New to this forum - Positive lyme test, still no treatment. Please help!

Good news, jsch, good luck, keep us posted !

Congratz on one of your first big steps! I know when I first saw my first LLMD both myself and my mother was elated to know that we're on a path to get things fixed. And yes, please keep us posted on your progress!

Hi svalentina, that's interesting. I've seen many people on this forum talk about this, but when I went to the hospital back in Holland I heard that they do not test for bartonella or babesia, nor do they believe people can get infected with it in Holland. So at first I doubted it was even a possibility, I thought perhaps it's more common in the US. But now I'm reading an article that states that 40% of ticks in Germany and Holland are infected with Bartonella, so this has really got me thinking. Can it be treated with the same antibiotics I am taking now (Doxycycline)? Or will it require a more aggressive approach? I do not have, nor have I had in the past the typical stretch-mark/cat-scratch rashes as far as I know.

Hi everyone. So I've been on Doxy for almost a week now, and I'm definitely herxing. The pressure in my head has become almost unbearable, the back pain is 10X worse than it was before, I've got a really tight jaw, and have muscle twitches and spasms everywhere. I've been detoxing with tea, ginger and lime water, and epsom salt foot baths. Next to that I'm still taking teasel root tincture which seems to be working well.

All is well, but I just got a call from the hospital back in Holland. They got the results back from the second test, it's a definite positive (as if I didn't already know that), they found high amounts of antibodies (IgG), and I have a high white blood cell count, not sure what that's supposed to mean. I guess it means a definite active infection? They want to do a spinal tap to check for spirochetes in my spinal fluid, they think it's neurological (as if I didn't already know that as well).

Now here's the thing. I have to head back home at the beginning of February anyway for various reasons (I knew I would not be able to get long term treatment in Malaysia from the start, I started treatment here merely to prevent the bacteria from doing even more damage than it had already done), so I'm thinking of doing the spinal tap anyway when I get back home. If it comes back positive I will get IV antibiotics (ceftriaxon, as it can pass the blood/brain barrier I've heard) free of charge. I double checked, and they will treat for longer than a month if necessary thank god. My insurance will cover all the costs. But I know these spinal taps are horribly inaccurate, and if it were to come back negative I'm afraid I won't get the treatment I need. Does anyone know whether a spinal tap will be even less accurate after I've already had treatment with doxycycline?

I know this all sounds stupid, most of you will probably tell me to stay in Malaysia to continue treatment there. But the costs of IV antibiotics here are quite high, not sure whether I or my mother can afford that at the moment, and I really must head back. I plan on bringing a couple months worth of oral antibiotics with me just in case though. If the results of the spinal tap takes another month or so, at least I can keep the damage to a minimum. What do you guys think?

Thanks Trav. I will reconsider. I'm not too comfortable with this spinal tap, nor am I comfortable with the hospital back home in general. They really seem to be treating with guidelines comparable to the CDC guidelines in the US. The only reason I was considering it was due to the fact that it's free. What antibiotics can penetrate the blood/brain barrier that you know of? I will ask the ID specialist at my next appt. tomorrow. Oral antibiotics are extremely affordable here in Malaysia, and although the doxycycline I'm taking at the moment is a very low dosage, it seems to be working very well.

Thank you so much Girlie, I will suggest it to my doctor tomorrow. I am a lot more comfortable with the idea of oral antibiotics anyway. My stomach is managing just fine so far. And I will go to an herbalist this week for the Japanese Knotweed. I've heard a lot of good things about that. Thank you

Thank you Trav, I've looked at the ILADS guidelines, and just wish there were LLMD's back home that would treat according to those guidelines. I've checked, they don't exist. I am so jealous of people living in the US who are able to get proper treatment. The Netherlands is ahead of a lot of countries when it comes to health care, but when it comes to lyme it is almost embarrassing.

I am detoxing as much as possible, it seems to be working all right. Not sure how to relieve the pressure in my head though. That's the worst.

So I've discussed everything with my doctor here in Malaysia, including my doubts about the spinal tap they want me to do back home. He thinks a spinal tap is totally unnecessary and kind of ridiculous after I've had two positive lyme tests. He also said he wants to help me through this until I've made a full recovery. I can contact him anytime, unlike the doctor at the hospital back home, which I think is a good relationship to have with the doctor treating you for lyme. He will write a letter for my insurance company explaining why I need to do my treatment here immediately, he said they cannot deny my claim then. I hope he's right. I've also decided to prolong my trip by another month. As much as I need to head back home, this should be my first priority, so I've decided to stay.

He prescribed another 3 weeks of Doxy to see how my psych and physical symptoms are after a month. If there's no progress, he wants to do IV-ceftriaxon for a month to see if it will relieve some of my psych symptoms. If after that month, and I need to head back, I'm still experiencing symptoms, he will give me oral antibiotics to take with me back home, something that would be virtually impossible in the Netherlands.

I was reading the guidelines the hospital in the Netherlands uses, this part is what worried me most. I'll translate it the best I can. It states that when the patient has complaints (symptoms) after their Lyme treatment (which is generally 1 month according to the guidelines):

discuss with a patient with chronic lyme-associated complaints that:

-It's highly unlikely that their symptoms are being caused by an active infection with Borrellia Burgdorferi

-research has shown that long-term antibiotic treatment will have no effect

-that for that reason additional antibiotic treatment will not be an option

-that it's worth examining whether their complaints can be relieved by talking to a psychiatrist


To heck with that hospital. If they don't believe in chronic lyme, and they deny a patient treatment when they obviously still have the disease, they are not worth my time!

