*The following is an individual’s story of surviving fluoroquinolone toxicity. It is not medical advice. Please see the disclaimer at the bottom of the story. Thank you, and please be cautious with all treatments.
Tamara’s Recovery Story – Cipro Toxicity
On February 4, 2014 I went to the hospital with pain in the flank of my back. Having had suspected kidney stones and a couple kidney infections in the past I knew to head to the doctor right away. When I got there, they did blood and urine tests but did not find anything. They gave me an iv with Ceftraxione (non FQ antibiotic) and sent me for an ultrasound the following morning.
The ultrasound showed nothing on either kidney or my bladder. When I went in to get these results the doctor was quite rude to me, and barely looked at me at all, but made a fateful decision to send me home with a prescription for Cipro. 500MG, 2 times a day for 5 days.
I went home and took the first pill that night and went to bed. In the morning I woke up and took the second pill. My right leg began to swell. I then began to look on the internet for adverse reaction symptoms. I had an allergic reaction to another antibiotic called Azythromycin a year and a half ago, so I wanted to find out what I was up against. What I found horrified me. I started hyperventilating, basically freaking out, big time. I called the hospital and told them I thought I was having a reaction to the Cipro and I had read on the internet what could happen and the nurse laughed at me…a lot of help that was. I stopped taking the Cipro after only those two pills.
Two days after this happened, I was to move to a different province of Canada, where I live. I had previously been a dancer since I was 3. I had danced professionally for 10 years at this point and had co-owned a performance artist agency for the last 4 years. 5 days before I was floxed I had signed over my co-ownership to my two partners and had intended to move and pursue a new passion of teaching a healing dance system called Wu Tao. I was to start my training for this right away. I went ahead with my move.
2 days after my move, so 4 days after being floxed, my leg began to swell so much I went to the local emergency room. They tested me for blood clots and nothing came back. I mentioned that I thought it was the antibiotic but was looked at like I was crazy.
I decided to do my own research and I implemented some things in the very beginning that I think may have to do with my fast recovery.
1) DETOX DETOX DETOX! I began to drink a whole pot of Dragon Herbs Longevity Tea everyday for the first couple weeks. As I understand it this tea has saponins which help essentially “wash” your system. I had many detox symptoms from this. I also used the Dragon Herbs brand Schizandra and Goji tincture to help protect my liver during this time.
2) DIET I had already eaten a mostly vegan diet but in the first few weeks I really cleaned up my diet. No processed foods, no sugar. As many fruits, vegetables that I could get into my system I did.
3) No excess supplements. I did at the beginning take many supplements and I had pain over the area of my liver which led me to believe that my liver was being overworked trying to process so many toxins. I pulled back and only took what was absolutely necessary until I felt I had detoxed enough.
By about 3 weeks in, my leg was in such excruciating pain and so tight that I could not straighten my leg. Devastating for a dancer.
I met a naturopath who was trained in Myofascial Release. He began to treat my leg in the 3rd week of floxing. Slowly, over the next few weeks my leg began to release it’s iron grip.
At 7 weeks, I suffered a setback. I developed new symptoms. My left arm all of a sudden swelled up. I developed severe insomnia and panic attacks. I developed tremors, which did not stop all day and night, adding to the insomnia. I would get burning and shooting and electrical shock pains through my body.
I do believe there is some truth to the idea that the FQ’s get stuck in our tissues and as my naturopath was doing Myofascial Release he was releasing it into my system and causing other systems and processes to become affected.
It was at this point I started to add in other supplements again and I also started getting Gluathione IV’s from the naturopath.
Supplements I took:
1) Probiotics
2) Greens Supplements (Vege Greens but Greens+ is also good)
3) Protein in the form of Vega shakes
4) Magnesium pills and transdermal
5) High high dose vitamin C 4000 mg a day
6) CoQ10 and Omega 3-6-9
7) B Complex Vitamins
Glutathione was my magic bullet though. After my first IV I began to be able to straighten my leg. After the second, all of my neurological symptoms such as tremors and insomnia and panic attacks went away COMPLETELY.
I did do some physio but it seemed to flare up my condition. I held off on the physiotherapy until just recently.
At 99 days into floxing, I started to WALK 🙂 I had been on crutches for the entire time, and I also was thankfully able to spend my entire floxing on bed rest. I think this made a big difference as well in how much my body was able to heal. If you can, take as much time to rest and let your body do it’s thing.
I am now at 106 days post floxing and I’d say I’m 97% better. I have been able to walk for a week. Physio measured my Achilles tendon last week and it was at an 85 degree extension while my good leg was at a 100 degree extension. I have a slight limp and I still need to build muscle.
However, I am able to drink alcohol, eat whatever food I want at this point, and my leg does not flare up in pain or swelling anymore.
I am not dancing quite yet, but I do believe I will be VERY soon. For now, I have taken to hula hooping!
I believe I will make a full 100% recovery at around the 4 month mark post floxing.
Do not give up, keep a positive attitude, imagine healing for yourself and trust that your body knows how to fix this. You CAN get better!
** The story above is truthful, accurate and told to the best of the ability of the writer. It is not intended as medical advice. No person who submits his or her story, nor the people associated with Floxie Hope, diagnoses or treats any illness. The story above should not be substituted for professionally provided medical advice. Please consult your doctor before trying anything that has been mentioned in this story, or in any other story on this site. Please also note that people have varying responses to the treatments mentioned in each story. What helps one person may not help, and may even hurt, another person. It is important that you understand that supplements, IVs, essential oils, and all other treatments, effect people differently depending on the millions of variables that make each of us unique. Please use appropriate caution and prudence, and get professional medical advice.
You are very lucky to get past this in 4 months. Very good to hear. Hope you continue to improve. 🙂
Thank you Charles. I’m incredibly thankful to be healed so quickly 🙂
Thank you for sharing your Story Tamara…. IF ONLY I had reacted at 2 Capsules in… I am sincerely, glad & relieved for, ALL who were saved any permanent Damage… I am writing from a Urologist’s Office, have seen blood in my urine 3 Days this week, have passed 1 of 2 Kidney stones this very Dr observed on the last Scan in the Fall… Now, both my Husband and this Dr don’t believe there will be anything show up, so I have already put off the MRI for almost a month, while struggling with severe pain in my Urinary tract &/or Bladder. My Legs are better than 3 yrs ago, but have Tendonitis in Both, spurs on both Knees, & fell on them the week before leaving for the 1st Vacation in 3 yrs… Missed much of Disney due to my Knee, & other Symptoms. It is getting very difficult to Be Positive in my Situation. But, just as if you were my real Sister, or Daughter, I am relieved you have not suffered any more than you have… And, wish I were waiting for Acupuncture for less severe Symptoms just now… I wish continued healing, & total Wellness to you… Thank you again for Sharing…
Debra I can only say that if it had not been for this website in particular I would not have known how to heal myself in the very early days of it. My heart breaks for stories like yours and I can only hope that what is written here helps others do the things in the beginning that might prevent further damage. Best of luck to you. ♡
Where are you based at the moment? My experience has been very similar and more info would be great
Hi Jordan I live in the Okanagon BC Canada 🙂
tamera, thank you for sharing your story. Do you mind if I ask which brand of vitamin c you took? 4000 mg is quite a bit so wondering if it was liposomal or not, and again, what brand exactly? thank you!
