So i developed nerve pain in my head on the left side as a sudden event right after a big pulse of abx in December. It was triggered by a high pitch noise and has led to hyperacusis and severe pain.Dr. J has been useless during this whole thing. I am honestly scared that one of the multiple abx he had me taking caused this as an AE.
I was pulsing Mepron, Mino, Omnicef and Flagyl when it happened.
It was just so sudden in my head, in response to a loud noise and now i seem to have permanent hyperacusis and severe pain that gets worse and worse. I can barely touch head or face and feel like its triggering central pain.The neurosurgeon said I have occipital, temporal and possibly trigemianl neuralgia but MRI doesn't show a cause for sxs.. big surprise...
I am scheduled with Dr.C but am honestly feeling terrified of antibiotics even as bad as other symptoms are getting...My head pain is unbearable daily.
Dr. W has rxed Rifampin, zithromax and planquinil...He thinks I should have a steroid injection even with the risk it is so bad. So scheduled with pain management per the neurosurgeon.
Im in PT, seen craniosacral dr, dentist for teeth and guard for grinding, ND who did some detox and light therapy (the frequency was picked up by the nerve in my head) I think it made it worse. I had lymph massage which also irritated head as it can barely be touched..Im taking triliptal but doesn't do much.
I am baffled and honestly terrified at my turn for the worse. I am stuck not sure what to do to help myself and everyone is just guessing at what has happened )-:
Could this be a floc reaction from non-quinolone abx?
Posted by Keebler (Member # 12673) on :
- I don't think it's possible to be "floxed" by non-quinolone antibiotics.
However, my first thought is all about ototoxicity and propensity of damage to the ears / inner ear system - and to the cranial nerves VI & VII - of the Rx on your list.
LIVER SUPPORT may not have been enough protection. See the Tinnitus thread below for detail.
Lyme, itself, can damage the cranial nerves that are so connected with the ears / balance, anyway but all these other things can make it worse.
And, low magnesium & low essential fatty acid levels that can also set up the hyper startle reaction (that may be on the seizure spectrum).
The grinding (bruxism) is a major sign of magnesium deficiency. -
Posted by Keebler (Member # 12673) on :
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posted by Lymetoo (Member # 743) on :
I would suspect the flagyl... It caused nerve pain for me the last time I took it.
Have you tried upping your magnesium?? I'm sorry you are in so much pain!!!
Posted by Keebler (Member # 12673) on :
Excitotoxins; MSG; Aspartame; & "Natural" Flavors (that are not likely natural at all). Such additives can also set you up for hyper startle reactions.
Glutamate / Glutamic Acid can be very destructive to the nerve fibers & function for those with lyme and neurological issues -- & cause irritation, heart rhythm irregularities, anxiety, even seizures, etc.
It's in food, naturally, but in supplements, it can be "killer" for use unless just in a very tiny amount and balanced with magnesium.
Some doctors suggest even avoiding foods that are high in glutamate / glutamic acid for those with neurological conditions.
Check all supplements and assess diet (and anything that comes into our bodies for:
See post: Caution: Aspartate; Glutamine; and Phenylalanine (3 excitatory amino acids that can be wrong for us when added as supplements, beyond a normal dietary level)
Seaweed has its own natural MSG and can be very excitatory -
Posted by Keebler (Member # 12673) on :
- Please Do NOT consider the suggestion of the doctors for a steroid shot. Please. Do Not.
There are so many other ways - better ways - to approach this. A steroid shot could be disaster.
Topic: what do STEROIDS actually do to those with lyme? Risks, long term damage discussed. Links. -
Posted by mamalicious (Member # 43611) on :
I am taking magnesium and fish oil among my other supplements...curcumin, liposomal C, B 12, probiotic
Keebler, so do I proceed with antibiotics. I am just lost as to what I should do. I know hyperacusis is involved.Its also involves my left eye. Severe pain... No doctor seems to know what is happening...
Am I forced to change to a naturopath route now. Even then its confusing what to do. So many scams out there..I spent $2000 in one week with this ND here in Dallas and felt worse from her frequency treatment. And she is into that Zyto which seems crazy to me.
I can't take neurontin because it gives me crazy anxiety and depression. Triliptal isn't doing much and I'm scared to keep upping the dose..
I'm in agony even typing this because of the pain in my eye...
I'm totally lost...
Posted by seibertneurolyme (Member # 6416) on :
My personal opinion - based on hubby's experiences - if the antibiotics caused such an extreme herx reaction then they were actually working on your particular infections.
