Hi! It sounds like you are on a great path with the healthy diet and exercise!

As far as lab work, even at the specialty labs there is large room for error bc of the way lyme & babesia get into your body & how they affect your immune system. I think that if you have an experienced LLMD, they will just use labs as supporting evidence for a clinical diagnosis. Is your doctor an LLMD? I would highly recommend getting one especially if you think you may have additional coinfections like babesia, because everyone is different and a good doctor tailors the treatment protocol to the individual's needs. But they need to have enough experience in it to be able to do a good job with it!
Most people go with Igenix for lyme tests. Fry labs is also supposed to be good especially for bartonella (which you should consider also bc of your anxiety as well) & there is a new blood culture lyme test available for lyme from a different lab.

As for treatment options, read up on it all you can & id say go wuth your gut. Many people with neurological symptoms do need extensive ABX to address lyme in the brain, but it souns more like the lyme maynbe in your tissues & joints more than causing neuro issues? That is like me, but my hubby has the neuro stuff. for him we are doing antibiotics and lots of nutritional and herbal supplements, so i dont think you have to do just one thing or the other. If you could get a doctor who knows his/her way around both kinds of paths, that would be ideal i guess!

I will say that sometimes getting vitamin B12 shots can do wonders for your energy, you might want to check it out with your doctor!

I go a lot to lymenet.org to look up info on medical questions, advice, or even to ask about opinions on doctors. They have a very extensive discussion board! Also look at dr B's guidelines for diagnosis and treatment of lyme on the ILADS website, that is a very huge but very informative thing to read!

I think it is important to find the right doctor, one you trust, that is SO tough to do, but when you do, it will make a huge difference! We went to 3 different LLMDs and the last one we are very happy with, even though it is a lot of money bc insurance wont cover it.

The supplement immuplex by standard process has done wonders for my hubby! I bet your naturopath dr is familiar with it.

I hope this helps, if you have any questions you can message me anytime.

Oh yeah, probiotics too! Those have been really helpful :)

Thank you soooooooo much WheelWatcher! I know my post was long and I appreciate you taking the time to read it and write such a thorough response.

I have an LLMD, but he is not as experienced as I would like. I feel comfortable staying with him for now because he is so experienced with psych and autoimmune issues and he and his partners are actively persuing better treatments for lyme (new products, recently attended conference). I also feel like the muscle testing has served me well so far and will continue to guide us in my treatment. I also like that my doc can prescribe the ABX if i go that route.

Is bartonella different than lyme? I thought they were the same thing.

Thank you for the lab recommendations - very helpful!

Good to know that ABX are often needed for neuro issues. I'll have to read up on that.

I'll have to ask my doc about B12 shots. B12 pills make my anxiety worse, so I always assumed I couldn't do the shots.

I will definitely check out lymenet, ILADS and immuplex. Thanks!

I've been on probiotics for a while. Glad to hear that they help with lyme too.

Again, thank you so much and I'll be sure to message you if I have any other questions :-)

No need to answer my question about bartonella. I just read up on it :-)

Hi cocowyo,

It sounds like your doctor is doing ok for now, so that is good! The first LLMD we saw didnt even recognize the lyme symptoms of my husband! He has a LOT of coinfections and complications, and i think she decided she would just rather pass him on to the next doctor instead of dealing with someone so sick. The LLMD we have now told us hubby is like poster boy for Lyme, because every one of his crazy symptoms are things she sees all the time with her really sick patients.

Another thing you might want to consider is a test for the MTHRFR gene. If you have it, it makes it much harder for your body to clear out toxins, so you would need to keep that in mind when figuring out your treatment plans. Apparently a good number of people in the population do have it. Some doctors have a specific supplement and treatment protocol for addressing the issues that come from this gene, so maybe that is something else to look into if you are interested.

On another note, i thought of something i wish id known about lyme a long time ago... Most researchers deny that it can be passed from partner to partner or to an unborn baby through bodily fluids... But many experienced LLMDs see entire families in their practice, so obviously in some cases it DOES happen. In my case, my hubby has it, i am about 95% sure i have it, and we have a toddler who was born before we had any idea what was wrong with our health, so now we are watching him like a hawk to try to catch any developing symptoms if they do arrive in him :( some women with lyme have babies born with unexplained medical problems, and they turn out to have lyme.. Other kids seem fine at first & develop problems later... And maybe some kids are born with immune systems strong enou tonkeep the infection under control. It is something to keep in mind. Im not trying to scare you, but it is good to know so you can take that into account in your relationships. Dr j says that if women are treated with 2 antibiotics during pregnancy, it greatly decreases the chance of transmission to the baby. I wish i had known all this before i got pregnant with my little boy! We just have to go forward from where we are now the best we can.

Take care! :)

More great info WW - thanks!

I do have the MTHFR mutation which we have been treating since I was diagnosed with it a year ago. It makes me feel good that my doc knew to look for it and how to treat it. I didn't know it affected the body's ability to detox, which makes me more determined to clean up my diet and environment as much as possible.

I've read in other places that they are seeing lyme in families. I really hope your son is okay. If not, he is so lucky to have LL parents who can get him treated early! I don't have children and I don't plan to, but I appreciate the info in case I need it in the future.

Thanks again for all your help!
C

hi. Welcome and best wishes to you. I'm having so much pain and illness this week that I won't run super long. I'll stick with what I wish I'd known and see where that goes.

