posted
My daughter started rifampin on Monday. This morning she has had several screaming fits already. While this is not exactly new behaviour for her, I haven't seen it this intense or often for a while.
Do you think this means the rifampin is working?
She hasn't really improved in 18 months of treatment, so I am hoping this is "the one".
Posts: 984 | From US | Registered: Dec 2007
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posted
Is she on pysch meds? Rifampin can cancel out certain pysch meds, requiring you to increase the dosage. If this is your issue, you should consult with the doc who prescribed the psych meds.
Posts: 991 | From California | Registered: Feb 2006
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Our daughter is being treated for lyme and bartonella.
She is on Biaxin and Rifampin. She is at 300mg of rifampin and will be going up to 600mg at some point. It seems like at one month into treatment at 1/2 dose, there are some slight improvements.
She just recently saw Dr. J and started treatment. She was treated with a low dose of Zithromax last summer by a different Dr.
Alot of her symptoms never resolved on the Zith, so we are hoping this new treatment plan works.
I hear good things about Rifampin......I am sure you were warned that Rifampin will turn the urine orange and boy it does.
I wish I had some answers for you regarding your daughter. Wishing her luck in this new treatment.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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posted
She is on 2.5 mg of Lexapro and 75 mg of Trazadone.
I just talked to her LL psychiatrist this morning, before she was up, and told him about the Rifampin. He did warn me that the new medicine could bring out her psych symptoms, and we should increase her Lexapro. I was thinking he meant herx and not cancelling out the Lexapro. I hope that is what it is.
I increased her Lexapro to 5 mg today but it was after some of this was happening.
Jane, my daughter is taking 300 mg of Rifampin and may go up to 600 also. She is taking mino with it. She has also had lots of zith with nothing happening.
It is encouraging that the rifampin is helping your daughter some after one month. Good luck to her.
Posts: 984 | From US | Registered: Dec 2007
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
I haven't taken Rifampin yet, but when I took Mino my psych/neuro symptoms went through the roof in terrible Herxing.
The Rifampin cancelling out the phsych meds and Herxing from Rif and Mino both might not be mutually exclusive. Mino was too hard for me, mentally - I just couldn't take it.
I would reckon she might have all 3 going on at once.
Good luck figuring this out, and good luck to both and your daughter while going though this process, jkmom. I wish you all the best.
tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
Both of my twin boys are currently on rifampin and biaxin. One of my boys has had psych symptoms increase on rifampin for the past 3 months.
However, the other had psych symptoms increase for about 2 months and then we saw gradual improvement. He used to have terrible rages and would kick and hit and throw things around. He was angry all of the time and would glare at me. Now, after 4 months of rifampin, he is pretty much back to his sweet self. He says he is happy now. Before he would tell me he was angry.
I think it is a good sign you are seeing an increase in symptoms. I did a post on rifampin with children a while back when we were getting started with it and got a lot of encouraging stories with rifampin. (If you do a search, my name was "tickbattler" without a space as it is now. I had to re-register b/c my pm box didn't work.)
Best of luck to you with this treatment. I have heard it is a good combo!
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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Cass A
Frequent Contributor (1K+ posts)
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posted
Watch out with the psych meds--they can actually CAUSE the very behaviors they claim to control.
Please truly look into the adverse effects of these drugs.
They can also become physiologically addicting, meaning that the person can't get off them without huge problems! Some people need a year or more to wean off a single psychotropic med.
Niacinamide can help lessen psychiatric symptoms, as can zinc.
I'd consult a good nutritionist.
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
I agree with CassA
I also believe the Herx can cause these symptoms as well.
And I would think the Trazadone would be increased before the Lexapro, as the Trazadone is more of a sedative.
5-HTP is the best way to increase Serotonin levels as it crosses the blood brain barrier and is a direct precursor to Serotonin. The Lexapro supposedly reuses the Serotonin that you have. Studies have indicated that SSRI's poop out because they re-use your Serotonin and after time, your levels drop so low that there isn't much to re-use. You will never have this problem with 5-HTP as you are constantly making new Serotonin.
You don't hear about 5-HTP because you can buy it OTC at a vitamin store and there is no pharmaceutical profit in it. I was surprised to talk with many health care providers including psychiatrists who had never heard of 5-HTP. I wonder what they are being taught in medical school as this is simplistic and basic science.
