As before, in desperation, I turn to the people on this board for their recommendations and experience.
Daughter currently sees Dr. Jones. On Zithromax 200mg/daily since March 13th. Doxy 200mg/day five weeks prior to Zith. She is improving Slowly but Surely. As most know, Dr. Jones treats for 2 months after all symptoms resolve.
My daughter's symptoms are much better, only occasional aches and pains, headaches, and stomach aches. It is so hard to distinguish between abx related symptoms and lyme symptoms.
She has newly diagnosed food allergies (wheat, corn, soy) which I have seen from this board is not that uncommon with lyme. I read alot on here about this recently.
So we went to Dr S. B. in NY. Not that we don't trust or believe in Dr. Jones, just because of all the other issues with food allergies, GI Problems, and immune issues. We were looking for someone to put together the "whole" picture.
He suggested to stop abx immediately to figure out if GI symptoms would then subside. Said to stop for 5 days and call the office with any change in symptoms. Gave us a multitude of vitamins, minerals supplements ($350) to start this week to try to get immune system up to speed and heal the gut issues.
WE ARE SCARED!!! Should we stop the abx? Will we do irreversible damage if we stop abx prematurely??
Any experience with these docs and their approach that would help us sort out this confusion?? I know this is not cut and dry. I can't stand the thought of doing the wrong thing and causing more suffering for my little girl.
Thank heaven for this board!! Posted by mlkeen (Member # 1260) on :
During my first year of treatment when I was still very sick, I didn't take enough abx along on a trip. I was frantic and called my llmd. He said a few days would fine, 5 days was the max he ever wanted me without abx. He said that the bacteria reproduce slowly enough that it would be ok.
What really helped in addition to addressing food sensitivities, and perhaps the second doctor you are seeing is planning this, is cleaning yeast out of our bodies with diflucan after stopping abx.
I was scared to stop abx too, but it worked out alright for my son and I. We are doing well. We have been off abx since Oct 2005.
Posted by luvs2ride (Member # 8090) on :
If your daughter is developing gut issues which abx are the number one culprit, then not stopping the abx will be far more dangerous than stopping them.
If the gut goes, she will develop horrific problems. I often wonder if a lot of people who are taking heavy doses of abx for lyme aren't really suffering from gut damage. If so, abx are the worst thing they could be doing.
Once the gut becomes leaky, all kinds of yeast, bacteria, parasites, partially digested food, etc escapes into the body. I am not being melodromatic when I say this can become deadly.
If the gut is damaged, nothing you do to treat lyme is going to be effective because of all the other issues she will be dealing with. Worst of all, systemic yeast symptoms are very similar to lyme symptoms. Autoimmune disorders will develop from leaky gut.
If your doctor is concerned, you should be too. Stop the abx. Get the gut straight. Diet is critical!!
After you clear the body of fungus and bacteria that were never meant to be there, then if she still exhibits lyme symptoms go back to abx. But keep probiotics and a yeast free diet going as well as enzymes and amino acids to make sure the gut doesn't get damaged again.
Leaky Gut Syndrome is VERY SERIOUS!
Posted by lymedesign (Member # 8791) on :
luvs,
We are going to do the "gut permeability" sp? urine test tommorrow. We got the kit from the llmd today. Hopefully this will give us an idea if she has leaky gut issues. Any experience with this urine test?
Posted by Jill E. (Member # 9121) on :
I've done the leaky gut test many times, even years before Lyme, when I had gastrointestinal issues due to other issues. Leaky gut can be caused by numerous reasons - candida, celiac disease, other food allergies/intolerances, etc.
It's good to know where you stand because there are supplements you can take to help heal it. Also, it sounds like you are well on your way to identifying some of your daughter's food issues. (I've been gluten-free for several years - that's a fairly common issue).
I've had to go off of antibiotics for extended periods of time and I always panicked, because it is scary to see your Lyme symptoms worsen after making so much progress.
But even though I did backslide a lot in terms of symptoms, I did eventually make up lost ground once I got back on antibiotics. So in my case - and I can only speak for myself - it was a slow process to improve again, but I did not seem to have permanent problems from going off antibiotics.
