhner protocol for 6-7 weeks now, and although I still have a lot of pain, some things have improved. My mood is better, I now feel stronger emotionally. I am having some nights where I sleep better (which is huge for me). I still have a lot of pain, and it's difficult to guage - but it must be less as I am getting out and doing more activities.
I have made dinner for my husband 4 nights in a row now... a record for me - haven't done that in the past 6 months.

I am still undiagnosed...and not on any antibiotics.
And, I'm not even doing the Buhner recommended brand - I am buying the products from our health food store...so if you have the "real" Buhner products - you should really give it a try...and not for a couple of weeks - as it can take months.

Start now!

Akkami,
You can use the same 'recipe' as the Epsom Salt baths and use them as a foot bath too - it will help your body continue to detox even though you aren't using the full bath detox.

I would suggest that you try Buhner's protocol since you have everything. It's safe to use with abx if you choose. Just be sure to do more detoxing by either increasing how many times a week you do all those things you are already doing or by adding in more detoxing things.

To Akkami--I don't have any great advice cause I am in the same boat but I sure know what you are feeling and hope things somehow change for you and improve.

As someone on the outside looking in and not knowing your particular case, I'd like to mention a couple things. Your physician is pushing the methionine cycle aggressively. In most cases, this is beneficial for detoxification. But if you have a homo or hetero CBS 699C, you could be contributing to the problem. Many (or all) of the supplements you are taking are high in thiols or sulfur. You are eating paleo which I assumes you are eating meat with this diet. I know I often sound like a broken record, but meat contains nitrogen (and sulfur) and too much nitrogen leads to excess ammonia production. Too many thiols and a CBS mutation leads to too much ammonia production. The ginger tea can decrease methyltransferases which will decrease the shortcut through the methionine cycle so stopping that may be something to try.

You could be an over methylator and pushing the methionine cycle is contributing to your problem. I don't think this is the case, but it's something to think about.

IMO, the popping in the joints is due to too much nitrogen. You need to decrease your nitrogen intake. Look at it this way, what you are doing is not working for what ever reason. My opinion is that your pathways are blocked. Genetic testing could help, but what ever you are eating isn't helping you.

Delmar said...
Traveler - what herbal protocol did you do?

I've been treating for 11 weeks now and I do have some good days, but I'm not having nearly as many as I'd like or as frequently as I'd like. I believe I've seen some improvement overall though.

All very good suggestions! I would encourage you to check into the possibility of not being able to detox well also. It's a fairly common problem with chronic Lyme patients and one that I dealt with some too.

To answer your question to me though, you can read what I did/went through here: www.healingwell.com/community/default.aspx?f=30&m=2977364

For Lyme, what I used may or may not help most people, so I usually suggest people try Buhner's (buhnerhealinglyme.com/) as I've watched many people be helped by it.

Of course, if you would like to, you can email me and we can go into more detail.