JB
Hi JB I took regular Vitamin C, i often take high dose Vit C when I am sick, and my naturopath also approved this. I also had a Myers Cocktail done, which I forgot to include in this story and it had 10,000 mg of Vitamin C. It’s not going to hurt you.
Hi Tamara,
How are you now?
Did something come back or all still well?
Regards,
Mark
I have been symptom free and recovering still since this was posted! I’ve been walking for a whole month now! 🙂 I am no longer limping. My has fully stretched out. I am still in physio starting more dynamic type exercises and I am getting better everyday. I think it’s safe to say this is the real deal 🙂
I had the Meyers Cocktail with a glutathione add on when I was first floxed. I’m at four months right now and kind if stuck, wondering if doing that again would help…
Isn’t there a pretty high risk for tendon rupture still 4 months out?
I read cases of ruptures as far as 9 months out.
Just wondering how you see this risk while doing physio therapy and exercise.
To put it in perspective, I was able to lift 160Kg only 5 weeks ago (before being floxed) and was very athletic with high endurance a lot of explosive power and also martial arts skill.
Now…I’m scared of rupturing a tendon even when standing up from a chair…
Mark
Please keep me posted Tamara, always happy to read such positive posts! 🙂
Mark
Hello Tamara, how many Glutathione IV’s did you have in total? I am four months out and with a lot of joint pain.
Tamera, Do you mind saying how many mg of Glutathione you took? and yes, how many IV’s did you have? Do you think it was more helpful than the Myers? or more?
I only had two glutathione ivs. As far as how much I don’t know. I know I was given quite a bit more than a regular dose. He did it slowly over like 30 min. I want to say it was around 3000 mg each dose.
Also in regards to your question about whether it was more helpful than the Myer’s cocktail, ABSOLUTELY! The first glutathione IV I got, I could straighten my leg. That one included the Myer’s cocktail. The second one I decided to just do the Glutathione and all my tremors, panic attacks etc stopped that day. Glutathione really was my magic bullet.
hey tamara, i’ve been considering trying to glutathione IV, glad to hear it helped you!
im 7 months floxed and still struggling, i think i’ll try it.
Please do try it! It helped me so much. I’m now fully healed and expecting my first child 🙂
Mark,
Dr. Whitcomb (the longevity MD who worked with me post Cipro) said the majority of tendon ruptures happen in the first month. The longer you go out from that point the more your risk goes down.
FQ’s damage tendons through tendonosis not tendonitis. Cells are damaged through oxidative stress and those abnormal cells replicate forming more abnormal cells while at the same time the healthy cells seem to almost completely stop replicating themselves.
MitoQ and Idebenone (two things I take every day) were shown in a research study to stop this damage in its tracks. They did not help healthy cells to replicate any faster, so I added PQQ, shown to stimulate biogenesis of new mitochondria in aging cells.
FQ tendon ruptures are spontaneous ruptures. If it’s going to happen it happens even before you put your feet on the floor to stand up from that chair. Avoiding standing up only delays the inevitable. However, these spontaneous total ruptures usually happen very soon after taking the FQ’s and are very rare, often the result of a steroid combined with the FQ.
I know I had tendon degeneration in my left Achilles’ tendon, probably through the process described above. But it stopped getting worse and started getting better. Other tendons have been affected by tight muscles pulling on them constantly. The muscle contractions probably also cause ischemia and the chelation of magnesium wasn’t helpful either. But I’m four months out and I don’t really worry about a tear or rupture. I’m not doing plyometrics, but at my age that sort of thing is probably not a good idea anyway. I avoid running and jumping for the most part. But I’ve hiked and I canoed this weekend.
You can put magnesium oil right on the area of tendons you are concerned about, and your body will take the magnesium right through your skin to help heal itself. Vitamin C supports tendon healing. I have an ultrasound machine and that seems to help.
Are you having tendon pain in a specific area? My left Achilles didn’t really show damage until about two months out, but it’s been healing pretty well.
I think if you take antioxidants to stop the damage and then give your body what it needs to heal itself it will do so. You probably will have to be careful for awhile, but there’s no reason to assume you will have a tear or rupture. Moving normally is a good thing, in my opinion. For me it stimulates healing. If you become immobile everything gets weaker and you heal even more slowly. But you just have to listen to your body while at the same time not letting fear paralyze you. A rupture is a scary thought, but the odds of it not happening to you are strongly in your favor. Active range of motion has always helped loosen up my tight calf and ankle muscles. Playing the pedals on the organ at church really seems to help. Range of motion without weight bearing seems to work the best. Sometimes the tendon pain is just from tight muscles pulling on the tendons. Massage to my calf muscles worked really well to loosen things up also.
Hi Ruth!
Thanks for the kind words and interesting meds.
What makes me concerned are case studies like this one:
“A 38-year-old physician was involved in a motor vehicle accident resulting in vertebral and rib fractures, as well as bilateral hemopneumothoraces. After a 3-week admission, he was discharged on a 1-week course of ciprofloxacin (500 mg twice daily) because of a productive cough. The patient had no symptoms related to his legs until 6 months after discharge. At that time, he had sudden, severe pain while taking a short walk. Physical examination was consistent with a complete rupture of the Achilles tendon. He subsequently had surgical repair of the rupture, with an uneventful postoperative course.”
http://www.medscape.com/viewarticle/410546_2
And in my case, I got ibuprofen for 2 days before getting Cipro and got a corticosteroid ear drop (which dropped into my inner ear through the whole in my eardrum and burned like crazy) while being on it.
Do you think that’s enough to make things worse?