Just an update: So I'm in the hospital at the moment. Had a picc line placed on monday. The procedure didn't go too well, the tube in my vein couldn't go around the curve by my armpit towards my heart, so they had to remove it and install it in my right arm. Turned a 15 minute procedure into over an hour, but oh well, it's in and it wasn't very painful.

I will be staying here the coming week so I can be monitored. The doctor started me off on 4mg of Rocephin, and will continue with 2mg once a day plus 200mg of oral doxycycline a day. The treatment of IV antibiotics will be for at least a month, oral antibiotics for a longer period of time.

Initially I was worried my insurance wouldn't cover the costs, but I've finally got that sorted, and they will cover everything. Such a relief when I got that confirmation :)

I must say that I'm already noticing major improvements. Normally I would not be able to handle a busy restaurant, the past half a year that was something I would always avoid because of spacing out, social anxiety and just generally being overwhelmed by it all. But I left the hospital yesterday to go out for lunch with my mother, and it went perfect. As though I was my old self, it was surreal. It's way too early to start cheering, but the improvement was so profound, I'm praying it will stay this way.

Anyway, just wanted to give you guys an update on my treatment. Will keep you guys posted :)

Hi Trav! So good to hear from you :)

Yes, I'm still in the hospital. It's partially for insurance reasons, but also because having a PICC line in the tropics can be dangerous I've been told by my doctor. I will be here another couple of weeks, but I'm allowed to leave every now and then if I cover up my arm properly.

I have been detoxing, but it's a little harder to do that being in the hospital. I bought a bunch of Stevia as I heard it has cyst-busting properties, I take that in my coffee and tea. I also bought probiotics and I've been drinking a lot of green tea. I'm also still taking teasel root tincture, but that's almost finished unfortunately.

It's ups and downs at the moment. My anxiety came back full force a couple of days ago, but generally I feel mentally stronger than I've felt in over half a year. It literally feels like I'm slowly getting my mind back, it's amazing. I hadn't expected to see results that were that obvious so quickly. I know I must be careful with my optimism though.

I also had an MRI yesterday, my doctor wants to check if I have meningitis and see if there are lesions in the brain. I had the worst migraine attack I've ever had in my life at the beginning of treatment, was rolling on the floor in pain, and passed out before I was able to call the nurse. So that was fun. Haven't had that since though, so I think I should be fine.

Ok, I really need some help guys. I'm almost three weeks into treatment, and I'm feeling more anxious, paranoid and depressed than ever. The thought of taking my own life have been scary me, I really need someone to talk to. Tell me this is only temporary, because the way I feel now, it seems it will never get better. In the hospital I hear everyone talking about me, laughing at me. All the nurses. I don't know what's real anymore. I really don't know what to do anymore.

Jsch - how are you doing now? I'll talk with you any time.

Yes, this is only temporary!!! I've been through some pretty dark times myself with these infections.

Be sure to call one of the suicide lines if you feel that thought sticking around a little too much:

Lyme Disease Hotline: 1-800-886-LYME (1-800-886-5963)

U.S. Helplines

National Suicide Hotline

1-800-SUICIDE (1-800-784-2433)

This is a combined network of the Amerian Association of Suicidology, the National Hopeline Network, CONTACT USA, and many other organizations. Call are automatically routed to the nearest crisis center to the phone from which the call for help is placed.


NDMDA Depression Hotline | Support Group. 800-826-3632

Suicide Prevention Services Crisis Hotline 800-784-2433

Suicide Prevention Services Depression Hotline 630-482-9696

Crisis Help Line | For Any Kind of Crisis 800-233-4357

Domestic & Teen Dating Violence | English & Spanish 800-992-2600

Parental Stress Hotline | Help for Parents 800-632-8188

Runaway Hotline | All Calls are Confidential 800-231-6946

Sexual Assault Hotline | Up 24/7 - In English & Spanish 800-223-5001

Suicide & Depression Hotline | Covenant House 800-999-9999



-------USA National Hotlines-------

National Child Abuse Hotline 800-422-4453

National Domestic Violence Hotline 800-799-SAFE

National Domestic Violence Hotline (TDD) 800-787-3224

National Youth Crisis Hotline 800-448-4663

------Online Hotline Resources--------


Or go online for help:

------Online Hotline Resources--------

www.crisischat.org/chat/

www.befrienders.org/

/www.imalive.org/

www.suicidepreventionlifeline.org/

www.suicidepreventionlifeline.org/


There's even a suicide prevention with texting!!!
Need Help? Text “CTL” to 741741.

CTL (Crisis Text Line) helps individuals in crisis by connecting them with a compassionate, trained listener through a toll-free texting service. CTL is available nationwide and 24/7
www.crisistextline.org/ for more information about this option.

Please keep reaching out to people that can understand what you are dealing with. You can beat these feelings!!

jsch, we here really care. No matter how horrible it gets just remember how it would devastate your family. And for that, it would hurt us here too.

We can't help but feel a kindred spirit with a fellow lymie. We are all connected in a weird way.

You are my new family members. I rely on you, confide in you and goofy as it sounds, I love you.

Lean on us. Because next week, we will lean on you. <3

~Annette