posted
Hi, I am on an abx break right now for the past 18 days. I was symptom-free for the first 14 days or so.
Although I am still feeling very good, the past 4 days I have had some symptoms come back. These are my usual suspects - muscle aches in my legs and sometimes in my arm.
My next appointment is at the end of the month. Since I ran out of meds around July 1st, I would have been off abx for about 1 month by my next appointment.
Is that enough time to figure out whether I am going to backslide? Or should I stay off the med for 2 or 3 Lyme cycles to see if I worsen?
I am beginning to think that my muscle aches are permanent and no amount of abx is going to make them go away.
Thanks in advance for your thoughts. Sorry for the rambling post.
Posts: 100 | From USA | Registered: Sep 2010
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posted
Hi, I forgot to mention that I always have about 15 to 20 symptom-free days in a month. This has been a consistent pattern for me for the past few months.
June was pretty good with 20 symptom-free days.
Posts: 100 | From USA | Registered: Sep 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You need to treat until you are totally symptom free, then treat at least 2 more months if you have had lyme for at least a year.
That is what Burrascano recommends.
If you stop while you still have symptoms, you will definitely go back to your pre-treatment state or worse.
Did your doctor tell you it was time to stop treatment?
Some docs check a person's CD57 level as a way of helping to determine whether or not they will relapse when treatment is stopped. You want a high CD57 score.
Have you discussed the sore muscles with your doc? Many people with lyme are low in magnesium and taking lots of mag helps the sore muscles considerably.
Why not start taking more and more mag, a number of doses throughout the day, until you get diarrhea from it. Then, lower your dose slightly so that the diarrhea stops. Stay on that high dose for a number of weeks and see how the muscles feel.
Hope that works for you. Many, many on this board have found relief from terrible muscle pains by taking loads of mag.
From Burrascano, page 28:
"MAGNESIUM (required)
Magnesium supplementation is very helpful for the tremors, twitches, cramps, muscle soreness, heart skips and weakness. It may also help in energy level and cognition. The best source is magnesium L-lactate dehydrate (�Mag-tab SR�, sold by Niche Pharmaceuticals: 1-800-677-0355, and available at Wal-Mart). DO NOT rely on �cal-mag�, calcium plus magnesium combination tablets, as they are not well absorbed. Take at least one tablet twice daily. Higher doses increase the benefit and should be tried, but may cause diarrhea. In some cases, intramuscular or intravenous doses may be necessary."
page 6:
"Magnesium deficiency is very often present and quite severe. Hyperreflexia, muscle twitches, myocardial irritability, poor stamina and recurrent tight muscle spasms are clues to this deficiency. Magnesium is predominantly an intracellular ion, so blood level testing is of little value. Oral preparations are acceptable for maintenance, but those with severe deficiencies need additional, parenteral dosing: 1 gram IV or IM at least once a week until neuromuscular irritability has cleared."
I treated until I was totally symptom free. Then, 5 months more. I completed my treatment 6 years ago and I have never relapsed. I had undiagnosed lyme (plus babs and bart) for at least 10 years before getting treatment.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
TF, Thanks so much for the reply. Yes, I have told my doctor about the muscle pain but I will bring it up again next time.
No, my doctor hasn't told me that it is time to go off treatment completely. However, I am off abx this month based on my doctor's recommendation.
My CD57 has been pretty low (around 20 or so, I think). But there seems to be differing opinions on this forum about the validity of using that as a criteria for stopping treatment. "Go by how you feel and not by a number" is what somebody told me on this forum once.
Is a test for Magnesium levels part of the Complete Blood Count? I've had a few of those in the last 6 months and they have all looked ok.
I will ask my doctor about checking Magnesium levels at my next appt.
Posts: 100 | From USA | Registered: Sep 2010
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TF
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posted
See the quote above (p. 6 of Burrascano). Magnesium blood level testing is of little value according to Burrascano.
Just do the magnesium experiment I outlined above and you will know right away if it is a mag deficiency.
The Burrascano Guidelines are here for your reading:
From what I describe, does it sound like an active infection to you?
Anybody else have any thoughts on what I should do?
Posts: 100 | From USA | Registered: Sep 2010
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desertwind
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posted
I was off abx.s for 4 months. Initially I felt GREAT until I began a very slow and subtle backslide OR was re-exposed.
Small things that I made other excuses for ended becoming big issues again. I did not want it to be lyme coming back but my denial got me sicker. Now I back on and feeling better.
Hindsight.....During abx breaks I will now get right back on abx. at the first sign of stuff coming back.
Personally I would not wait till it gets too bad.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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posted
Desertwind, thanks for the reply. Yes, I think my doctor will want me to go back on abx at the end of the month.
While I am very grateful for the fact that I am feeling better now than I did last Fall, the lack of progress of late is very frustrating.
I know that there are many success stories on this board but I am beginning to doubt whether I will ever be 100% "symptom-free".
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TF
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posted
I don't believe in taking antibiotic breaks if they are not needed for some other reason like yeast overgrowth in the intestines.
I got rid of lyme and company by taking antibiotics continuously, the Burrascano way. And not stopping them until I was totally symptom free.
The doc is the key to getting rid of this disease, my friend. If your current doc can't do it for you, then I suggest you find a better doctor.
I had a total of 3 lyme doctors. When I figured out that my second doc didn't know enough to cure me, I switched to the Burrascano type doctor. He polished off my lyme disease in 2 months, then went on to treat me for coinfections. I was done in 13 months with him, and I was totally symptom free the last 5 months.
It takes high doses and combinations of antibiotics to get rid of lyme. Then, different meds to get rid of each coinfection.
If you have not been treated for babs and bart, then that is why you can only stay symptom free for 14 days. That is the sign of an untreated coinfection. Lyme is more slow growing and takes at least 30 days to start to cause symptoms again.
Does your doc follow the Burrascano Guidelines? Did he test you through Igenex for all coinfections (babesiosis, bartonella, ehrlichia) ordering at least 2 different tests for each?
Does he have you taking the required Burrascano supplements? Magnesium is one of the required supplements. All lymies need lots of mag.
In addition, did he tell you the Burrasacano exercise requirement? 1 hour of weight lifting every other day.
My doc said I would never get well until I did the exercise requirement. Read it in Burrascano, p. 31.
You don't say what part of the country you are in. If you want to send me the name of your lyme doctor, I'll tell you if he is considered one of the best or not.
Changing doctors can make all the difference in the world.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
TF, thanks for the reply. I live in the pacific northwest and here we don't have the luxury of having many LLMDs. Having said that, I have heard good feedback about my doctor (who is affiliated with ILADS) from others on this board.
My doctor believes in the slow-and-steady approach and might be a bit on the conservative side in terms of using really high dosages of medications.
I wasn't tested for anything other than Borrelia (which I was tested with Igenex).
I took A-bart for a couple of months but it didn't do anything for me - no herxes, no improvements. I am currently on Zithromax for treating bartonella. I don't really have any of the symptoms associated with babesia and so my doctor didn't consider treating me for it.
Posts: 100 | From USA | Registered: Sep 2010
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desertwind
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posted
The only way I can tolerate tx is with antibiotic breaks. My LLMD takes a gentle approach as well and this is the best that I have been in 7 years. Not everyone does well on high dose/constant abx.s.
I need breaks to detox as I cannot detox well at all. I also pulse when needed.
During your time off focus on alot of detoxing and repairing your gut if that is an issue.
Wasn't it Dr. B. who cured himself by doing frequent abx. breaks? Saw that somewhere..
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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TF
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Zith is not the drug of choice for bartonella. In fact, this is the first I heard of it as a bart med in my 7 years of being involved with this board. You may want to read what Burrascano says about treating this disease.
Also, I had no noticeable symptoms of babesiosis, but yet I tested positive for it through Igenex. They saw it in my red blood cells. As you can imagine, that was valuable information for my lyme doctor to have.
So, I would say your doctor doesn't follow the Burrascano Guidelines. Otherwise, he would have tested you through Igenex for everything at the first appt. He also would have you on magnesium and the other supplements.
I got well by going to a doc who follows Burrascano, so that's the protocol I believe in. I also saw it cure 3 of my friends.
The way Dr. Burrascano cured himself WHEN ALL ELSE FAILED, was that he stopped antibiotics and let himself get very, very ill with lyme. Then, he hit the lyme with the meds again. He did that 3 times.
This was his final attempt to cure himself after following his typical treatment which is non-stop antibiotics as described in his lyme treatment Guidelines document.
So, as I understand it, this was a last ditch effort. He also had Pam Weintraub who wrote "Cure Unknown" do the same thing when her case of lyme was not going away despite lots of treatment. This is not typical Burrascano lyme treatment.
So, Burrascano does not order frequent antibiotic breaks.
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desertwind
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There are alot of people who fall into the "When all else fails" category including myself.
This is not a one size fits all disease and it is possible that the Dr. B. protocol does not work for everyone. There needs to be variations to the guidelines as we are all different and will respond differently.
My LLMD did not test via Igenex either (he would have if I wanted but we both felt it was not necessary given my chronic case) yet he still treated me and was the only LLMD that has gotten me back to 75- 95% functioning after 7 years of being ill.
My LLMD believes in frequent abx.s when someone has an inability to detox and in more chronic cases where one cannot tolerate Flagyl. The breaks are designed to trick the ketes out of hiding. Obviously not the best thing for everyone but for some..yes.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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posted
I am also a fan of abx. breaks for pretty much the same reasons as posted by desertwind. I was in the "when everything else fails" category as well.
It was not until I began taking breaks based on how I was feeling did I get better.
I could not tolerate any sort of cyst buster so we used the pulsing as a way to break through. Worked and continues to work for me.
But as desterwind already said it does not work for everyone and only specific cases.
Posts: 151 | From North East | Registered: May 2011
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posted
TF, I haven't looked recently at the Burrascano guidelines but I could have sworn that he says that Zith is an alternate choice for treating Bart in case problems with drugs like Levaquin.
Also, I am pretty sure Zith is the first choice for people under 18, according to Burrascano. And although I am not under 18, I believe usage of Zith is consistent with my doctor's philosophy of using the mildest drugs possible.
But I am going to ask about something like Rifampin next appt.
Posts: 100 | From USA | Registered: Sep 2010
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TF
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Zith is only mentioned in Burrascano for those under age 18 because they cannot take drugs in the Levaquin family.
I think it is a good idea to ask about rifampin and the other adult alternative meds for bart. As I said above, you are the only adult I have met who is using zith for bart.
People have difficulty getting rid of bart and they are using the various adult meds. I took Levaquin for 30 days and it did the trick for me. My doc followed that up with Bactrim DS which got rid of my babesiosis and also hits bart.
You said above that you are frustrated with your lack of progress of late.
This lack of progress may be directly related to your doctor's treatment philosophy. Since you understand his philosophy, you can decide if you ever tire of it and want to try something that may bring quicker results.
I wish you the best.
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