Mark
That’s what sucks, Mark. No one knows. I feel safe because I took antioxidants shown to be effective against Cipro tendon damage in a peer reviewed research study. My thought is, get on the best antioxidants in the world and give your body all the materials it needs to heal. The case you site does not fit the typical incidence of rupture. You can alway find that one or two scary cases that throw you off your gourd, but there are amazing stories of healing too. Strive to believe the stories of healing will be more akin to your story than the scary stories, because statistically speaking it’s true.
NSAID’s do not increase risk of tendon damage– that’s steroids. The Ibuprofen could make your psychological symptoms worse through further downgrading GABA receptors, but it won’t cause any problems to your tendon.
Yeah you’re right Ruth, I shouldn’t have even posted this particular case here as it’s kind of against what this site is about.
Can you give me the exact brand names you have used?
Supplements or prescribed meds?
Mark
Idebenone I get online from HBC. MitoQ is the brand name for a CoQ 10 that is very targeted to the mitochondria. PQQ I ordered from Amazon.
Do you have any experience with liposomal vitamin c?
It’s supposed to help massively if taken in high dosages like 10g/day.
Mark
Mark,
Are you feeling any better these days?
Thanks Ruth for adding this awesome information. And to Mark. I did take Ibuprofen with the Cipro as well and I was worried about rupture but it never happened. I did stay on bed rest for 3.5 months as a precautionary measure (or what I though was precautionary lol) but I also couldn’t weight bear I was in a lot pain.I never ruptured. I was terrified of it happening too. Once i got past a certain point though. .i just thought to myself if it hasn’t happened yet, it’s not going to.
And I’m nearly 5 months out now. My Achilles was shortened by 15 degree points and physio was able to work it out. So i know at the very least my tendons are becoming more pliable.
Thanks for that info!
I can walk with the pain and on some days it seems to be less before returning on that same day with flying colors. “lol”
I tend to try to walk as much as I can until pain starts, no idea if that’s a good or a bad thing.
That being said as much as I can means walking from my bed to the kitchen, or on some days to the car and back.
Let’s wait and see, hope to hear from you again soon. 😉
Mark
Tamara,
Did you have a reaction to the vitamin c?
I bought Nutricology’s Liposomal Vitamin C and am supposed to start with 1000mg daily and increase to 10000mg.
It has Ethanol in it but according to the doc it shouldn’t be an issue.
Mark
Second question:
How are you? 🙂
Tamara,
Are you not replying here anymore?
Is there another way to reach you regarding vitamin C reactions?
I started 3 days ago with 2000mg liposomal vitamin c, ingredients:
-Vitamin C (as Sodium Ascorbate) 1000mg,
-Sodium 131 mg,
-Essential Phospholipids (from Purified Sunflower Lecithin) 450mg,
-Water,
-glycerin,
-ethanol,
-lemon essential oil.
http://www.allergyresearchgroup.com/Micro-Liposomal-C-Highly-Absorbable-C-Sunflower-Liposomes-4-fl.-oz.-p-358.html
I suddenly got tremors (which I didn’t have before), strange headache on one spot on the back of my head that come and go like jolts, had trouble falling asleep (which I didn’t have before), muscle weakness, dizziness, increased pain in my achilles tendons, etc…
Are my reactions to the vitamin C normal or could it be from something else?
I heard from several sources that vitamin C might help with Cipro poisoning but these reactions are scary to say the least.
Mark
Hi Mark,
No I never have reacted to Vitamin C, could it maybe be that you are developing new flox symptoms? I developed tremors about 7-8 weeks in after initial floxing. I’m not really sure
I have been away sorry. And for some reason I’m not getting the email notifications, just when I log into my wordpress. Are you on Facebook?
Just wanted to say that high doses of vitamin C can cause issues with oxalates. Lowering my oxalate intake and extra vitamin C really helped me improve.
Hey Tamara;
Sorry no facebook here.
Email?
Mark
tamara.burton@gmail.com
hi mark, is your tendon pain only in your achilles or other tendons? do you have pain in your hips at all?
Jimmy.
Hard to explain as the pain is just there without moving on some days and on others it seems to be a case of overuse type of pain.
Meaning that my Achilles tendons tend to hurt most, as I’m trying to walk daily, but others hurt as well.
My shoulder and biceps tendons start to hurt when I’m holding my phone for too long for example, my lower back and my hamstrings start to hurt when I’m sitting for too long, my neck hurst when I’m watching TV lying in bed, etc…
And as said there are days when it just starts without a movement.
Like lying in bed and suddenly my toes start to hurt, or my hip/upper back/whatever…
It’s just hard to know what to do.
On one side I think that rest is important but on the other side I believe that the body tends to heal itself better when staying fairly active.
It’s a tough balancing act.
How about you?
How many weeks out are you?
Mark
Mark,
You’re doing exactly what I did– move about until I get pain, then stop. I would ice my Achilles and my ankles to reduce inflammation. Having an ultrasound machine helps too. Massage to tight muscles helps. Pretty much that is what Dr. Whitcomb said to do– use it if you can, because through normal use you will get more tissue turnover and healing. But you just want a little soreness, not overdoing it. Sometimes I’ll have a little pain and then it will just work its way out and I can walk more. I do tend to get more stiff after exercise than before, just in the areas where I was affected by the FQ. Stretching has helped me, but you have to be very gentle with this, especially at first. Consistent, gentle, long stretches– like 30 seconds or more and no bouncy stretching. You shouldn’t do that anyway, it just makes things tighter.
Sometimes I’ve found that moving when it feels like an overuse injury actually loosens it up and then it feels better. Not moving enough is going to make you stiff without the FQ damage, so I would err on the side of moving. But we’re talking gentle range of motion, walking around the house a little, that kind of thing. Your body will tell you when it is ready for more. I believe that becoming completely immobile will only cause other problems, delay healing and may not prevent a rupture. Because although this damage feels like an overuse injury, it is not. Keep taking your antioxidants– that’s your best defense against a rupture. If it ruptures it’s going to happen because oxidative stress damaged cells which then produced more damaged cells. Antioxidants kill off those damaged cells and stop them from replicating, while protecting other cells from damage from the oxidative stress still going on in your body.
The more I research and write on this and work at healing my own damaged body I just can’t believe doctors use these drugs as a first line agent. If it were a life or death situation, I would have no problem dealing with tendon issues four months later. But I had a minor sinus infection and now I wake up every day feeling like I sprained both ankles. This is so nuts.
Ruth
What kind of antioxidants?
You mean the Mitoq, etc…?
