posted
Anyone have increased sound sensitivity on rifampin?
I was on the phone the other night with my friend and I had to lower the volume. Tonight I tried to watch TV but could not stand the sound from the TV. We were watching a very quiet show.
Is this a herx or an adverse reaction to the medicine?
-------------------- Female. Misdiagnosed with fibromyalgia for six years. Started treating Lyme in 2014. IgG positive for mycoplasma and clinically diagnosed with bartonella. Also have Hashimoto's thyroiditis. Posts: 32 | From New York | Registered: Oct 2014
| IP: Logged |
posted
For light sensitivity, you could try drinking mangosteen juice, an anti-inflammatory juice. I drink it daily and it stops all my Lyme eye symptoms. I like the Mango-Xan version as it's the most tart. You can find it in healthfood stores and online.
Posts: 13171 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
Mangosteen is an expensive, sugary fruit juice which I have noticed seem to be repeatedly promoted by some on this board. The company that makes it does sponsor a marketing program. Perhaps that's what's going on.
It is not a treatment for any medical condition, and certainly not Lyme disease (ask your doctor).
If you like the taste and want to spend the money to drink it -- fine, that's your choice.
If you are having new-onset neurological issues since starting Rifampin, I suggest you consult with your pharmacist and/or your doctor.
-------------------- Please consult your physician before making any changes to your diet, medications, or supplements. I am not a healthcare professional and nothing I write should be construed as medical advice. Posts: 166 | From USA | Registered: Dec 2014
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS (sound sensitivity) -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
Sonatina, I am not addressing use of rifampin. I'm responding to the poster's mention of having greater light sensitivity.
None of us can know what's going to help someone, even oneself - it's an experiment to try remedies.
So for me, drinking mangosteen works to stop my light sensitivity. It's because it has 43 xanthone compounds in the rind, which is ground up and put in the drink. These compounds scarf up free radicals and thus reduce inflammation.
Within 24 hours of drinking it the first time, all eye problems greatly diminished - light sensitivity and floaters of 25 years, eye muscle pain of one year, and blurred vision of about two months, which was the symptom that got me going.
It was a health professional who informed me about mangosteen juice. Health providers do know about the drink and recommend it to those they think may benefit from it. My Lyme doctor agrees.
Some mangosteen drinks are pure, like Xango is, and I've seen others recently too in the store. But the pure ones give me a headache, even though others swear by them. So I go with the one listing the least sugar content.
No company is inducing me to market the drink. I report it because it helps me. I choose to buy it because it helps. The Mango-Xan drink I buy at the healthfood store is not expensive - I get it for $20 bucks a bottle which lasts me about a month.
Please have some respect here for those who are benefiting from a remedy. We have the right to report about what's working or not working for us, but we do not have the right to prescribe for others as we are not doctors here.
Posts: 13171 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
Robin123, With all due respect, I have read dozens of past posts you (and LymeToo) wrote extolling the benefits of this fruit juice and suggesting places where people can find it to purchase. Anyone on this board is free to do a similar search, and can form their own conclusions.
If you have no relationship with any company that makes or sells a mangosteen juice product, nor any stock in the company, and you do not participate in any marketing program designed to promote the product on web sites, and you are not assisting or supporting anyone else who does have a financial relationship with this product or company, feel free to explicitly say so.
My personal opinion is that mangosteen is an overpriced, sugary fruit juice that is unlikely to help any medical condition. But if someone likes to taste and doesn't mind spending the money, that's up to them.
If there is any suggestion/implication that it might have bioactive anti-inflammatory chemicals that survive digestion, get absorbed in high enough concentrations to have a medical effect, penetrate the eye tissue and/or ocular nerves, and reduce inflammation there, I can only say that I am highly skeptical.
Omega-3 fatty acids, on the other hand, have been repeatedly shown to have anti-inflammatory properties. But will they affect light or sound sensitivity? I doubt it.
Light sensitivity sounds like a neurological issue to me, that should be brought to the attention of the treating physician.
That's all I have to say on this topic.
S.
-------------------- Please consult your physician before making any changes to your diet, medications, or supplements. I am not a healthcare professional and nothing I write should be construed as medical advice. Posts: 166 | From USA | Registered: Dec 2014
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I know it can sound like someone is promoting an item when it works for them, I don't think Robin has a financial interest in mangosteen, it's just something that has worked for her.
I tried mangosteen juice and it didn't work for me but I'm really glad I tried it (it was cheap just to try).
Another one that one recommended on the boards a lot is curcumin and high magnesium which also doesn't work for me but I see they work for a lot of people.
We're all different and need options to try until we find what works for our bodies.
Posts: 2839 | From California | Registered: Jul 2012
| IP: Logged |
posted
Sonatina.. That's unfair. I have never stated where I buy Xango mangosteen. I have been using it for more than 10 years and I hope to never be without it.
I don't think that ingesting 3 grams of fructose a day is too much. An apple contains more than that!
I think I've referred to mangosteen only a few times over the past year and rarely say "Xango" brand anymore.
Now on the other hand, I repeatedly tell people about curcumin and where I buy it. Crucify me if you like!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
I tend to be sensitive to tropical fruits so I doubt I could try mangosteen anyway. Can we just get back to my original question?
I'm having extreme sound sensitivity with rifampin and also light and smell sensitivity. I feel like I have a fever and I'm not even going to bother taking my temperature because I never have a fever.