But again, I know some people who relapse very quickly, in a matter of days. I can go longer. So it varies from person to person.
Good luck! Jill
Posted by david1097 (Member # 3662) on :
Stopping the abx for s few days does not really affect slow growing lyme, particulalry with zithromax due to its long half life. Many people (adults mind you, I don;t know about kids) pulse the abx (much shorter half life so it drops to very low blood levels) with no negative effect.
Its up to you and your Dr's what to do but If I was in your situation I would have no hesitation in stopping for a while if for nothing more than the common practice of pulsing and the general belief that lyme has a very long growth cycle as described in the ILADS guidelines.
Posted by LYMESCIENCE (Member # 9259) on :
This is a tough decision to make!! I would stick with Dr. J, as his experiences are vast with children. Tell him the concerns your facing, and I'm sure that he will be reasonable in the gut issues being a serious concern. But before we jump to conclusions as to the cause of anything, such as leaky gut syndrome, lets make sure we have all the facts. Its what I'd do with my kid.
Also, given that the only treatment for Lyme with evidence seems to be anti-biotics, I would be skeptical of trying to treat your child naturally. I would only go to that extreme if there were no clear bennifits to the antibiotics. However, in your case, that does not seem to be the case.
Remember, if the antibiotics are working, be very happy that she is responding, and stick with Dr. J, there's a reason people sing his praises, and that's because he rely's on good science, that which is available at least.
The reason to worry happens when these concerns are not communicated well with your child's doctor. However, if you are communicating them, and he ignores this issue, try to broach the subject again and let him know you feel this is a serious concern. As Dr. J seems to be a reasonable person, I think he will gladly try to figure something out.
If nothing is working when Dr. J tries to help this problem, then questions need to asked, and more serious questions.
Stick with where the science is, and the science concerns antibiotics. Fallon's study showed that people relapsed after discontinuing antibiotic therapy. The duration of therapy is not known but is though to be longer than 10 weeks for some cases.
Remember, improvement is a good sign, and in the end, I'm sure that whichever path you take, you'll stil be a good mother.
Posted by seibertneurolyme (Member # 6416) on :
A very tough call.
I know of Dr S.B. in New York although have not seen him as a patient. He does have experience with Lyme.
Based on hubby's experiences, the leaky gut test from Great Smokies has been a reliable indicator of how he was feeling from a G.I. standpoint.
His initial Lyme symptoms which still continue after 5 years were nausea/vomiting/dry heaves and Parkinsonsian tremor which has progressed to myoclonus and seizure-like episodes.
He really does have "Bell's Palsy of the Gut" -- dry heaves makes his face droop and the Vagus nerve is most likely the connection to the seizure-like episodes as well.
We have been to many alternative docs. Hubby went undiagnosed for 1 1/2 years. During that time he was diagnosed with chronic gastritis by endoscopy and found to have 3 different G.I. parasites including giardia.
Very strong herbal treatment for the parasites greatly improved his G.I. symptoms, but did nothing for the neuro symptoms.
I think most anyone on this board would agree that Leaky Gut is very real and very difficult to treat -- some might say next to impossible if your daughter remains on antibiotics. Unfortunately treatment for leaky gut generally takes months not days or weeks.
Maybe you could reach a compromise with the 2 docs -- do the testing and change her diet to elimiate allergens and possibly reduce meds and see if there is any improvement in G.I. symptoms.
If that approach doesn't work -- I have my doubts if she will ever become totally symptom free -- antibiotics alone are not going to make the G.I. symptoms go away.
The problem is you don't know if the G.I. symptoms are a direct result of Lyme or Bartonella in the G.I. tract which would not be improved by stopping antibiotics.
Maybe there is another option -- if the leaky gut test is positive I would bet that an endoscopy would show gastritis -- a biopsy could be sent to IGeneX I think for Lyme and Bartonella testing -- would have to find a doc who would agree to send the sample for you.
One piece of the G.I. puzzle for hubby is Babesia. It causes his Bilirubin levels to be elevated and this can and does cause nausea for him.
Hope you can figure out a workable solution.