MitoQ and Idebenone were shown in a clinical research study to stop tendon damage from Cipro. So I went for both of them. But vitamin C is also vitally important because it directly supports tendon health and healing– at least that’s what I read. NAC (Acetyl cysteine) is also good for increasing glutathione in a dramatic way. It also was mentioned in a research study, but I thought it would be prescription and expensive, because they also give it to children with cystic fibrosis and to save a person’s liver from oxidizing after Tylenol overdose. Dr. Whitcomb sold me a bottle for ten dollars, over the counter, no prescription needed. He suggested it after I was having signs of tendon degeneration in my left Achilles’ tendon. I got a rash from it, looked it up online and sure enough, it said skin reactions from NAC can be “bothersome” and my rash looked just like the picture. But my neighbor who is a retired biologist said even two days taking NAC is enough and I took it for two weeks.
Ruth do you have a link to the study about Cipro tendon damage and Mitoq?
Would be awesome! 🙂
Mark
Found it:
http://www.ncbi.nlm.nih.gov/m/pubmed/19235604/
Is that the right one?
Mark
I don’t think that’s the same one, because the one I read also mentioned Idebenone. But it certainly came to the same conclusions regarding the effectiveness of MitoQ. Had I been taking it prior to taking Cipro I doubt I would have had any tendon damage at all.
I completely forgot to ask you this Ruth.
Are you still symptom free or did some of them come back again?
(You’re 4 months out now right?)
Mark
I’m not symptom free and I haven’t really ever been. I get small windows of normalcy, but they are very brief. There is almost always something to remind me I was floxed.
However, initially my BP was impossible to control and kept skyrocketing. That has stopped. I was hypertensive before Cipro so my BP is better now than before.
I had tightness in my calves the first month and a half and that is mostly gone but now it’s in my ankles. My left Achilles’ tendon that sustained minor damage is actually healing, but the tendons in my ankles hurt a lot from tight muscles constantly pulling in them.
I still get heart palpitations, but initially my heart would beat so forcefully that my chest just burned from it. Now it flutters and comes and goes.
I still feel fear for no reason, but it’s not the only emotion I can feel anymore. At first I couldn’t cry or laugh without feeling like somebody was squeezing my brain.
At two months I had all the Benzo withdrawal type symptoms really bad– especially intense burning all over. That seems to be fading. I never took a Benzo, but I had almost every symptom listed for Benzo withdrawal and I had them all at once at two and a half months out.
I still get nerve pain/numbness/weakness on the right side of my face, but it comes and goes.
If I exercise I get much more stiff and sore just in the muscles that were originally affected by the Cipro. I had tightness in various places that cleared itself quite quickly, but comes back now for a day or two or three if I exert, but muscles that were never affected (like my upper trapezius) react more normally to exercise. So after canoeing my wrists and forearms hurt like hell, but my shoulders were only mildly sore.
I occasionally have a relapse wherein I don’t sleep and can’t relax very well. It has always seemed that being relaxed can flare everything from the tight muscles to the burning to the tinnitus (which generally is better) but being up and active I can feel pretty normal at times.
I had one relapse at one month that caused my magnesium levels to drop dramatically again because I had stopped supplementing magnesium. With supplements I felt better again pretty quickly.
My standing tolerance is almost normal now, but for the first two and a half months standing more than five to ten minutes really hurt. I could do it, but it hurt.
I’m not as strong as I was, but that will just take time. I don’t have the stamina I had, but I am very functional.
The truth is there are 46 year olds who were never floxed who could not do what I’ve done in the past month: hike up and back down a bluff, paddle a canoe for a couple of hours, and last night I shot fireworks professionally. That involves a lot of grunt work– heavy lifting, lots of walking as well as tolerating explosions going off right near you and burning crap falling all around you. It was no problem. My most normal moment since Cipro was last night, hand lighting 3″ shells and training my nephew to do so. But when we got home my shower frightened me. I felt intense fear as I got into the shower. Because I was relaxed. When I was intensely focused and alert to danger I felt exactly as I always feel hand lighting a show. I was loving it.
Today my ankles are better than they usually feel, my left Achilles is sore and the rest of me feels like the fireworks truck backed over me. But I always feel that way after a show. And I did sleep this morning from 3 a.m. until 6:30, when the cat wanted his breakfast.
My remaining symptoms are more annoying than debilitating, and when I do relapse it doesn’t all come back. My symptoms worsen, but at times they get better. Being in nature and mild to moderate exercise helps. Listening to classical music helps. Cleaning my house makes me feel pretty close to normal. Typing like this is one of the worst things, but sometimes I can tolerate it pretty well. Other days I can hardly look at my iPhone screen because to do so causes an intense feeling of fear.
Cipro has made me completely nuts– hand firing in a professional fireworks show didn’t scare me, but my showering afterwards felt terrifying.
I just try to block out all the crazy symptoms and inappropriate fears and live my life.
That sounds like you at least got better, but most likely it’ll just take a year or so total for you to be 100% again since you’re doing everything right.
On a sidenote, do you also feel worse sometimes after taking a lot of magnesium?
I know that it’s a healing reaction but has anyone a scientific explanation as to why exactly it makes things worse temporarily?
I mean if mag binds to cipro it should get inactive right?
So where’s the flare up coming from?
(Tendon pain and anxiety)
Mark
Magnesium relaxes you. Without enough GABA receptors sometimes you can’t relax, so you get a paradoxical response to magnesium. Initially, magnesium could raise my blood pressure. Magnesium usually lowers BP. Why didn’t the ER doc wonder why I was getting a paradoxical response to magnesium?
Eventually, that goes away too. Your body really does need the magnesium. But your damaged CNS makes you react strangely to it. It gets better. I can take all the magnesium I want now and it will make me sleepy instead of agitated and my BP (with medication) is very well controlled now.
You want to know what’s really crazy Ruth?
I’ve been taking transdermal magnesium for almost 3 years now.
It was just the last 6 months that I got lazy about it and stopped doing it daily.
Then 4 weeks before getting Cipro I was supposed to get my shipment of ancient minerals.
So I would have had 4 weeks of magnesium saturation prior to the Cipro if it hadn’t been for an incompetent delivery man that lost the package.
Back then I obviously didn’t realize how important that package was for my future, so I waited for everything to clear up without ordering another shipment immediately.
Kind of crazy isn’t it.
But that’s not all.
I was supposed to go to a different ENT doc but she moved places and I didn’t remember her name, so I went to the one that seems to enjoy prescribing Cipro for a minor ear infection.
Afterwards I went to the one I was supposed to visit and she told me that she never has nor ever will precribe Cipro for an ear infection and that there are about 5 alternatives.
Yup that sucks.
Something unrelated.
