About to switch to herbals, can't handle RX treatment anymore. Need some guidance.

I've been off all treatment for 2 weeks now. I couldn't handle the emotional symptoms of herxing and all the head symptoms. It was too much of a roller-coaster to deal with. I was treating babesia with mepron, zithromax, and bactrim so it was pretty harsh. I'm not sure which one was the worst but I assume it was the mepron. I feel a lot more stable now but the symptoms and pain are still there. My nervous system calmed down but I'm still getting headaches, muscle aches, and blurry vision and brain fog. I've been detoxing everyday with salt baths, cholestyramine, chlorella, and Pinella. I just ordered Jernigans NeuroAntitox II CNS/PNS to try and clear my head. I was also taking diflucan for potential yeast and candida but don't know if it's causing symptoms or not. I don't know of way to tell. My GI issues are the least severe, almost non-existent until I started taking mepron.

I really need to clear up my head and CNS symptoms. I'm not sure which infection is responsible because I can't afford testing and am on a super tight budget. My treatment history is below in my signature. I CAN'T EVEN AFFORD A DR VISIT RIGHT NOW. since I'm not working.

Here's the herbals I have:

Japanese Knotweed tincture
CSA tincture
Hawthorn tincture
Houttunyia dry herb
EGCG

Basically I rounded up the herbs previously that follow Buhners protocol for babs and Bart but I don't have the knowledge or energy to come up with a game plan. I'm at a turning point and I need to get something going asap.

I also have l-arginine, lumbrokinase, vitamin c, magnesium, MVI, and a few other supplements.

My main question:

Should I continue RX treatment after a steady detoxing period? Or go the herbal route and continue detoxing. I don't want the bacterial load to increase again but to say the least, I AM SO OVER HERXING RIGHT NOW. I can't deal with it mentally. I know it's a necessity sometimes but the detoxing doesn't seem to help. Maybe I have a detoxification problem that needs addressed. Idk. That was my next step when I go to my LLMD. But I'm going to have to cancel Bc I can't afford the visit.

Any help is appreciated! Just very confused on where i stand and what I'm actually dealing with.

superjo - So, what has your LLMD said about how you've been feeling? He was going to test you for the MTHFR gene at next appt.?

I'm thinking maybe going the herbal route at least for awhile...you can always go back on antibiotics down the road.

I am so sorry you're struggling like this. I am not an herb expert but I am in the exact same boat, trying to deal w/ a polluted brain and sx that require me to halt tx to an extent.

Agree w/ Astroman on everything. It's so important to be able to interpret what your body is telling you and a good LLMD will listen and help you make decisions, accordingly.

I just posted more specific info on finding out how to discover DNA mutations that might be preventing you from detoxing appropriately. Each site also has info that helps you approach how to resolve the issues but others here can also provide support:
www.healingwell.com/community/default.aspx?f=30&m=3413587&g=3414439#m3414439

Also, I wanted to suggest that based on your sx, the chlorella may be releasing way too many hvy mtls that are getting reabsorbed instead of excreted. Chlorella is powerful, tricky stuff and unless you have excellent detox pathways functioning at optimal levels, you could be doing more harm than good.

Detoxing is an art, I think, particularly for those of us with compromised methylation/detox mechanisms. You need to implement a very broad program but you have to do it carefully, slowly and you need to support it the right way and it takes time to figure that out. We've learned here from other posters that daily baths can also overwhelm the system if your pathways are not functioning optimally.

My suggestion to you is to slow everything way down. I just had a conversation w/ my LLMD and asked to stop my abx tx so that I could focus entirely on figuring out how to detox better. Since I am all of a sudden exhibiting lyme flaring sx, she advised me not to stop cold turkey, to cut doses in half, which will hopefully reduce intensity of sx and then I can focus better on improving my detox.

And, how I'm going to improve my detox is a mystery and I'm hoping my colleagues here will help me figure that out. ;)

Regarding yeast/fungal overgrowth, yes, as Astroman suggests, it can cause many issues including "leaky gut" which is a huge mess to solve and may also be contributing or causing your GI problems.
You state the following sx, which are classic for y/f overgrowth: "headaches, muscle aches, and blurry vision and brain fog". Y/f can also cause significant neurotoxins from either y/f build up or y/f die off. Most people who are in tx for lyme & co need antifungals, given the abx and the herbs target good bacteria, which is necessary to control y/f overgrowth.

Please see this post for info on "pure nystatin powder" which is a better option than a systemic anti fungal like Diflucan and what many feel is an important part of successful tx:
www.healingwell.com/community/default.aspx?f=30&m=3412983

Hope this is helpful until others can come along and comment on your herbal approach… hang in there and let us know how you are doing.

p

I agree with the others - You have to listen to your body first, the doctor second - and sometimes you have to stop a lot of things to find out what's not working. It's best to be sure you are able to detox well - you've been in treatment for quite a while without significant healing - that means something's not working.

I believe it's $99 for the genetic testing through 23 & me - maybe you can start saving just a bit of money each month until you save up enough? Guessing about these things is hard - I had to and I'm sure I have detoxing issues too.

I found that I couldn't heal using abx, I only got worse. Once I switched over to herbs, I healed very quickly. Whole herbs have the active ingredients plus other constituents that help protect the body from some of the side effects and promoting healing. I would say at the very least, you should add herbs to your pharma abx if you choose to do them again.

When you are ready - only then (you'll know, you'll feel like you are finally at least steady) - be sure to start only one thing at a time! If you aren't detoxing well, you could overload your body with toxins very, very quickly. Personally I agree with Buhner, the one to start with is Japanese knotweed, as it has the potential to help the most.