Bea Seibert
Posted by bettyg (Member # 6147) on :
I've been off abx now for 1 month since my 4-24-06 LLMD out of state. See my post in general; I show ALL THE TESTINGS DONE, their results, & any aditional seets they give w/results. I know you will learn something since that is ONE of my new 20 diagnoses!
Posted by treepatrol (Member # 4117) on :
Gave us a multitude of vitamins, minerals supplements ($350) to start this week to try to get immune system up to speed and heal the gut issues. That I would do lotsa acidophilis and complexb vitamin,yogurt 3 a day,Mg,Cq10,etc
Its a tough call 5 days isnt to long though.
Iam surprized DR J dosent treat longer like 6 months after symptoms are gone.
Posted by luvs2ride (Member # 8090) on :
Lymescience,
According to my lyme literate doctor, there is plenty of science out there to show that since the onset of antibiotics, chronic illness has risen dramatically.
Furthermore, I have read plenty of articles that label Lyme as being "antibiotic resistant". Lord knows we don't have to look past this board to see evidence of that. The very fact you relapse whenever you stop abx tells you the abx are doing nothing more than put the lyme into a dormant state.
Meanwhile, abx can be very damaging to our bodies. These are young children with developing immune systems and organs. What is the longterm effect of so much destructive medication? Remember, abx destroy. And they don't just destroy the bad guys.
Lymedesign,
I do not have experience with testing for leaky gut through the urine. My doctor did a high resolution blood test and identified yeast in the blood. He said Leaky Gut is how the yeast escaped into my bloodstream.
That evidence coupled with the stomach burn I developed after 5 mths of Advil and the incredible improvement in joint pain I experienced when I switched to a vegan diet, convinced me.
I am working on healing the gut and like seibertlyme said, it takes months, not days.
Meanwhile, there are very good herbs that are effective against bacteria and fungus and are safe to take. Garlic is an excellent food to fight both bacteria and fungus. Do it under a doctor's care, as herbs are medicine too.
Contrary to what Lymedesign would have us believe, herbs are not unfounded and unstudied treatment. They were the medicine before abx and have 3,000 years of documented use.
Science is wonderful but it isn't God and it isn't infallible. It isn't even always unbiased.
Posted by TheCrimeOfLyme (Member # 4019) on :
It won't hurt to take a five day break. I switched to injections ( which may or may not be plausible with a child) because my stomach became leaky and I was in BAD shape.
Keep in mind, when she does go back on that ALOT of antibiotics ( believe it or not) have CORN in them. You have to tell the pharmacist to give you the brand without it. I found this out through my four year trial and error with lyme ( and alot of food sensitivities due to abx)
Posted by lou (Member # 81) on :
I think we should all be careful not to be practicing medicine. I personally would not have the nerve to tell a person that abx are bad for their child and they should do herbal treatments instead.
And if you switch from one doc to another and change the treatment without telling him, this is a disservice to the doctor. Many docs would tell you to choose, but not try to follow two different kinds of treatments at the same time. And could decline to be involved in further treatment.
I think you have got to tell Dr. J before you ask for anymore treatment from him. Maybe you decide to try this alternative route and like the results, then you go with plan #2. Or if you go back to Dr. J, then tell him what you did. Maybe he won't mind, or maybe he will suggest that since you are embarking on a different type of treatment than he provides, that you may not be a suitable patient there anymore. When I say you, I mean your daughter. Got to be honest with doctors if they are going to be held responsible for the results.
5 days is not much in the bigger picture. I found that doxy stayed in my system for about ten days after I stopped taking it. This was apparent at the time by reaction to sun exposure.
Posted by luvs2ride (Member # 8090) on :
Lou,
I am no more practicing medicine when I suggest herbs than you are when you say stay on abx. I clearly state this should be pursued with a doctor.
There are more legitimate options out here than just toxic drugs. This child may have a damaged gut and the "doctor" says lay off abx awhile. Seems to me, when you tell her to ignore this advice, you are the one practicing medicine.
I know abx can heal and I am not 100% against them, but herbs heal too. Herbs heal without the toxic side effects although herbs can also be poisonous as well and that is why a trained doctor needs to be in charge.