Since 2 days the mag oil burns my skin a lot.
I never got it that bad when I was using it before, is that Cipro related or just dry skin?
Any ideas?
Mark
Both. The Cipro makes your skin more dry so you don’t tolerate the mag oil as well. My hands were so dry at first I could hardly stand it– skin cracking no matter how much lotion I applied. You can dilute the mag oil with water.
So many crazy coincidences leading up to a perfect storm. I believe God is in control and things happen according to His good purposes. Don’t beat yourself up about what you could have done differently. This will all pass. Maybe reading our conversations gave someone else comfort or needed information at the darkest time if their lives. You never know.
For everybody:
“Based upon
the findings of Lucy and Dingle,8 vitamin E
is now known to be a lysosomal stabilizer,
which would place it in the group of compounds
such as glucocorticoids and aspirin
which are anti-inflammatory agents 10, 15
and depressants to healing.3′ 6 Lysosomal
labilizing compounds such as vitamin A,
digitonin, testosterone and papain, stimulate
collagen synthesis and repair.5′ Of these
compounds, testosterone and vitamin A
have been shown to reverse the retarding
effects of glucocorticoids on repair.”
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1355132/pdf/annsurg00264-0089.pdf
Seems like high testosterone and Vitamin A both promote cell turnover and repair and can stop and repair adverse effects of corticosteroids.
Mark
hi mark,
so are you also saying that vitamin e is also helpful for collagen synthesis and repair? or is vitamin e something to be avoided since it is similar to a a glucocorticoid?
thanks,
jimmy
Ruth,
When you got the Cipro how long was it until you started MitoQ, Idebenone, PQQ and Magnesium?
Did your tendon damage happen before you did all this things?
Thanks,
Mark
Mark,
How about you?
How many weeks out are you?
Well, “months” is a bit more appropriate. I’m at 12 months. but as you know, everyone’s reaction is different. at 8 months i was walking, doing my own shopping, driving to the supermarket and cafe’s– i almost had my old life back — i felt 80 percent recovered. then in jan, at 9 months, i began walking more and doing light exercise. well, that might be good for some, but for me it was not. i had a strange reaction where i got very weak and could not get off my sofa. then all my symptoms came back with even new ones. new places/joints/tendons of pain. and now 12 month (almost 13) post flox, i’m having trouble walking anywhere but outside my house as it’s now my hip adductor tendons, which never hurt until a couple months ago. now, if i walk even around my house all day, i’ll feel pain that is 8/10 even while sitting. so i’m doing that fine balancing act, that i think we all know and debate about, do i walk more to build tissue, or do i stay put so i don’t do permanent damage. I’ll say this, most all of my symptoms from the first 6 months have gone away except for a little dizziness and certainly, i don’t have the “thinking stamina” i once had, being on the phones all day hustling up work as a writer. All this said, i do feel i’ll improve again and that i will regain my old self, but i’m just one of those whose recovery will be measured in months and years rather than weeks. and in response to the idea of walking, use, or going immobile, stretching, i would just second that you should be very careful. i actually believe my mito is at such a point that by beginning to stretch and exercise even lightly pushed me over the “threshold” set by the drug and i had that jan reaction. who knows. but i do try to walk every day and i actually walk till it hurts a little. but for me, that is walking in my home, making my own food and doing dishes, or walking 100 feet in the sunlight to go look at the beach i can no longer swim or surf in (temporarily!!). and the sun does help. i think it’s important to get outside, even to stand in the sun and be thankful this toxic “medicine” did not kill me. 🙂 i beat it there and i’ll beat it now…just as we all will. and make no mistake, the idea of “i know this medicine has helped many people and…blah blah” is flat out wrong. FQ’s are not fully understood, and do damage to our mito and joints and tendons and cells in ways we do not yet fully understand (though this are mountains of data on the harm we do know it does). It was even invented before we knew about or understood our own mitochondria. In most if not all other cases of where this drug is “last resort” there is an alternative of other alternative medicines, colloidal silver, platinum, and other alternative medicines as well as combinations of antibiotics and other medicines. i will never believe there is not a worthwhile alternative and if there truly is not, then the percentage of people must be so small as to be nearly infinitesimal and regardless, the FDA should make it clear and mandatory that the drug is only used under those conditions (as thalidomide is now for certain cancers, after it was taken off the market in the 60s for disabling so many babies.) I’m a bit off task but i’ll end with the hope part, which is the great wonder and benefit of this site and Lisa’s hard and unbelievably altruistic work — it does seem that most people recover and that certain supplements can be helpful in this, and the harder we work to understand and counteract what has been done the better chance of recovery we have. And most importantly, we have to work hard to get the message out there so no other people get hurt. We have to tell everyone we can and in that, there is hope for others and for ourselves. our community and support for each other is our hope and I get a dose of it every day, every time I come to this site.
The way I understand this is:
Vit A, Testosterone, Papain is good for healing and Vit E, Corticosteroids, Aspirin is bad for healing.
Mark
mark, have you seen this study suggesting vitamin e may be beneficial toward FQ toxicity, or at least joint tissues? i’m not great at deciphering this but it seems to also suggest fq’s damage glutathione production?
wow, that’s good to know. i keep reading how vitamin e is one of the 3 most powerful antioxidents toward ROS, after vit c and before vitamin a. so i thought it was helpful to us.
Yeah Jimmy I even posted one on Lisa’s recovery story page, where Vitamin C and E given to E. Coli bacteria before being exposed to Ciprofloxacin protected their cells better from the citotoxic effects of Cipro.
All I can say is that Vit C and Vit A both seem to do the trick and that adding supplemental Vit E to the mix MIGHT not be necessary and MAY be even counterproductive to healing.
That’s all I can tell you about that.
How’s it going for you?
MArk
Gonna post this here as well:
Just got a call back from a doctor my mother knows (she is also a doctor).
This doctor had a daughter that got Cipro for 10 days and had the same side effects as me (tendon-, muscle- and joint-pain, mild depression, tinnitus, etc…)
This doctor said that his daughter is cured 100%, meaning she is doing sports again, pain free, etc…
He treated her with Ibuprofen 3x600mg and pantoloc daily.
NOW I’M CONFUSED.
This doctor is the head of the the microbiologic department at a well known hospital and also the head of the “infectious disease working circle”, so he must know what he’s doing.
BUT isn’t Ibuprofen supposed to be counter-productive and even bad for Cipro sufferers.
IMPORTANT QUESTION:
Who here has tried Ibuprofen and maybe Pantoloc to go with it?
Did it help you?
Any worsening side effects?