Never add in more than one new thing or raise a dose of more than one thing in each week. This gives you time to respond if you start herxing too much and you will know immediately which product was responsible and you will know to go slower with it. If you have done more than one thing in that week, it will be very difficult to know what caused what.

Something that sticks with me is that I have yet to hear someone say that they wished they had gone through treatments faster, it's always something similar to: I wished I had gone slower so that I wouldn't have been so bad off.

If you are having issues with detoxing, you likely should not use the CSA combo, but buy those herbs separately so that you can add them in one at a time as well.

EGCG is a green tea extract that helps treat Babesia, so start slow and low with that as well.

You might find that L-arginine doesn't work for you. It can set off flares of EBV - it set off horrible EBV flares for me.

Houttuynia can set off horrible herxes for many people, some it doesn't bother at all, so be careful with it. Start off low and slow with it as well.

Lymie Girl just posted about having a bad Hawthorne herx, so be careful with that one too. www.healingwell.com/community/default.aspx?f=30&m=3414526

I might be mistaken on this, but I think that the chlorella releases heavy metals as P was saying, but I think that the cholestyramine mops that up - please don't take my word for this, check it out.

A word about Motherwort - it can interfere with the thyroid - only a small amount for some and for others, it can interfere a great deal. I fall into the latter group unfortunately.

I hope you can find some helpful information in all of that! LOL!

superj

Regarding 23andme, yes, the testing is reliable and while it's a relatively new medical focus and they will be discovering new things for awhile, the medical industry already knows quite a bit which should help you at least get a broader picture of your situation and help you fill in the blanks. For the small investment and huge reward, you can't beat it.

It is very reasonable to get overwhelmed and discouraged. We have all been there and it is a tough reality of this disease. But you're way ahead of the game, having found this forum and you're educating YOURSELF, which is more important than anything else. Building your own knowledge will be critical if you stay w/ this MD if you have to. And building your own knowledge will be helpful in finding the right LLMD if you have that opportunity as well. So much can be done on your own, as many many people here are either treating themselves or augmenting their lyme specialist's treatment.

I am going to create a new post to ask for help locating a really simple symptom chart, which helped me target which symptoms indicated which infection, which might help w/ your Bart question. Stay tuned… and keep reading and learning and asking questions if you have them.

p

I think it's okay to experiment and try getting off Rx. Worst case you can go back on them.

Getting off perscription drugs was great for me and my liver. I took antimicrobials for a long time and am now at a point where I don't need much other than a decent exercise routine and sleep.

Knotweed, samento, banderol, all good things. Make sure you remember that our guts need some good bacteria too.

Diet is key, too. Find a good balance of macronutrients. Everyone needs carbs, fats and proteins. If you are sedentary, less carbs. But moving around is essential.

There is a lot involved in recovery. Things to consider that can undermine your recovery:

Gut health
Genetics
Attitude
Metabolism
Thyroid
Hormones
Sleep quality
Immune system
Other atigens
Allergies
Liver health
Biofilm

Lots to investigate beyond Rx. If Rx isn't doing it for you it is good to take a break. This can also do wonders for your immunity, gut and liver.

Good luck.

Thanks for the wealth of info! I'm thinking about starting real slow. I've taken the herbs before with abx at half dosage and managed but often found myself not taking them because I was herxing too hard and just taking too many antimicrobials at once.

At this point, I'm so tired of going up and down with my symptoms. I don't want to herx anymore if possible. It takes a toll on your outlook and overall attitude toward treatment.

How does starting off at 1/4 of dose sound? I'll work myself up after a month or so slowly.

I'll start saving up for 23andme. In the meantime, I'll keep detoxing everyday with chlorella or cholestyamine. Also take Epsom salt baths at least 3 times a week. Watch my diet and keep the good bacteria up with probiotocs. What's the most affordable probiotocs that are sufficient to make up for the antimicrobial? I can't afford the 100 billion CFU's anymore.

Should I address biofilms with herbals? I have lumbrokinase and nattokinase/serrapeptase combo.

Should I do the herbal protocols for all 3 infections at the same time? Lyme, Bart, and babesia? I really don't know what I'm targeting but I suspect I have all 3. Definitely Lyme and Bart, and babesia very likely.

Thanks so much everyone. 23andme is my next big goal. I just can't see myself taking mepron for over 4 months without seeing major improvements along the way. Can't say I've been satisfied with results.

Please start off on as low of a dose as you feel you should. You can ramp up as quickly as you feel your body is handling it too. Just remember, there can be some "lag time" between raising a dose and herxing, around 1 - 2 weeks generally. You'll find the pattern to your own body quickly if you watch.

For example, for myself, when I started something new or raised my dose significantly, it could take up to 3 weeks for a herx to start - and I would herx for 3 weeks as I scrambled to add in detoxing methods slowly enough to not add to my issues, but fast enough to actually keep me from suffering horribly. So for me I remember 3 & 3 - 3 weeks till I herx and then a 3 week herx. It didn't matter what infection or what I added, if it was effective for me that's what I could expect.

And Buhner states that he's seen people heal on must 1/4 doses!! He says it's all in just how much help the body needs. What's an effective dose for one person may only be a starter dose for another person.

Try getting settled with one treatment and once you have the herxing under control and you feel that you can handle starting another protocol for another infection, then try it - but start off slowly and be sure that all the herbs can be used safely at the same time.

On treating biofilms, wait for a bit and see if you need to address them. I'm not seeing nearly as many people needing those things while on herbs as on abx (no offense intended!). It may be that the herbs work differently so the bacteria don't form the biofilms so much, or that the herbs are effective on their own to treat the biofilms. I know that I had to have had plenty of biofilms and cystic forms, but I never used anything specifically to attack either of them - and I've not had any relapses (fingers crossed!).