posted
I spend a lot of time on here reading and reading. I just want to thank everyone for their posts...so helpful. So here is my first question:
1. I thought we caught my daughters Lyme and co rather quickly (2 months after the bite), but her symptoms just keep lingering on. I thought that it would only take a short while to getting her to feel better, but that was back in October 2009. I don't know if anyone can answer this but what is taking so long to bet her better.
2. Her llmd started her on tindamax in January. She is supposed to take it 10 consecutive days every month...the first month we started on 250mg. She had a few rough days, but it was tolerable. The doc said if she could handle that we could try to double the dose. So we started out on the same dose and after a few days doubled up and she herxed really bad. My question is do I lower her back to the original dose or keep it doubled up. I feel like the more she herxes the more bugs she's killing off...am I right or no?
3. How do we know we don't need the tindamax anymore. Is it when she doesn't herx from it? How do you know when your antibiotics should be switched around?
4. She hasn't been taking her probiotics the way she should and I can't believe she hasn't had any yeast issues but so far none. Will it eventually catch up to her or do some people just have no issues?
Sorry for all the question, but anyone who has any thoughts I would love to hear. Thanks and everyone be well.
Posts: 107 | From New Jersey | Registered: Nov 2009
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TF
Frequent Contributor (5K+ posts)
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Are you saying that starting in January 2010 (over a year ago) she began taking tindamax for 10 days each month and that is all she has ever taken?
I hope this is not the case.
Also, how old is she?
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I'm sorry I guess I should have given more history. She will be 19 in two weeks. She is very tiny and petite only weighs about 95 pounds.
She has taken different antibiotics but currently she is taking Zithromax and minocycline. She also takes zoloft for anxiety issues. She was diagnosed with bartonella along with the Lyme.
She just started the tindamax in 2011.
Posts: 107 | From New Jersey | Registered: Nov 2009
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Posts: 107 | From New Jersey | Registered: Nov 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
1. What is taking so long to get her better?
Well, there can be a number of answers to that question. One possibility is always that she is not with a very good doctor and so the treatment is inadequate. Many doctors treat lyme, but only a few know enough to get rid of it for a person.
Another possibility is that she is doing things that will delay or even prevent her recovery--like drinking alcohol, smoking, eating sugar and other carbs, etc.
Another possibility is that she actually has had lyme for much longer than you think and that finally she got a bite that put her germ load beyond what her body could handle and so she became symptomatic. If that is the case, it often takes a year or more to get rid of the disease, seeing that you have had it for a while.
Another possibility is that she has a number of other coinfections and, until they are adequately treated, the lyme cannot be destroyed. Nearly everyone with lyme gets a few other coinfections from that same tick. As long as you have an untreated (or inadequately treated) coinfection, it helps the lyme remain in your body.
My doc told me that lyme is like AIDS in this way: it compromises your immune system. Some believe that babesiosis also does this. So, if either one of them is still in her body, it is continuing to weaken her immune system and she cannot, therefore, get rid of her diseases.
I must say that you should have noticed a lot of progress in one year of treatment. If you have not, then it is time to look for a doc with a lot more lyme expertise. It normally does not take years to get rid of this disease when caught early, even with a few coinfections.
2. Do exactly what the doc said. If your daughter can handle the herx on the double dose, then keep it doubled. She is old enough to decide and tell you if she can handle it. You don't want her suffering to the point of going crazy. But, she has to realize that some bad days will also be necessary. She is old enough to know when enough is enough.
3. You know you don't need the tindamax anymore when you don't herx from it and you don't notice any improvements either.
You know it is time to change antibiotics when you no longer herx from them and you are not noticing any further improvements either. This is called "plateauing."
If your dosages of meds are not very high, you won't herx and you will only get a set amount of improvement. I believe in the Burrascano lyme treatment guidelines--high dose combinations of antibiotics to knock out these diseases.
Other doctors believe in the "low and slow" method--low doses so the patient doesn't herx, don't try to kill the germs but instead just use the meds to keep them from multiplying (using bacteriostatic doses, as Burrascano calls it), and try to build up the patient's immune system so that eventually it will be able to kill off the germs itself.
It is best to always find out from the start what protocol a doctor uses. If it is low and slow, your treatment will take a long time. If it is Burrascano, I have seen many people done with treatment in a year. There is a lot of variability, of course.
4. When I went to a doc who didn't know enough to cure me, he had me on a high dose of only one lyme antibiotic. I was on that dose for 2 years. He never told me about yeast. So, I wasn't on an anti-yeast diet, and I didn't take any kind of probiotic. I was totally in the dark!
Still, I didn't get a yeast infection until well into my second year of his treatment. When I got it, he didn't know what it was. I had to suffer while he tried to treat me for irritable bowel, etc. Finally, I decided it had to be yeast and told him to give me Diflucan and I got rid of it.
So, all that to tell you that it can take a while for the patient to get their first yeast infection. Some meds will do it very quickly (like flagyl). But, for many, they can eat what they want for a year or more. Then, they get hit and from that time onward, they have to be very careful with probiotics, anti-yeast diet, etc. If they cheat, they get yeast again.
So, the best way is to ward it off as much as possible by taking good probiotics and watching the diet. Once she gets yeast (if she does, and it is probably just a matter of time), then she will likely keep dealing with it until the end of her treatment. At the end, you can finally knock it out totally. As long as you continue to take antibiotics, it is difficult to totally get rid of the yeast.
I have never heard of a lyme patient who got rid of lyme without having ANY yeast episodes. The high dose combos of antibiotics are just going to cause yeast and that is it.
Hope this helps.
Posts: 9931 | From Maryland | Registered: Dec 2007
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4. When I went to a doc who didn't know enough to cure me, he had me on a high dose of only one lyme antibiotic. I was on that dose for 2 years. He never told me about yeast. So, I wasn't on an anti-yeast diet, and I didn't take any kind of probiotic. I was totally in the dark!
Still, I didn't get a yeast infection until well into my second year of his treatment. When I got it, he didn't know what it was. I had to suffer while he tried to treat me for irritable bowel, etc. Finally, I decided it had to be yeast and told him to give me Diflucan and I got rid of it.
So, all that to tell you that it can take a while for the patient to get their first yeast infection. Some meds will do it very quickly (like flagyl). But, for many, they can eat what they want for a year or more. Then, they get hit and from that time onward, they have to be very careful with probiotics, anti-yeast diet, etc. If they cheat, they get yeast again.
So, the best way is to ward it off as much as possible by taking good probiotics and watching the diet. Once she gets yeast (if she does, and it is probably just a matter of time), then she will likely keep dealing with it until the end of her treatment. At the end, you can finally knock it out totally. As long as you continue to take antibiotics, it is difficult to totally get rid of the yeast.
I have never heard of a lyme patient who got rid of lyme without having ANY yeast episodes. The high dose combos of antibiotics are just going to cause yeast and that is it.
Please listen to TF!!! It is VERY hard to get rid of yeast once you get it. PREVENTION is key. I've treated yeast longer than I ever treated Lyme.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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1. I know she is delaying her progress when it comes to certain things you mentioned. I know she isn't drinking alcohol, but I know she is smoking pot. She claims that it helps with the symptoms. Also her diet is horrible. She has tried to cut back on caffiene, but sugar and carbs are another story. It is so frustrating that 19 year olds think they know everything.
She was also treated for Bart. She was treated for about 10 months for Lyme and Bart and she was almost symptom free. They weaned her off the meds (which now I know was too soon to do). Then she went off to freshman year of college. She partied, ate all the wrong stuff, didn't sleep enough and basically didn't take care of herself.
Here we are now her dr suggested she take a medical leave of absence to get herself well, but it seems that she has symptoms every day all over again. So I guess we are starting at square one again.
Why don't they ever listen??
Posts: 107 | From New Jersey | Registered: Nov 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
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Burrascano says you treat for 2 more months after you are symptom free. So, why did the doc wean her off of meds before she was symptom free?
You have got to find out what protocol he follows. That tells you his philosophy and how she will be treated. If you don't agree with the protocol, you find a doctor whose protocol you agree with.
I tell people to call the doctor's office and ask if the doc follows Burrascano if that is the protocol they want. Also, ask the doc himself at the first appointment. Evaluate the answer you get. Lots of docs SAY they follow Burrascano, but they don't really.
This doc sounds like he has modified the Burrascano approach to something else since he didn't treat her for 2 months past the symptom free point. You should be able to call your state lyme support groups and ask what protocol he follows and also get names of docs who follow Burrascano.
Burrascano also says that if the patient does not get adequate sleep every night, they will be a treatment failure.
Here is a quote:
"There are three things that will predict treatment failure regardless of which regimen is chosen: Noncompliance, alcohol use, and sleep deprivation. Advise them to take a break when (or ideally before) the inevitable mid afternoon fatigue sets in (napping is encouraged)." (page 17)
"If treatment can be continued long term, then a remarkable degree of recovery is possible. However, attention must be paid to all treatment modalities for such a recovery- not only antibiotics, but rehab and exercise programs, nutritional supplements, enforced rest, low carbohydrate, high fiber diets, attention to food sensitivities, avoidance of stress, abstinence from caffeine and alcohol, and absolutely no immunosuppressants, even local doses of steroids (intra-articular injections, for example)." (page 20)
"CERTAIN ABSOLUTE RULES MUST BE FOLLOWED IF LYME SYMPTOMS ARE TO BE PERMANENTLY CLEARED:
1. Not allowed to get behind in sleep, or become overtired. 2. No caffeine or other stimulants that may affect depth or duration of sleep, or reduce or eliminate naps. 3. Absolutely no alcohol! 4. No smoking at all. 5. Aggressive exercises are required and should be initiated as soon as possible. 6. Diet must contain generous quantities of high quality protein and be high in fiber and low in fat and carbohydrates- no simple carbohydrates are allowed. Instead, use those with low glycemic index. 7. Certain key nutritional supplements should be added. 8. COMPLIANCE!" (page 27)
So, I think he really means what he says.
Also, the Burrascano protocol is a 4-pronged approach:
antibiotics supplements and herbs diet, and exercise
It takes all 4 to get well. Does her lyme doctor use all 4?
If your daughter is not taking the required supplements, then she is again hampering her recovery. Diet, sleep, supplements, no smoking, etc. (Is she being sure she takes the meds as prescribed, or is that slipping also, etc.)
At 19, it may eventually be necessary to let her learn the hard way.
Like Grandma used to say, "If you can't hear, you'll have to feel."
Who is wasting the money on doctors, meds, probiotics, and supplements? You?
If so, how long do you keep doing your part even though she isn't doing her part.
However, I am still concerned that the doc stopped the meds too soon. That was a bad move there. Have to do something about that part.
In Pam Weintraub's book "Cure Unknown" she says that when her son was in college, he was not fully following what Burrascano told him to do. So, one day, Burrascano told him to either get with the program or quit wasting his time!
You may be able to arrange such a conversation between the doctor and your daughter. If you are footing the bill, you have lots of leverage. She has none.
Posts: 9931 | From Maryland | Registered: Dec 2007
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