Always check with your Dr. before changing your meds, these are my opinions based on extensive research I have personally performed.
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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posted
We have tried 5HTP, inositol, diet, amino acids, etc. Finally, we decided to try the SSRI's again for some relief.
My other (non-Lyme)daughter and I have been able to get off Lexapro by going on the gluten free diet so I am a huge, huge believer in natural methods. Unfortunately, I've struggled for over 2 years to find the answer for this daughter, including a previous round of psych meds that caused side effects.
I really don't think the Lexapro is causing this raging. I think the Lyme is causing her psych problems to begin with and either the rifampin is stirring things up or she is just getting worse. I know the SSRI's can cause this, too, but it seems unlikely in this case because she has acted this way before and we just changed her abx.
I am going to treat it as a herx and stop the med today and see what happens.
Thanks everyone for your input.
Posts: 984 | From US | Registered: Dec 2007
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CD57
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posted
Sounds right in line with what I experienced on Rifampin, and was told to expect. Sounds like good news!
Posts: 3528 | From US | Registered: Apr 2007
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Shosty
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posted
I would definitely back off the antibiotics. Biaxin can also cause some psych. problems.
I posted elsewhere about the dangers of 5HTP, just for anyone reading the suggestion of trying it. It can have a bad backlash for 20% of us.
Why is your daughter on Trazadone? Our daughter hated it!
Doubling Lexapro is not a good idea unless you are absolutely sure that is what is needed. It will make getting off the Lexapro much harder.
posted
My daughter is 11. She is taking Trazadone to help her sleep. She has been taking it for about 3 months. I think it was taking the edge off from her anxiety and making her less likely to explode.
She's taking Lexapro for her OCD. Her LL psychiatrist said to start at 5 mg or less so I started her at 2.5mg. He has always said it would need to be increased a lot to work on her OCD. We are only at 5 mg now.
My other daughter was taking 20 mg of Lexapro, which is the highest dose and was able to get off over a year's period with no major problems.
She is still quick to explode after more than 72 hours with no abx.
Posts: 984 | From US | Registered: Dec 2007
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Shosty
Unregistered
posted
Sounds like the problem is not abx themselves then...teh suggestion to ramp up slowly sounds smart.
For OCD, you are right, a higher dose is usually used for Lexapro. But our child w/Lyme was extremely sensitive to it. If you were already intending to go up, then I hope it helps...
But beware of withdrawal...Just because one of your children got off easily, doesn't mean that your other one will. Some people have nightmarish withdrawals, and others don't.
Our daughter, who is much older, went up from 2.5 to 5mg and it added a couple of months to her tapering off, but she is now off without too many withdrawal problems.
It is good that you have a LL psych. We certainly never found one. Dr. J. told us to treat psych. stuff as primary problems while also doing the Lyme treatment, and you are doing that.
Is there any chance your child is bipolar, or having temporal lobe seizures, or some other neurological event (Lyme-related or not)? Does the Trazadone calm her? Has anyone mentioned an anti-convulsant?
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posted
I thought until recently that the Trazadone calmed her. Maybe it is just wearing out.
She has had a sleep deprived EEG to try to rule out seizures. It was normal but her doctor said that didn't necessarily rule them out. None of her many doctors are focused on that, though.
She hasn't been diagnosed with bipolar, but her local psychiatrist gave her a mood disorder-nos diagnosis. He is actually Lyme tolerant and says that the few Lyme patients he has seen are difficult to treat.
She has seen two other psychiatrists. One of them was an Environmental Physician/Psychiatris and said she would end up being diagnosed with bipolar based on her symptoms if we didn't address the underlying causes. He is the one that ordered the IGeneX test. Her other psychiatrist is LL (and out of state) and I'm guessing he believes her symptoms are Lyme related and wouldn't necessarily give her the bipolar dx. He said a lot of Early Onset Bipolar is Lyme but not all Lyme is bipolar.
She tried Topomax but that made her moods worse.
Her OCD is pretty constant, but this raging comes and goes.