Basically what hubby did every time he ended up in the ER and/or hospital due to a herx type reaction was to resume the same meds at a lower dose. Sometimes he did this while in the hospital and other times after being released. A couple of times he did not even tell me that that is what he had done until after a week or two when he had proven to himself that he could tolerate the meds.
I specifically remember this happening the first time he added in flagyl. The doc had had him stop mino which he had been on for about a year and a half but did not replace that med with another lyme antibiotic. The flagyl by itself obviously acted to burst cysts but could not kill the lyme.
If it was me I would start by trying just one antibiotic and ramp up the dose and then add in the others one at a time.
Personally hubby never pulsed antibiotics. The 3 times he tried pulsing babs meds proved that would not work for him. I know of other people that do not do well with pulsing meds.
Actually it depends on how you were pulsing. Hubby did take mino every other day and also zith every other day for several months - but they were not strong enough if not taken daily at higher doses than the original doc prescribed.
The flagyl is the most likely of the antibiotics you listed to cause nerve issues.
Have you ever been on IV rocephin or other IV meds? It sounds like the oral meds are just stirring things up and actually IV meds that can penetrate the blood brain barrier may be needed.
Did you start all those meds at once or add in one at a time?
I would add in antioxidants such as pychnogenol (pine bark extract) and high dose vitamin C and CoQ10 which all penetrate the blood brain barrier.
Bea Seibert
Posted by Judie (Member # 38323) on :
Plaquenil is a quinolone. I got floxed from a quinolone (it doesn't have to be a fluorquinolone).
What you're experiencing doesn't sound like a herx to me, especially with those lingering symptoms.
Flagyl can cause peripheral neuropathy (sharp, nerve pain).
I've had adverse drug reactions to some of what you mentioned.
Minocycline, zithro and rifampin caused me MAJOR neuro problems. My body couldn't process them. Not a herx.
I lack the gene to process some antibiotics.
Good luck. It sounds awful.
Posted by Keebler (Member # 12673) on :
- The Tinnitus thread has lots of support suggestions to help protect ears during antibiotic treatment - it may or may not be enough, though.
Be sure to read how to protect hearing, too. With certain Rx, we are much - much - so much more susceptible to ear nerve damage at LOWER decibels than normal. So that means even using ear plugs / muffs around a blender, vacuum, lawn mower, hair dryer --- and avoid in-the-ear pods.
There may be some things about sound that if we just make some simple adjustments will help prevent damage.
As for hyperacusis and the startle spectrum, I am intimately woven to all that, too. There are other things to help, such as adrenal support that is so essential. Be sure to keep that tinnitus thread handy for all that.
Aggressive rest really matters, too, to calm down the various nervous system connections.
I'm sorry you are faced with all this - there is some way to still address lyme / infections and keep your ears / balance / liver safe. Those ways just may be not so clear just yet.
The ND you saw may not be as educated as you need. See the "how to find an ILADS LL ND" here, too. -
Posted by mamalicious (Member # 43611) on :
Judy,
How did you get tested for that gene? I don't know what I've reacted too as I was always given them all at once.
The pain is sharp like you describe and unrelenting.
Keebler,
I'm having worsening "electrical zaps" to my tongue in sleep. I'm also worried about the Ambien. How can I get off. I'm tortured...
I wondering about going to somewhere like the Spinogule clinic?
You guys I feel like I'm dying. I can't survive like this...
Posted by mamalicious (Member # 43611) on :
Of course the triliptal is new too in past month for this pain. I took one tiny dose of klonopin, ummm bad idea.. these zaps are keeping me from sleep now too. they happen over and over...typically when i wake from ambien around 3 am...
Posted by Lymetoo (Member # 743) on :
I would not waste money on Sponaugle.. Not sure where to tell you though.
I would look for the best neurologist in Texas or elsewhere... or a pain management clinic.
Do not worry about getting hooked on Ambien. I took it for years and then got off of it.. now I'm back on it. (it was not hard to get off of)
Posted by Judie (Member # 38323) on :
"How did you get tested for that gene?"
I did 23andme testing which showed the gene after I ran it through health analysis sites. Unfortunately, the health analysis of genes has been removed from most sites at this point.
Posted by Lymetoo (Member # 743) on :
But you can find help through sites like Livewello.
Posted by RyanXC (Member # 43390) on :
Judie, is that gene the same as MTHFR? I'm afraid I'm having issues processing the and as well.
