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Posted 6/24/2011 12:05 PM (GMT 0)
As some might have read in a previous post of mine, I caught a nasty head cold a few weeks ago.  It seems to be going around. 

Immediately my immune system kicked in to attack this virus.  I got better after a week of nose blowing, stuffy head/ears, a minor cough that was productive etc.  

So......and this may be a dumb question:   .....if my immune system can fight off a cold why can't it fight Lyme?   

I was off ABX during this 'cold' in order to clear up some gut issues and a bit of yeast caused by Ceftin.   This took a good two weeks to resolve.

During this abx hiatus I was symptom free of Lyme at first.....but then a few symptoms started to creep back. 

Mini relapse I guess.  Started back on Ceftin with minor herx.  Symptoms are going away now. 

So where is my immune system for Lyme????  Is Lyme still so imbedded that it's still fooling my immune system? 

I don't know what to think!   confused   

The symptoms that crept back were muscle twitches,  random muscle pain and a horrible stiff neck/upper back pain.  Some brain fog too, which is still hanging around though it's tolerable. 

 

Posted 6/25/2011 6:30 PM (GMT 0)
HI Cat,
TBI's are rather unique in their ability to hide and to change forms in order to avoid eradication. A cold is a virus and can be over in a few days to a week - normally. There are other viruses that once contacted, never leave the body - like EBV (Epstein-Barr Virus), and in some this virus can cause continuing symptoms for years if they have a lowered immune response.

If a immune response is compromised enough, most typical infections like to just run rampant. With TBI's the immune system doesn't have to as compromised as someone with say AIDS, it just has to be slightly compromised. The tick-borne infections get introduced by an insect bite (as more than just ticks can now transmit these infections), and the first rule of order for them is to avoid detection. Detection equals death and they know it, so they burrow immediately into the walls of the blood vessels and go find other places to hide - like joints, the eyes, the digestive system, the brain and even inside the nerves!

By taking a break from the abx, the infections decided it was clear to come out to play again!! That's why symptoms returned, the infections were becoming active again, and why I encourage all to not take abx 'holidays'. It just gives the bacteria & that an opportunity to re-establish themselves. The timing of symptoms returning are according to when the infections start back up and reach a certain level of 'invasion' of our bodies.

So have I confused the matter sufficiently??? smhair
Posted 6/25/2011 11:17 PM (GMT 0)
No confusion at all Traveler !!    Great explanation!   Thank you !!

If only I hadn't gotten those gut/yeast issues and had to stop the abx! 

I don't feel I'm back to square one-- the ABX are doing their good work again--- I just hope my gut holds up for another couple of months. 

  

 

Posted 6/26/2011 3:07 PM (GMT 0)
Hey Cat,
Are you taking any probiotics? If you are and are still having these kinds of issues, then it's time to either add more or go to a better product that has more beneficial bacteria in it. Kefir is a great tasting and easy way to get a whole gob of beneficial bacteria. Even Dr. Joseph Burrascano, in his "Advanced Topics on Lyme Disease" tells us this about kefir - on page 28:
"This is a yogurt-like drink that is said to more permanently replenish beneficial flora. You only need to drink 2 to 4 ounces a day."

Although I love my kefir, I realize that not everyone is able/willing to make their own or can afford to buy it, as it can be rather expensive. Health food stores do carry some very high quality probiotics that will most likely help avoid future issues with yeast/gut issues.
Posted 6/26/2011 5:07 PM (GMT 0)
Hi Cat and Traveler,
It has been in this latest bout with my disease that I found and joined the Lyme community. I am not yet literate in all of the terminology. I am treating right now with a list of herb and supplements. The only meds I am taking for Lyme are Concerta, when I have to function and have bad symptoms and cymalta for inflammation and depression. I am doing my best to avoid toxins and processed foods, sugar and wheat. I slip up on caffeine pretty often. Can you describe me your daily regimen? What exactly is ABX? It feel like it takes me forever to get my day started.

I haven't done a full detox bath yet, I still need to gather some of the ingredients. I have been able to get in a epson salt and peroxide footbath ever other day. I will list my supplements on another post.

Take care and thank you both for your great work.

Oh yeah, what are all of your thoughts on saunas and steam baths? Exercise routines? I am trying to give my recovery structure and your input is greatly appreciated.
Posted 6/26/2011 7:22 PM (GMT 0)
Hey Trav,

I'm making my own fabulous Kefir now--- thanks to walkingafineline!   smilewinkgrin

Hi JT65.....  ABX is short for 'antibiotics'.   My daily regimen (besides juggling 2 antibiotics and Mepron)  includes drinking lots of Kefir and taking a super probiotic as well.  I detox bath 2 X week....do pretty hard exercise (tennis) for at least an hour 3-4 times a week.

I make sure I get a good 8 hours of sleep--- I avoid sugar, eat organic only-- but I'm not a complete health food nut. I do eat a cookie now and then! LOL

I drink coffee-- no alcohol though-- and still do smoke a few cigarettes a day.  Bad I know! 

By far, getting a good night's sleep is key for me.  Exercise used to do me in....but not any more. Now I seem to thrive on it.  

Never took anti-depressants.....only Ativan when I'm wired and know I won't fall asleep. 

I also get accupuncture which has helped to keep my stiff neck (Lyme symptom) at bay.   

I see my LLMD once a month to go over my abx protocol....and to see what should be done next.  

My vitamins-- when I remember to take them-- are C, D, B's, coQ10, fish oil, magnezium, alpha lipoic acid and a Chinese herb mixture that's all in one capsule and supposedly great for Lymies. 

That's about it!

 

Posted 6/27/2011 2:40 AM (GMT 0)
Thanks Cat,

I was smoking a couple a day until my last bout. I started in a fit of self pity early in the sickness, dumb idea. Neither smoking nor self pity helps me much. Still having one coffee in the morning and I am trying to avoid wheat and sugar. No alcohol any more, I will have champagne at some milestone like one year with no symptoms.This last was the worst round of symptoms I have ever had and I thought I had some bad ones. I haven't been on ABX since last fall when I did a PICC line. I am having blood work done next week to figure out my next move. It doesn't seem like the labs are up to speed one the co-infections though. In terms of Bartonella and Babiosies it doesn't seem as though the lab blood chemistry analysis or the medical community are any evolving as fast as the disease. How long do you and your LLMD think you will continue with ABX?

Thanks for the info, it all helps.
Posted 6/27/2011 2:43 AM (GMT 0)
Is continuous dosing of ABX standard or case by case with LLMD's?
Posted 6/27/2011 3:25 AM (GMT 0)
I think it's doctor by doctor. Some like to pulse certain abx....and others like to do continuous, such as mine-- plus adding and subracting as needed.

Often it's really a search for the right combo of abx--- and which way to treat any co-infections. Though I tested neg. for Babs, I am being treated for it on symptoms.

I hope to be off antibiotics once I have at least two full months symptom free. Right now I'm having some really solid good days that can last for weeks at a time. But there's always 'something' that still crops up to ruin it !!!

Like for example, today I had a bit of mild head pressure and my upper back was nagging at me.
Posted 6/27/2011 11:06 AM (GMT 0)
It's not bad ---considering the multitude of symptoms I've had over the last year--- or 20 years !   :-)

But sometimes I feel it's just going to stay this way--- can't get over the hump-- and I'm not sure I can stand the abx much longer. 

This morning the head pressure is gone and my back feels okay.....but now I have ringing in my left ear !!! 

Posted 6/27/2011 11:12 AM (GMT 0)
Hey Cat -- know just what you mean. I'm really close to feeling 100% but just can't seem to get over this last bit. Sure do want to stop taking antibiotics. It seems like they are causing more problems than they are solving.

Hope we get to the prize soon!
Posted 6/27/2011 11:21 AM (GMT 0)
Ditto !!!!

I read somewhere that it is the last jump to 100% that is the most difficult. I'm going to try to stick it out. Perhaps some people get to this point-- the dreaded plateau-- and give up--- only to relapse.

I'm seeing my LLMD tomorrow. I'm sure he'll say to keep going with the abx.
Posted 6/27/2011 5:50 PM (GMT 0)
Congrats on all of your progress, Cat!!! You're right from the years I have been on here reading posts and the 'research' I have done, that last jump to 100% does seem hard to do for some. Hang in there!! You are doing soooo well!!! And isn't the kefir just scrumptious???? smilewinkgrin

I have finally begone to make significant progress myself! turn I am down to only a handful & a half of moderate symptoms on average!!! Woo Hoo!!! I feel like I actually have a life now! I think the biggest improvement for me right now is that I can get out and sweat in this heat without getting heat exhaustion when it hits 80 degrees!!!!

JT- From what I have seen, continuous dosing & pulsing of abx is more of a doc preference, and then there are those LLMD's that do the continuous dosing, but will still at times have a patient pulse abx at times as well.

As for your coffee drinking - I'm a gotta have coffee type of gal myself!- Try switching to "1/2 caff." coffee. My acupuncture doc had me switch and said I can have 2 cups of 1/2 caff coffee each morning for the time being!! I'm really don't see myself doing without my coffee, but who knows?

All I am taking for m y Lyme treatment is herbs and supplements! So keep up the good work. I really do believe that the way to heal from long-standing chronic tick-borne infections (TBI's) is to build the body up first!! I did this with supplements, very gentle exercise when my pain levels were down enough, drinking 2 - 4 quarts of lemon water each day, eating as healthy as I could manage, and acupuncture.

You can do a full bath detox with just Epsom Salts and Peroxide as well! You should try it, I'm sure you will be better for it! Saunas are good. I live where the humidity is a factor and being outside, doing kind of light work and sweating has been very beneficial to my healing. Saunas are a little easier to control though!! So if you have access to one, try it. Please be aware that even just a few minutes in a sauna can produce quite a herx (*see below), so be careful and only spend just a couple of minutes in a sauna the first time to see how you do. Another thing that one should do is to take plenty of water to drink in the sauna with them. LD patients can dehydrate rather quickly.

As far as exercise, most LLMD's will recommend only light exercising, and for only a short amount of time. We deal with a lot of horrible exhaustion and muscle pain/cramps/spasms, and too much exercise at any one time, or when you really aren't up for it, will only make these worse.

*The Herxheimer reaction (also known as Jarisch-Herxheimer or Herx) occurs when large quantities of toxins released into the body as bacteria (typically Spirochetal bacteria) die, due to antibiotic treatment or rapid detoxification.


I do hope this helps a bit!!!
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