Difference between chronic Lyme and regular Lyme??

In another thread, Razzle said:

"It is not known if Lyme can ever really fully be eliminated once the infection has been present more than a few months. Antibody tests are too inaccurate to use to determine when one is "cured" in the context of chronic Lyme infections. Symptoms are usually the best guide as to whether or not the Lyme is under control."

Now I'm scared.....I'm quite sure I've had this infection for at least two years, probably a lot longer.

Can you expound on this a bit? Explain where does "chronic" Lyme begin and regular Lyme end. Is no one with chronic Lyme ever actually cured then?

Sorry for the newbie question.
JoAnn

I've read that the bacteria can enter the brain within a couple of weeks but I don't think there is a precise answer. Chronic means that the bacteria have entered into the tissues, bone, brain, etc. and is hard to detect in the blood. That's why it is so hard to test for Lyme when someone is chronic. I'm assuming it matters where that person was bit and how fast the bacteria go into the tissue, brain, etc..

In my opinion, I think it is possible to treat, not cure, Chronic Lyme Disease. It is put into remission. When this happens, your own bodies immune system is handling it.

Don't worry about what you read or hear. Try to focus on yourself and getting better. I think to get better, one has to combine therapies like antibiotics WITH supplements.

Thanks CajunGrl and Nicky D! That helps me get a better picture of what chronic Lyme means. I guess I didn't realize that you can't actually get rid of the infection, just keep it in remission in the best case scenario.

My SIL was treated for Lyme 10 years ago. She took abx for 18 months and then refused to take any more. She hasn't relapsed, thank goodness!

Bucci, I have the prescription for doxy but I just ordered a bunch of supplements like probiotics, etc. I don't want to start the doxy until the supplements get here because I've read that it's very important to take all of them together. I hope to be able to start everything within the next couple of days.

I'm actually on an abx called Macrobid for a UTI; I'll be done with that today. They gave me two days of IV Rocephin in the hospital last week, then the Macrobid when I went home. My brain fog is totally out of control right now. I feel like I've lost at least 30 IQ points and it's hard to function at work. I was feeling better when the abx started last week, then all of my neuro symptoms came back twice as bad. Is that a herx perhaps? I don't know, I'm new to this stuff.

The Lyrica is for fibro, so it helps the pain and some of the neuro symptoms too.

Take care,
JoAnn

pepphell,

The probiotics will help her gut since Doxy is pretty harsh on the stomach. It's best that she waits.

And yes, when the disease is caught early, it is easier to eradicate.

Many lyme patients are on more than one ABX at a time. You should discuss this with a LLMD. about your original post, have you seen the movie Under our skin yet? It may help you better understand this disease. 

Best wishes

The movie is a must see for anyone DX with Lyme disease. There is so much to learn about this disease, this is a good referance. If you go to thier web site, or youtube, you can find the movie trailers.

YES, GO HERE

http://www.underourskin.com/store.html

Try not to start everything at once because if you have a bad reaction, you won't know what caused it. Take the doxy and the probiotic if you need to but don't start adding supplements for a few days and then space out the new ones.

If you've never taken this particular probiotic before, you may want to wait a day. Some brands of probiotics really upset my stomach and others are fine. If you start doxy and the probiotics on the same day, you might not be able to tell which one is bothering you. You might decide to stop the doxy when it is actually the probiotic that is bothering you.

Good luck.

Thanks Dagger, I appreciate the advice....good point.

Thanks for sharing your experiences Bucci, I should probably ask my LLMD to specify exactly how I should take these things together.

I just came from my neurologist who told me that all of my MRIs, lumbar puncture, nerve tests, etc., are negative (YAY!!!) and so he thinks my neuro symptoms are probably due to the Lyme! But I know that fibro and other disorders can cause brain fog too, so it's hard to say.

The morphine was given to me in the hospital for this really bad abdominal pain I was having.. They decided on morphine because it doesn't affect the liver much.

Sorry you're having so much trouble.....I hope you feel better soon!

Thanks so much for your input Denise, I really appreciate it! Yes, I've purchased the detox bath ingredients and plan to start these tomorrow, along with the doxycycline.

My husband and I are currently eating grain free, but not entirely low carb. I'll have to work on that. :)

Thanks again!
JoAnn

The reason I said what I did is because the tests are so inaccurate that there is no way to prove or confirm whether the Lyme is actually gone or not. And Lyme is so deceptive, so sneaky and good at hiding from the immune system and disguising itself as something that is supposed to be there, that even tissue samples tested for Lyme DNA can be falsely negative. Therefore, the only way to know one is doing well is by symptoms (or lack thereof).

Some believe there are 3 stages of Lyme (there are varying names & lengths of time) - Acute Lyme (within first 1-2 months), Acute Disseminated (within first 2-6 months), and Chronic Disseminated (after 6 months). I don't agree with this...in my opinion, there are 2 - Acute (within first 1-2 months) and Chronic (2+ months). Why the distinction between Acute & Chronic Disseminated makes no sense to me. Once the infection has been present long enough to go through multiple generations (Lyme reproduce once every 3-5 weeks), it has moved beyond the initial stage (i.e., moved from bloodstream into the tissues) and found good hiding places. It has begun making biofilm communities, and begun to set up colonies in various tissues. It has begun to hide from the immune system, mimic chemicals (hormones, etc.) in the body to gain access to the brain, and generally adapted itself to the body. This is all my personal opinion, based on much reading and what little I understand about the human body.

nasalady, in light of all of your autoimmune diagnoses, I'd suggest the idea that maybe Lyme is the underlying common thread, and that maybe there is a chance that treating the Lyme (and any coinfections) will make your other conditions easier to manage, or even make them disappear altogether. I'm not promising this, but it is a possibility. I say this because I know it can happen, so I want to encourage you and give you hope - I too am hoping most if not all the crazy things wrong with my own body are due to Lyme/coinfections as well, and that once the Lyme/coinfections are under control, the other conditions will become less of an issue.

Take care,

pepphell said...
speaking of doxy, it gave me upset stomach first few days. but now for the last 2.5 days i feel constipated. its strange. i am not taking any probiotic, but eating greek yogurt after a meal.

also why do they recommend lyme patients to get off wheat? isn't wheat supposed to be good. I love wheat berries, and wheat can be a solid source of fiber/carbs for me. It gives me energy, as is I am eating like a diabetic patient. I am finding it very tough to get off wheat (since I don't eat meat).

Razzle, if 2mo+ is all what it takes to be chronic, then time really is of no essence here. If you become chronic for 5 yrs or 5 months, treatment should be the same. But then why would docs suggest that the early you find, the more likely it is to cure? Furthermore, if lyme has established itself into places to hide.. then its even possible that a guy with short duration of lyme (lets say 2yrs) may never get cured ever, where as a person with 10 yrs of lyme may get better. This is scary. I am scared of IV and PICC :(( When does one get to that point?

Remember not to eat your yogurt w/in two hours of your abx. You really should be on probiotics in addition to the yogurt.

Also, make sure you eat with the doxy - it made me want to hurl my lungs the first time I took it.

 

The reason so many go off of wheat, is usually celiac or gluten intolerance. Often times, chronic illnesses and these issues go hand in hand - sometimes unknowingly. Some avoid processed foods (even 'healthy' breads and certain grains) because of the sugar breakdowns - that feed the bad "bugs".

 

Please get some probiotics - I hope your doing better soon

Razzle said...

nasalady, in light of all of your autoimmune diagnoses, I'd suggest the idea that maybe Lyme is the underlying common thread, and that maybe there is a chance that treating the Lyme (and any coinfections) will make your other conditions easier to manage, or even make them disappear altogether. I'm not promising this, but it is a possibility. I say this because I know it can happen, so I want to encourage you and give you hope - I too am hoping most if not all the crazy things wrong with my own body are due to Lyme/coinfections as well, and that once the Lyme/coinfections are under control, the other conditions will become less of an issue.

Thank you so much, Razzle, for your wonderful posts. They are always so thoughtfully written and absolutely crammed with important information! I have learned so much from you already!

I do have hope that some of my AI diseases may disappear or go into remission as I progress in the Lyme disease treatment protocol.

I've tried to come up with a sort of timeline for when I think I became infected with Lyme, and have decided that nearly all of my diagnoses from 2008 onward were post-Lyme, and therefore suspect. The suspect diagnoses include RA, lupus, AIH, and fibro. I know that I had celiac disease, Hashimoto's thyroiditis, psoriasis, and asthma pre-Lyme, so Lyme did not cause those issues.

As I've mentioned before, celiac disease is notorious for helping other AI diseases develop too, so it is possible that some of the newer AI issues are real, and not just Lyme in disguise....but I really hope NOT! I want them to disappear as the Lyme begins to die out.

Thanks again, and take care,
JoAnn