Posted by Judie (Member # 38323) on :
quote:Originally posted by RyanXC: Judie, is that gene the same as MTHFR? I'm afraid I'm having issues processing the and as well.
I have no idea if it's the same. I had someone ask me this question before in regards to rifampin (which made me horribly ill).
Here's my response:
There was a report that use to be up that had all that information. It was from Genova and it got pulled shortly after the health analysis crackdown.
I printed it out (thank God) before it was removed.
It says it's CYP1B1 (Cytochrome P450 1B1). There are two SNPs that measure risk. These are L432V and N453S. These gene are associated with not processing aromatic hydrocarbons correctly either.
I hope that helps.
Posted by Judie (Member # 38323) on :
quote:Originally posted by RyanXC: Judie, is that gene the same as MTHFR? I'm afraid I'm having issues processing the and as well.
I have no idea if it's the same.
I had a blood test for the typical 2 MTHFR that the doctor tests for and mine actually weren't that bad.
I had someone ask me this question before in regards to rifampin (which made me horribly ill).
Here's my response:
There was a report that use to be up that had all that information. It was from Genova and it got pulled shortly after the health analysis crackdown.
I printed it out (thank God) before it was removed.
It says it's CYP1B1 (Cytochrome P450 1B1). There are two SNPs that measure risk. These are L432V and N453S. These gene are associated with not processing aromatic hydrocarbons correctly either.
I hope that helps. [/qb][/QUOTE]
Posted by BoxerMom (Member # 25251) on :
Didn't read entire thread (too tired) but have you tried IV glutathione? Glutathione is the only antioxidant molecule that is small enough to reach the inner ear.
Liposomal, if you don't have access to IV, but many NDs do the IV.
Posted by droid1226 (Member # 34930) on :
No to Sponaugle, at all costs. Doesn't seem like you were taking a drug to get floxed on.
MTHFR could interrupt processing of any nutrient, drug, mineral, etc...I've noticed a lot of people who have one or both of the MTHFR gene react terribly to rifampin(off subject)
I wouldn't take the steroid shot unless it's almost unbearable. It sets a lot of people back because it's immunosuppressive.
Dr. H says IV glutathione has had a miraculous effect on a select group of sick people, so like Judie says if it reaches the inner ear and you have a longshot at getting significantly better, might be worth it.
Posted by Judie (Member # 38323) on :
Here's a chart on drug interactions and P450 (I'm not sure how to read the chart, but here's the info):
When taking rifampin and doxy, I did not do well at all. I now have constant burning and tingling in my head and sinuses. I have had tinnitus and many auditory symptoms since losing my hearing before the start of ABX.
I wonder if damage from rifampin could have caused some of my symptoms as opposed to Lyme and Co. I never took flagyl or plaquenil.
Posted by Phoiph (Member # 41238) on :
It always amazes me when we assume that our bodies have no limits.
Multiple drugs and supplements over time in a person who is very ill and not able to detoxify properly WILL lead to a breakdown in some system, somewhere, someday.
To me, this is a typical scenario...a person reaches a "tipping point", and has an "event" which makes them question, "What happened"?
In my opinion, in this case (and many others) it occured after a "big pulse" of antibiotics, and so is likely the result of a toxic "overdose". I think it is misleading to automatically attribute these reactions to a "herx"...which can lead the person to continue, or even increase the treatment which caused the issue.
When someone (who does not have Lyme) has an accidental or intentional "overdose" from prescription meds or alcohol, or has a severe reaction from a supplement or food, for example, are they advised to keep taking more?
Why is it then, when someone is already ill and their body is obviously having difficulty processing substances to the point of a severe setback/reaction, do we even ask the question if they should continue on with this therapy?
It is not ONLY about the bugs...it is about healing and supporting the body systems and helping them to function again so the body can deal with the infections properly.
I am well and med free now, but I was one of the sickest patients LLMD's had seen, to the point that each one of them eventually gave up on treating me. During treatment, however, even though I became more ill with each protocol, I was encouraged to continue and "push through the herx", until I ended up homebound for 5 years in a severe state, unable to tolerate anything.
It was actually a blessing in disguise, however, because I eventually found mHBOT, which has a combination of pathogen-killing and whole body system fortification effects, and I am willing to share how I became well with anyone who is interested.
While navigating the frustrating and confusing "Lyme maze", we must remember to use common sense...our bodies are amazing, but they are not without limits...