Please @ all and Lisa let’s try to make this a long list of Ibuprofen experiences here, the way it sounds it was a complete treatment for this girl.
Mark
Hi. I’m new here. I can very well relate to the awful symptoms of Floxin exposure. I’m a 55 yr old mom of two and was prescribed Floxin in 1991 for a sinus infection and have never been the same since. I live in an area where Lyme Disease is high. Tested negative but was put on IV Rocephin, oral Pennicillin and Minocycline. Took the oral antibiotics for about 15 months. I was getting worse.
Over the years I was given antibiotics on and off for “Lyme, bronchitis, etc. In 2007 I had surgery for a billiary stricture, developed MRSA, hospitalized for three weeks and given IV CIPRO. In the hospital ,while being treated ,I experienced a torn rotator cuff.
While all this was going on I developed tendonitis of both shoulders, peripheral neuropathy, arthritis? in my thumbs. fingers, bones in my feet ,achellies tendonitis, and
just yesterday was diagnosed by my orthopedic surgeon with a right medial knee miniscus tear.
I also suffer chronic tender points, rib pain and insomnia etc………
Question:
is there any evidence that ligaament and or tendon rupture can occur
years after taking quinalones?
Thanks- Carolann
Do you take any transdermal or ionic magnesium and vitamin c Carolann?
Mark
Mark, did you take ionic magnesium? I took that and angstrom magnesium 2 weeks ago and I don’t know if it was the combination of one or both but I got super dizzy and even when I stopped it seem like it started something and now I’m in a off constantly so to speak. Be careful which supplements you introduce into your body.
Major depersonalizations and dizziness
Hey Jimmy what’s up?
Pico-Ionic magnesium (best being Remag allegedly) supposedly sets off an immediate healing reaction as the magnesium shoots straight into cells, kind of like a candida die-off.
Gotta try it for yourself for a couple weeks and see if the dizziness goes away after some time I guess.
Mark
Hey mark, we have to stop meeting like this. People are gonna talk! I make you brave enough to try the ionic magnesium again but I did it for about three or four days because I actually thought the dizziness was from something else. And frankly I don’t know what caused it. But it was pretty scary. You should look into the Angstrom magnesium as that is supposed to be Angstrom size, the smallest magnesium molecular magnesium you can bye. Supposed to get into the cells even faster than ionic. That’s why bought the two. http://Www.angstrom-minerals.com sounds good in theory, but one or both of these really screwed me up. I was also taking colloidal platinum in water. As that is supposed to have massive healing properties. So it could’ve been the combination. Or it could’ve just been old Mr. Levaquin rearing his ugly head and giving me a new symptom in month 13. Who know. 13. Has always been a lucky number for me so I’m thinking this is my turnaround month. I’m going to kick Mr. Levaquin and the teeth!
Okay sorry about the not making total sense. I won’t use Siri on my iPad anymore to post
did you feel the ionic magnesium got you healing right away? Did you have any dizziness at all?
Lol
I got a HUGE healing reaction each time.
Increased tendon pain, etc…
The Remag is Angstrom sized as well but got 60000ppm instead of the 3-9000ppm strength.
No idea which is better but I got pointed towards the Remag/Relyte/Realine combo which is really strong regarding the healing reaction (I cried like crazy the first time I tried all of them together, no joke before Cipro and all of this I never cried).
Anyways give it a try when you finished the Angstrom, maybe it’s better I don’t know.
I might give the Angstrom a shot as well why not?
I started with 5 drops and am slowly working my way up.
Mark
Mark, one other thing. Supposedly magnesium l threonate is the only mag with molecules so small as to enter the brain or access mitochondria. See mercola website. Have you ever tried it?
Mark,
I started magnesium immediately after my seventh pill (last dose) of Cipro because I was getting tinnitus and I had read that sometimes magnesium helps people with tinnitus.
Then I started reading more about Cipro and got the scare of my life. I ordered MitoQ, but it takes a long time to arrive because the company is based in New Zealand. I probably started MitoQ at two weeks out. I started Vitamin C at two or three days out– waited too long on that. I just didn’t realize that humble vitamin C could really do so much for me.
I had trouble finding Idebenone so I didn’t start that until sometime in month two. PQQ was even later than that– I didn’t find out about it right away.
My tendon got bad sometime in month two. Up ’til then I had tight gastrocs pulling on tendons, but I didn’t seem to have actual tendon damage. Then I started getting very intense, very localized pain. I’d feel a sensation like something tore, like a very thin layer of cells gave way, and then the pain would stop. This happened a few times. But then after a couple weeks of that things started to go the other way. The localized pain and the tearing sensations stopped, but my tendon got sore with almost any activity. Over time I could tolerate more and more. There is still a palpable bumpy place, but no pain and it tolerates normal activity just fine. It gets very mildly sore for a short time if I over exert now.
Right after my last dose of Cipto, the very next morning both Achilles’ tendons were so tight I could barely walk around or stand. The tendons felt brittle and crunchy. Just not normal at all. Whatever damage I had started then and continued because I was in oxidative distress without realizing it. It just took a month or two to start to really show up, as more damaged dells replaced healthy ones. But the antioxidants, magnesium and doing ultrasound turned the tide. It didn’t happen overnight, but it did go from becoming more and more damaged to gradually healing.
Hi Ruth thanks for the detailed infos!
I’ll keep it short as I’m in the car (passenger).
Which brand of vitamin c did you take and how much?
Liposomal?
Which kind of magnesium did you take (brand, amount)?
Did you ever take Remag, Angstrom Mag maybe Relyte or other products from Dr Carolyn Dean?
Regards,
Mark
Mark,
Forgot to tell you how much I took: initially I took A LOT of magnesium. I paid no attention to safe upper limit. I took it until my symptoms improved or I got diarrhea, whichever came first, and just kept that up for the first couple weeks or so. I took strong magnesium baths, putting in four to six cups instead of two as the package recommends.
But once my muscle tone came back to normal (somewhat), my skin stopped sagging, my teeth were less brittle and sensitive to temperature and I could sleep without my dreams racing by in fast motion– then I took less magnesium, keeping it to no more than 1,000 mg a day. Once in awhile I went as high as 1,200 mg, and I asked Dr. Whitcomb about it and he said that was no problem at all– I could go higher if I wanted with no danger.
But I know supplementing one thing too much can mess up other things, so now I’m more conservative with it, 400-900 mg a day.
Initially, I stopped all calcium supplementation in order to better facilitate return of magnesium into my cells. I also cut back on dietary calcium, but that was a mistake.