First off, you are in a process and please have patience with yourself. Please know you will have good and bad daystimes. No matter what type of case your brain tries to build in the moment, you will not feel however you're feeling forever. Remember this in your most difficult moments.

I've met numerous lyme pts now, and I'll tell you, the ones I most often hear, "I have my life back now" from- well, they're the ones who did hard-core, long-term (longer than 30 days by my definition) antibiotics.

I would also insist on basic specialized testing for Lyme and the co-infections like rickettsial infections, including Erliichia and RMSF; babesia, and bartonella. A very dear friend was just made VERY sick by untested treatment by a naturopath. She almost died. If they had just tested out from her symptoms, she might be better by now. Check out Dr Horowitz' YouTube talks on co-infections. Even if your testing isn't totally accurate, at least you'll have something for comparison, even if you don't do blood work again for several years. Trust me, with all those symptoms, something will show up.

Of all the people I've known, including at least 5 children, the ones with the most psych issues, especially drastic mood swings, anxiety, and suicidal difficuties, this group seems to have more parasite infections, including cellular parasites like babesia.

Also, sidebar- you said you launched into this after a flu shot. Flu shots for over age 3 are still preserved with mercury based solutions, ie Thimerosol. I realize you know about the gene, but encourage you to find out the lot number, etc. of your vaccine (yes, by law they have to keep all that info). If you struggle with your process, it may be you need additional heavy metal testing. If you look up the lot number and it is considered a combination vaccine, look up the individual components and see what they are preserved with. I worked with one little boy that was really screwed up after his MMR and his scientist mother taught me all this. Sure enough, even thogh he was 18 months old, and his family was reassured there was no mercury in the vaccine, the individual components of his MMR shot were preserved with mercury and some other trace metals. He is much better now.

Another sidebar, please look up vit D and lyme/co-infections. My vit D is low even with supplements, but I do low-dose only due to one dr telling me vit D feeds lyme or one of the co-infections (I don't remember which one, and didn't write it down and have forgotten). I also keep my vit D @ 1-2K units because: Lyme attacks the endocrine system- it hit my thyroid and parathyroids hard. For info on this, parathyroid.com is amazing resource and speaks to vit D supplements. Because now my parathyroid numbers are off, if I took high dose vit. D, I could have a stroke. I will write more if my lyme-randomized brain kicks anything further up and out anytime soon! :)Georgia

@Georgia,

I'm sorry to hear that you are having a rough week. Thank you so much for your lengthy reply. I know it's hard w/brain fog!

Thank you for the reminder to be gentle with myself and "this too shall pass". I'm preparing my house for sale and I'm bone-tired...even first thing in the morning. My pain is pretty well-managed, thank goodness, but I do have to pace myself.

I am hearing over and over that hardcore antibiotics are the way to go. Ugh. I wouldn't mind so much if it weren't for the yeast issues.

I did have a CD57 test done. I get the results on Thursday. I will watch the Horowitz video and ask my doc about testing for co-infections.

Strangely, I'm glad to hear that the people you've known with the worst psych issues improved when treated for parasites and babesia. We are treating parasites first and I did test positive for babesia via muscle testing.

There's definitely something going on w/heavy metals, so I don't feel it's necessary to get the lot number of my flu shot. I'm following Klinghardt's recommended sequence of treatment (the Babuschka principle), so we'll get to the metals next. Here's more info on the Babuschka principle.
http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/101357?#000000

I have mixed feelings about vitamin D right now. It is confusing. My levels are low unless I supplement, but I stopped it 4 weeks ago because we were concerned it is bad for Lyme. I changed a bunch of other things around the same time and developed terrible tinnitus. Long story short, I stopped everything new and restarted vitamin D a couple days ago. I'm optimistic that the D will help because I read that a deficiency can cause tinnitus.

I'll have to check out the parathyroid site. I know my endocrine system is out of whack as well.

Thanks again and feel better soon!

Thanks for the great Kl. resource-great explanation! Georgia

I am not sure about how valid this muscle testing stuff is. Usually Doctors do a blood test. Be careful, there are a lot of quacks out there that take advantage of people!

http://www.quackwatch.com/01QuackeryRelatedTopics/Tests/ak.html

Absolutely, definitely, and without a doubt I would call up a real doctor--sorry, another dr -- and get a second opinion. I mean, it wouldn't surprise me if you don't even have Lyme.

Hi Coco, I see this was posted four years ago. I'd be curious to
know how things are going now? If you'd like to fill us in.

What do you think of the diagnosis - should I get lab work? you definitely should
What lab work is the most reliable? the test results at igenex.com
Should I consider antibiotics, or go straight to the homeopathic treatment? neither, they both don't do a whole lot
What other treatment do you recommend? the treatment program over at shinealightonlyme.com
Good sources for information/support? again, shinealightonlyme.com has lots of information to look through

Hello there, I looked carefully into your description of your symptoms.I'm sorry to hear that you've been struggling with lyme disease for so many years.Lyme disease requires a very professional medical treatment, but at the same time your mood is important, maintain a good attitude, and continue to fight with lyme disease.I was a Lyme disease patient once, after few years, I found out a serial herb medicine which called DR ZHANG. They’ve been doing a medical study on Lyme disease by using herb medicine for a real long time. By using their medicine, my symptoms has been greatly relieved. And You can find helpful help on there website www.hepapro.com. Wish you get well early!