Another very good alternative that is 100% safe and can even be done in conjunction with abx is homeopathy.
Under a certified homeopath who is also a medical doctor, I eliminated all my lyme symptoms except the arthritis which after 5 mths increased. I am now pursuing other causes to arthritis such as leaky gut. Unlike many people's lyme symptoms which return when they stop abx, my symptoms never have returned.
This is an excellent avenue to explore for anyone needing to get off abx and especially for a child.
Posted by lymedesign (Member # 8791) on :
Thanks to everyone for their advice. We are all different and I would expect varied opinions from each of you because after all we are individuals. I am conflicted about this as much as the differing opinions here. My bigggest problem is not knowing if the lyme has been treated sufficiently. When do you stop abx???. What markers do you look for?? Do you wait for complete 100% absence of symptoms??
I think I am going to wait and see the results of the many tests that were done and sent to various labs concerning the GI issues and overall functioning of her system. I too, feel better responding to "scientific" testing before making a decision. Although, here I go contradicting myself again b/c most of her lyme/coinfection blood work came back neg. But we know how that goes!!
I think that perhaps we need to do more immune support related vitamins, minerals and supplements.
At this point, I am not interested in "the alternative" approach to lyme because I don't think we have given the abx enough time. It was suggested that maybe orals should be avoided and we should look into IV therapy which would be easier on the stomach. However, like I said above, maybe we should be doing more to help the body nutritionally.
I repect everyone's opinion on this board. There is so much knowledge gained here by reading these posts.
Due to respect to any doctor currently treating someone, as lou suggested, I would not make a decision without first consulting them.
Posted by BOEJR (Member # 1734) on :
Hi Lymedesign,
Have you considered augmenting her therapy? I am a firm advocate for Hyperbaric Oxygen. There is evidence to prove that HBOT can be beneficial in facilitating the abx crossing of the blood brain barrier.
Here is the Hyperbaric Lyme Protocol as per Dr Fife.
Furthermore it will boost the immune system and alleviate the toxicity that cause the the gut issues. As a person who has done antibiotics both oral and IV, as a lyme sufferer and a nurse.I will tell you that if she has allergy or sensitivity issues you should ask your physician to consider adding the therapy to her regimen.
You should discuss this and any other remedies with your doctor before making any changes to your childs therapy.
Hope this helps
Warmly,
Julia
Posted by LYMESCIENCE (Member # 9259) on :
Great post. I agree, as little science as there is, there is some science specifically concerning Lyme Disease and HBOT. I certainly think that its an idea worth considering. Also, it does improve immune function. Good idea!
Posted by LYMESCIENCE (Member # 9259) on :
IV is certanily a good consideration. According to studies from Fallon, those with "chronic" lyme bennifit most from this form of therapy. Also it is easier on the GI because the antibiotics are not being processed, but rather are simply obsorbed.
The down side to IV is higher costs, and possible infection through the Central Line.
The bennifits are using stronger drugs against Lyme, and other drugs which can't be taken orally, and these are the kind that cross the Blood Brain Barrier, which don't have to be taken in large doses when given IV.
Posted by seibertneurolyme (Member # 6416) on :
While easier on the stomach than oral antibiotics, IV antibiotics can still disrupt G.I. bacteria.
Dr B definitely stressed this point with hubby. We were already aware of this unfortunately.
Hubby did not get the ususal yeast infection from IV Rocephin, but an overgrowth of Klebsiella and other ammonia producing bad G.I. bacteria which caused hepatic encephalopathy -- not a fun 5 months to get this under control. Lots of confusion and increased seizure-like activity plus somnolence were the primary symptoms.
Bea Seibert
Posted by SForsgren (Member # 7686) on :
Other than the initial post, I have not read any of the other comments but I will provide my thoughts. The reproductive cycle of Borrelia is rather long. If someone stops ABX and gets an immediate setback, you think coinfections. If it is Bb, it generally will take up to 3 weeks to have any notable changes. Though I can understand the hesitation and am not suggesting to stop the ABX, I am of the opinion that 5 days would likely not be a major problem long-term. Good luck
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