I think it is good to supplement magnesium but not calcium– but don’t be afraid of dietary calcium. The not supplementing calcium idea came first from a floxed organic chemist posting online, and from what I know of cellular biology it makes sense. But then Dr. Whitcomb said he usually does not ever have patients supplement calcium if they are able to focus on getting it from their diet. He has everyone take at least some magnesium. That’s backwards from how most MD’s do it– but the US has the highest rates of osteoporosis in the world, so maybe most MD’s are wrong.
Mark,
I took various brands of Vitamin C– just whatever was handy at the drugstore. Magnesium was the same initially and I took all kinds, just magnesium oxide at first, then better absorbed kinds. Now I take magnesium malate. The brand is Thompson– it comes in an orange bottle. Dr. Whitcomb sold it to me and said it would be better absorbed than anything else I’d taken.
I did order some angstrom magnesium and I have taken some of it, but I didn’t notice any difference from that compared to other types. Whatever type of magnesium I’ve taken has steadily helped me. I know some types are better absorbed than others, but I know that it ALL helped.
Also dietary magnesium is important. I eat salmon, yogurt, almonds and mozzarella cheese to increase dietary magnesium. Epsom salt baths and magnesium oil also help. I think it’s important to be aggressive with your magnesium therapy and just get as much into you as you can: dietary, topical and supplements (not just one or two, but all three) and to keep this up for at least six months to a year. That’s what the e-book on Levaquin tendonitis I bought recommended. I think they are right. You can’t stop pushing magnesium, even if you feel better. Not for at least six months, probably longer. No matter how severely or mildly floxed a person was, I think that rule applies: push magnesium for six months to a year. I think vitamin C is probably a close second, also requiring supplementation for an extended time.
Ok.
I take around 1200mg Mag a day now everything combined.
I’m 7 weeks out now and haven’t gotten into vitamin c much.
I tried the liposomal vitamin c but reacted to it (pain and bad feeling).
How much vit c do you take daily and do you react to it at all?
Mark
I never reacted to Vitamin C, Mark– only magnesium at times. I take probably 4,000 mg or more of Vitamin C a day. I started out at just 2,000. It seems like increasing it helped my tendon.
Ruth
Thanks for the info about the Mag and Vit C. I had done different kinds of Mag, Nothing worked but will try again. Also, Vitamin C puts me into some sort of herxheimer reaction with
worsening of insomnia. Probably a yeast die-off. I have tried many different supplements, which I could not tolorate.
Does anyone know the mechanism of action and how it relates to tendons,and ligaments?
Also, my dear sister has end-stage Multiple Sclerosis. I wonder if she had ever taken
floroquinolones in her life time. I wonder if there would be a connection.
Thanks to all
You have to go on about 1000mg magnesium and 4-10000mg Vitamin C a day, look for: ancient minerals magnesium oil, -“- bathflakes, Dr. Carloyn Dean’s Remag/Relyte/Realine or comparable products, liposomal vitamin c if you can tolarate it (or any other pure Vitamin C), B Vitamins, etc…
The reaction is most likely a healing reaction but please do consult a doctor if you’re not sure.
Further I’d check my hormone levels and consider starting HRT.
Regards,
Mark
Oh yeah ask Ruth about MitoQ, PQQ and Idebenone. 😉
Mark
Mark, thank-you for the info. I will try very slowly incorporating these supplements.
I am 55 but could not consider going on HRT due to history of stroke in my family.
Unfortunately, I think its really too late for me to reverse the damage. It’s been roughly 23 yrs of torture.
I feel so sorry for young folks dealing with this.
thanks again- Carolann
No problem.
Yep I’m 26 years old, student, have a loving girlfriend, worked part time with enthusiasm and was an healthy athlete that trained 6 days a week twice a day.
Now, as of right now, my life is over for me.
I hope that it’ll look different in a couple of weeks but it doesn’t at this point.
All of that because of an ear infection.
I had no fever, no pain…now I have nothing.
Mark
Hi mark, would you mind emailing me so we can discuss supplements, reactions,etc, different magnesium a, ways to recover etc. and I began magnesium at about 2-3 months after. I had a reaction a month after I finished the fq’s.
Jimmy
Oppppsss.. Jimmybruhl@gmail.com
Hi mark, would you mind emailing me so we can discuss supplements, reactions,etc, different magnesium a, ways to recover etc. and I began magnesium at about 2-3 months after. I had a reaction a month after I finished the fq’s.
Jimmy
I know I’ve been floxed, I was in the hospital just 1 week after taking a 4 day run of cipro. Chest pain, nausea, vomiting, burning, cramping, ripping muscles. Headaches, pressure in my head. Severe Panic attacks, insomnia ect. I need help horribly. I’ve been in such despair for 2 months now, no where to turn. Could you tell me where you went for your iv treatment? I live in Lincoln park, Michigan. Please! any help would be greatly appreciated.
Hi Elisha,
Here is a web site where you can find a functional medicine doctor – https://www.functionalmedicine.org/practitioner_search.aspx?id=117 Functional medicine doctors are the ones who do glutathione IVs. Here is a doctor referral list too – https://floxiehope.com/2013/12/11/doctor-referral-list/. Also, Ruth’s functional medicine doctor helped her a lot. If he’s close enough to you, maybe he can help. Here’s her story – https://floxiehope.com/ruths-story-cipro-toxicity/.
Hugs,
Lisa
Hi Elisha,
First please don’t be scared. There are ways to get better and you’re early on so there’s hope to catch it before it gets bad. Lisa’s links are good. I live in Canada and my IV treatments were administered by a naturopathic doctor although I know their permissions vary wildly from place to place. (Certain provinces in Canada don’t let them do IV). You could always search your town or city and glutathione IV in Google. I hope you get better!
My email is posted somewhere up there in the comments ^ if you need someone to talk to.
For everyone else I just wanted to update I’m 10 months out and I am continuing to get better. I had a milder relapse for 4 weeks in September but that has stopped. I even went out dancing on Halloween all night and zero pain! 🙂
That’s good to hear Tamara.
I’m in my 6th month and so far nothing improved.
Still the same tendon pain as day1.
What I take:
3000mg lipo vitC
Magnesium oil, angstrom magnesium
1 drop 12% Lugol’sche iodine transdermal
200mg selenium
Caprylic acid, bentonite, psyllium powder
Slippery elm bark
Apple cider vinegar
Probiotics
Further I’m on a diet consisting solely of organic chicken, eggs, salads, olive oil, brown rice, oats, sweet potatos and vegetables.