It's been more than a week. In one year of treatment I have never had a Herxheimer from anything so I can't tell the difference between a Herxheimer and a drug allergy. I emailed my LLMD but I'm not sure when I'll hear back.
The tinnitus is really minor so I'm not up for looking at a whole bunch of threads on it. Thanks. Could someone please respond if they have experience with this drug and leave the other stuff out of it? I'm feeling so awful I really don't care if someone is or is not promoting a certain type of juice.
-------------------- Female. Misdiagnosed with fibromyalgia for six years. Started treating Lyme in 2014. IgG positive for mycoplasma and clinically diagnosed with bartonella. Also have Hashimoto's thyroiditis. Posts: 32 | From New York | Registered: Oct 2014
| IP: Logged |
should not be taken as medical advice.
Posts: 764 | From Northwest | Registered: Sep 2014
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Otoxicty - first consideration
Also, sound exposure that may have been unnoticed. Sounds can damage at lower levels when on ototoxic substances. It does not even have to be noise.
I did not have time to go into detail with my first reply above and simply posted the links set.
The very first thing to always check with any ear or vestibular matter is if the Rx, or OTC, or even herb or chemical
is - it is on the ototoxic list? And for that, really Bauman's book may be required. Still, it may be on some of the lists on the web / at his sites.
Within the Tinnitus thread is more detail. Always start with that question, though, about ototoxicity. And, if liver / kidney support is adequate. It may not be if hyperacusis is showing up.
And, it may not be so much the new addition is the culprit but could take the total ototoxic load just over the top to the danger zone. Again, the thread links speak to that as well.
Everything being taken should be considered regarding the ototoxicity question. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
I haven't started on rifampin yet, but the sound, light, and smell sensitivity are all sx I experience courtesy of bart. There's plenty of info regarding toxicity, but maybe these sx could be something of a herx for you?
Whatever causes these sx to happen, increasing my detoxing has helped them a lot.
Posts: 474 | From US | Registered: May 2014
| IP: Logged |
posted
That's what I'm trying to figure out… If it's a Herxheimer or an adverse drug reaction.
Now I have the worst headache of all time.
I started treating in 2014 but I never had a Herxheimer.
-------------------- Female. Misdiagnosed with fibromyalgia for six years. Started treating Lyme in 2014. IgG positive for mycoplasma and clinically diagnosed with bartonella. Also have Hashimoto's thyroiditis. Posts: 32 | From New York | Registered: Oct 2014
| IP: Logged |
posted
I looked at the tinnitus thread, but the link for ototoxic medications had expired.
It's hard for me to focus right now because I'm just feeling so ill and can't read much or assimilate new information. I'm wondering if I should just stop this medication.
I've been googling and I see some people having the same side effects as I have and saying they got better, that it was a Herxheimer. In my case I've been on this thing for two weeks but a few people said that they had had herxes for several weeks. I'm confused… I thought it was something that went for a few days or a week.
-------------------- Female. Misdiagnosed with fibromyalgia for six years. Started treating Lyme in 2014. IgG positive for mycoplasma and clinically diagnosed with bartonella. Also have Hashimoto's thyroiditis. Posts: 32 | From New York | Registered: Oct 2014
| IP: Logged |
posted
I am not a rifampin user; I have sound sensitivity from Lyme and I travel at all times with Mack's wax earplugs, ready to stick them in my ears when needed. That's one way to deal with high volume sound when you're sensitive.
DeathToSpirochetes, couple questions: first, have you asked your treating doctor these questions? And second, I don't know if you would want to retitle your thread to get responses, as in post a strong question in the title with question marks to draw attention from rifampin users? It's a thought - you can do as you wish.
[ 01-19-2015, 08:23 PM: Message edited by: Robin123 ]
Posts: 13171 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
I hope you hear something back soon. Rifampin might be difficult to drop and restart. If it is too unbearable might you have the option of reducing the dose to something more manageable and ramp up more slowly?
When I added bactrim my bart got very angry for a month. I also developed new bart sx. All bart sx were greatly amplified. Looking back I believe I experienced what most consider a bart herx. Bart's a nasty beast even when you're not poking it.
Posts: 474 | From US | Registered: May 2014
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.
MAY possibly also offer some degree of VESTIBULAR SUPPORT (all things ears, balance, etc.). -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
-------------------- Female. Misdiagnosed with fibromyalgia for six years. Started treating Lyme in 2014. IgG positive for mycoplasma and clinically diagnosed with bartonella. Also have Hashimoto's thyroiditis. Posts: 32 | From New York | Registered: Oct 2014
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I'm not Robin but happened to see your question.
Just click onto the edit icon (tiny paper & pencil) just over the first post you made. You can edit the title just as you can edit anything in the post box.
Hope this helps. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
I already changed it but it disappeared from the main list of threads anyway. How come?
-------------------- Female. Misdiagnosed with fibromyalgia for six years. Started treating Lyme in 2014. IgG positive for mycoplasma and clinically diagnosed with bartonella. Also have Hashimoto's thyroiditis. Posts: 32 | From New York | Registered: Oct 2014
| IP: Logged |
lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Yes!! I had a major increase in light and sound sensitivity on Rifampin. Also, phantom smells, yes to that too. I can tell you this: Rifampin was hard for me tough out but it was hands down the single best drug I've taken for my infections in a decade of treating. It is worth it!!! My bet is that you're herxing. Hang in there.
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic