A little desperate at this point. What should I do next?

Hi all,

So for those that didn't see my first post I'm finishing up my second week of doxycycline. At first I noticed a very mild worsening of symptoms ,but then they returned to I guess "baseline". I recently went on vacation for a few days where I probably pushed myself a little too hard (too much to drink[I know alcohol is not a great idea if it is Lyme and tried to put myself on a limit ,but I ended up caving since I was vacationing], lots of walking, etc). On vacation I had one day where my leg pain was almost gone ,but other than that it was a pretty big struggle for me the whole time (I wanted to have fun, and didn't want to hold my friends back) but I made it through and did have fun. I did have one panic attack (really severe) that came on pretty unexpectedly (chest tightening, heart palpitations),but rest and 5mg valium made it go away after about an hour. I also really struggled going downstairs the whole time (probably took me twice as long to get down any particular set of stairs as my friends due to dizziness and leg pain).

Yesterday was my first day back to work and it was super difficult to get through. I was thinking it was just a recovery period from vacation (which I feel are pretty normal). I slept for probably 12 hours before I started back to work. Went to sleep super early (for me) yesterday and slept another 10 hours or so. Woke up this morning and am completely exhausted still. My leg pain is much worse and I'm feeling pretty dizzy. I don't know if this is due to the possibility of it being lyme, still recovering from vacation, or a combination of both.

I guess my question is at this point is where should I go from here? I don't know if the antibiotics are doing anything. At first I would say my symptoms definitely got a little worse after starting antibiotics but then kind of returned to baseline (except for yesterday and today where I'd say they are way worse ,but again that could be due to the vacation)... I didn't really have any days of improvement. With the negative test result I'm just worried about treating for the wrong thing for too long (I know the tests are inaccurate already ,but just don't want to treat for Lyme and ignore another potential problem). I did also start taking curcumin about 3 times/ day with black pepper (I stated this in my previous post ,but didn't know the dosage on that supplement until I had it translated and found it was only 10mg which I thought was too little so I found a bottle of 500mg which I started taking a week ago). I'm not noticing a big change with the curcumin anymore ,but it is maybe helping a very small amount.

If you read my previous post you know that here in Taiwan I've been unable to find a LLMD, and am unsure of what specific test they performed for Lyme that came back negative. I return to the infection doctor tomorrow to have another liver test (she wanted to do this because she said doxy is hard on the liver) and receive another 2 weeks of doxycycline. I plan to go ahead and do this ,but again I don't know for sure that this is Lyme and don't want to avoid another potential problem. I saw some people talking about DNA connexions lyme test on here and saw they did it themselves. I looked at their website and I'm not sure which test other posters were talking about as it looks more like a website for doctors to order from, but can I really do this test at home by myself? Does anyone know the price and if it'd be possible to do internationally?

Sorry this post was a little all over the place, I'm just really at a loss right now.

Sorry you're going through a tough time. I would start at the "New to Lyme". Reading that could answer many of your questions. I will say that it's holistic road to beat chronic Lyme and co infections. It takes diet, patience and a lot of getting in touch with your body. Worsening of symptoms can mean the treatment is working, it can also mean you aren't doing enough to detox your body. Only you and your MD can figure that out together. Personally though, I wasn't able to make progress until I changed my diet: no sugar, gluten, dairy or absolutely no alcohol.

Reach out to some of the veterans on this board, they can give you great support.

If you do Buhner, it is best to buy his book - there's a ton of information.

The website has his basic protocol...but there is a lot more to it in his books.

In addition to what you mentioned - he does suggest Collagen support.

I would start with the lyme...and start low with one herb - say the JK and take a few weeks to slowly increase the dose. Then add in the next herb...and when you get them all in at a low dose...then gradually increase each one.

It's best to get them all in at low dose because they work synergistically. Then you can continue to gradually increase each one.

After you've been on the lyme protocol for a couple of months, you can then add in herbs for bart or babs.
Sida is in both bart and babs, so that is a good one to add.

The amount of alcohol in the tinctures is very small. Some people put the tinctures in hot water and leave them sit for awhile - hoping that the alcohol dissipates.
But, I have read that doesn't work.

When you're taking more than one herb, you can put them all in the one glass of water and take them together. (I actually only used 1/4 glass of water.

Starting with one ounce is fine - it will take you awhile to get up to even 1/4 tsp...you will want to start with a couple of drops only. The 1/4 tsp is about 30 drops.

Just keep an eye on them - and when you get halfway through the tincture - maybe place another order and then purchase the larger bottles.

You're very welcome!


Just watch - when you get down to half a bottle - if you think you're going to continue, you should order again.

It could take a week or more to get the order. You will know when you receive your first one - how long it takes.


Don't count on Rheumatology being of any help.
I don't know how accurate the ELISA is - I'm thinking maybe even less than 50%.

Mine was similar to Elisa (IFA) and it was negative - since we have a two-tiered system here - if the IFA or Elisa is negative, the Western Blot isn't even done.

I would think it could be even less than 50% reliable.

Girlie- Thanks for the tips! I noticed today that my order is already in transit so hopefully it will be a little faster than I at first expected. Also thanks for the information about the ELISA.

I know I'm playing a numbers game, but the less accurate that test is the more I feel I should keep trying to treat for Lyme for longer than a month. I don't know if I'll be able to get the doctor to prescribe more than a month or not yet though. If not I may consider [I know this isn't the most ideal situation] buying more antibiotics over the counter it's fairly easy to do that here. Obviously, I would prefer not to have to get into that situation(taking abx without a doctor's guidance). I'd also still see a rheumatologist just to see if they do any other testing for other conditions the neuros/ents might have missed.


The Warrior- Thanks for letting me know. It's nice to have that option as a last resort if I feel I need to (last resort because of the expense) to try to help confirm a diagnosis.

Forgot to mention a couple months after the negative IFA (not Igenex - but our standard government test) - I tested IgM positive on the Igenex WB.