Posts: 984 | From US | Registered: Dec 2007
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posted
I hope you will look into KPU and AI. Do a search here.These are really shifting me mind,body spirit,emotions.I was on many drugs yrs ago and all they did was make things worse.I went through hell getting off of them. Healing Blessings Joyce
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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Shosty
Unregistered
posted
Was Topamax depressing or activating? Lamictal seems to make for a much steadier mood (but again, there is a rare safety issue).
Dr. J. said that Lyme can trigger or worsen an already existing tendency toward a psych. illness. Bipolar illness runs in our family, so he thought that the Lyme had caused it to emerge in our daughter, when she was on abx. She was psychotic, in fact, on tetracycline. But when she got off the abx, she was no longer bipolar.
Now, many years later, some aspects of bipolar are emerging separate from the Lyme issue, so Dr. J. may have been right.
Our daughter, who is over 18, refuses SSRI's after some bad experiences w/withdrawal, and also because their effects seem to fade in 2 or 3 months.
However, the anticonvulsants have done a world of good for her. She is on them for migraines and temporal lobe seizures, but it also helps with mood (as long she stays on a really low dose).
I do think a really good neurologist might think about temporal lobe seizures w/your daughter. Abx and other meds can trigger those. Amitryptilene did that for our daughter. Again, we were told this meant an underlying seizure disorder, since meds only trigger something already there, if hidden.
And, again, many years later, she developed some seizure-type things that seem unrelated to Lyme.
So, the message might be to treat the Lyme, expect the symptoms to recede a bit, but also think about a longer term problem that might have been hidden, but is now out in the open with the abx.
Just want to repeat that this view came from Dr. J. in the first place. He did not attribute everything in its entirety to Lyme, but saw it as more complex than that. And he was right.
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posted
Topomax made her cry uncontrollably over nothing.
She took Elavil for a few years to help her headaches with no problems. Eventually, her headaches were not able to be controlled by Elavil.
It is so hard to know what is Lyme and what would be there any way. We are trying to approach it from both angles, just in case.
I will ask her psychiatrist about the anticonvulsants for her next.
I am trying to be optimistic and hoping it will all go away with treatment.
Posts: 984 | From US | Registered: Dec 2007
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
Just thought I would update you about what Dr. J said today with my son who is not improving on Rifampin. We just got back from a long day with appointments for my 3 kids.
While Rifampin did wonders for one of my boys, my one son is having behavior problems and his OCD is not improving. His physical symptoms are few and far between now.
He has been on Rifampin for 3.5 months. Dr. J said to try stopping the Rifampin to see what happens. Apparently in 20% of cases it can cause an increase in psych symptoms which is actually a side effect (as Shosty suggested above).
We are also going to take him to a female neuro-psych LLMD in Manhattan that Dr. J recommended. I hope this helps my son. The psych issues are so scary.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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Thanks for updating me on your son. I hope you can get some answers from the neuro-psych.
Dr. J's office told me to wait to give her more until her mood is better and then to start lower.
Today her mood is better. I am thankful to see that it was apparently caused by the medicine, one way or another, and not here to stay.
Posts: 984 | From US | Registered: Dec 2007
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Shosty
Unregistered
posted
JKMom I am sure it is a relief to see improvement after a few days off Rifampin. Trying to differentiate a side effect versus a "herx" is difficult.
In our child's case, the concept of a "herx" or even that abx could "stir" things up, ended up being dangerous. We now believe that she had a bad side effect or even allergy w/inflammation from the meds.
We were told by the LLMD to continue despite the psychosis, because it was a "herx," and I am still haunted by the idea that that may have harmed her brain long term. It took a couple of months of complete and utter psychosis to make it clear that she needed to come off and, as I said, within days she was perfectly fine.
Starting again slowly, you will be better able to evaluate whether your daughter can take it, and hopefully she will remain calm while the meds are also eventually up to a level that helps.
There are many different ways to view a situation. The "herx" model is only one of many. It is so hard for us as parents, to know how to view things that are so confusing and uncertain. I have lived with these feelings for 9 years now, and my heart goes out to you and to tick battler, and to your kids.
All I can say is that after all these years of problems, our daughter is a very special person, who has a depth and maturity far beyond her age, empathy for others, and a drive to do what she needs to do in life, no matter the obstacles. Your children will experience similar gifts in return for their suffering!
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