What am I missing out that could better this damn tendon pain?
I was soo athletic before it’s comical what I’ve become.
Mark
Hey Mark,
I would say collagen would be a good one to add. I added in homemade bone broth from chicken later on as I started to walk. Ate it everyday a cup full. Besides it’s yummy. I haven’t taken any supplements other than regular ones I’d taken before floxing in months. You can also take supplements of the collagen.
I have heard good reviews from other floxies about that.
Also, for pain and inflammation turmeric and francincense are good. I managed to find pills that had both called Boswellia complex. Boswellia is another name for francincense.
Again, I have heard many floxies say they used both these herbs too.
Mark did you ever try to do glutathione?
And I just thought of something else. Physio very gently with ultrasound on my tendons seems to help a lot.
rainbow, physio helped me a lot. stretching, massage, treadmill. also did glutathione and i feel it helped. i also did an iv of vitamins, magnesium, and amino acids on a weekly basis which i think helped, but i don’t think it’s wise to do super large amounts. i believe one of our issues is absorption, so iv’s can be helpful, at least for me. The glutathione helped mostly with pain for me.
Hi Jimmy,
So glad that Glutathione helped! 🙂 and you can call me Tamara. That’s my story up there ^ it just posts from my personal WordPress account 😉
so glad u r feeling better atleast someone is recovering well
Jimmy- How are you doing these days? I know you had quite a setback 10-11 months ago I believe. Am I to assume that glutathione IV and some physio has brought on improvements since then?
I have to tell you all that my injuries came 2 years after my dosing of Cipro in 2012. After that first hit, I was left with residual, minimal neuropathy of my feet and ankles. Minimal, in that most of the time I did not even recognize it. Then, in 2014, while coming off the summit of Mt. Tebo in the Olympics (previously I was quite the active 59 year old), I simply stepped down and my left ankle’s ligament and tendon structure blew out, causing my fall and the break of the fibula. So, just because I was technically 2 years from the date of exposure, it did not confer immunity from ruptures. At least I am walking now. Still lots of difficult symptoms everywhere in my body though. Not sure if I will ever get back into the mountains again, but am still riding horses. At first I just wanted to die….truly. Have now moved into a more existential place.
I’m so sorry for the pain that you have been through, Jana, and thank you for telling your story. In some ways, I hate to hear stories of long-term damage and effects that are delayed for years. The stories are true though, and they are a warning to all of us.
I’m glad that you are still riding horses and that you have moved into a more existential place. Everything that these drugs steal from us is horrible. Hugs to you!
Regards,
Lisa
Oh my gosh your story is a glimmer of hope! I go in for my first glutiathone iv tomorrow. Ive heard amazing things about it. Thank you for the positivity. I was floxed a month ago. Anxiety, depression, insomnia and muscle twitching with some neuropathy and short of breath. I have a small child I feel so nervous to be alone with because my body and mind are taken over by this anxious poison. I just want that feeling to go away! Best wishes hope you’re 100% now!
Seager — how are you doing now?
After being on iv cipro and iv ceftraxione for a month, I couldn’t walk across the room and then my entire body broke out in solid rash. So they stopped all antibiotics and I was left in pain and barely walking and with nothing to stop the infection they were afraid had entered my skull. An ent told me that my gut had been destroyed by the antibiotics and that I would need a high dose (very expensive) probiotic for at least two years. Ended up discovering kefir grains used to make my own kefir (very high in probiotics, certain vitamins, and readily used by the body). Drank 2 cups kefir daily and yogurt, along with taking 1000 magnesium citrate every night. With the kefir, skin conditions improved, pain in legs lessened, I could eat more things again. It has taken two years and I can hike limited again. If I don’t stay on the kefir (at least 1 cup) and the magnesium, I do have problems so I just try to stay consistent.
I just want to say thanks to everyone..I have learned so much from all of you…it is kind of Trial & Error…I feel so sorry for all of you…I just have heel tendon pain…but it is getting better..some what…We just have to keep the faith that someday we will get better…but I will never take FQ ever again…I was given Levaquin along with Steroids…it could have been a lot worst…Good Luck to every one…
Hi Tamara thanks for sharing your story. Do you remember getting heart palpitations with cipro? Im having strange fluttering in my chest. Im supposed to start the IV glutathione but scared.
I wish you 100% wellness soon x x :)’s Could you Please indicate which Brands of items you took/doses on ones not mentioned thanks p.s. u r very beautiful I hope you stay well :)’s best of Luck hugs Aidan :)’s
Hi, I just finished a 5 day dose of 750 Levaquin a week ago, and am having muscle weakness, sore joints, and neuropathy (burning pain) in hands and feet, as well as brain fog. Am taking Magnesium (800) and supplementing with NAC and turmeric to boost glutathione. Am I missing something specific to neuropathy? I understand MitoQ and PQQ to be good for mitochondria/fatigue but am wondering about the neuropathy.
Hi there, I heard that R-alpha lipoic acid is supposed to be good for neuropathy, I don’t think its a miracle for neuropathy but I have heard good things in reducing it somewhat.
I’m so glad you found a path of healing. At age 60 I’m listening to my body and allowing the medical profession to assist in its health.
Donna, are you floxed! If so, when and what symptoms are you experiencing? Are you getting better?
Please tell me who treats this. We live in New Mexico and no doctor will diagnose this. We believe this is whzt is happening to my mom. Thank you!
There is no ICD10 code so you cannot get a diagnosis. Without a diagnosis the doctor cannot treat you. Insurance will not pay if there is no diagnosis. Fluoroquinolone Associated Disability (the term coined by the FDA) is not a diagnosis any doctor can give you. Without an ICD10 it does not exist.
I have found treatment but I had to pay out of pocket. The doctors I have seen are not part of the mainstream. They do treatments like IV Vitamin C and magnesium and frequency specific microcurrent. Be advised that protocols that work for one floxie can make another much worse. Even if you go outside the mainstream for treatment there is no standard treatment that works for everyone.
If you look for doctors who do things like FSM, Meyer’s cocktail IV’s, and ozone therapy you will likely find doctors who are more likely to accept the damage was done by an FQ, but this does not mean they know how to treat it. Even if they treated floxies before, what helps one can harm another.
The Ancestry DNA test provides valuable information. There is an app available through this website: https://mthfrsupport.com/ that will allow you to run the info from the DNA test through it and find out some things. If you need more the creator of the app, Sterling Hill, does consults for a very reasonable fee. She provides a fifty page report. You take that info to your practitioner to guide treatment.
So if you find docs in your area doing treatments you do not normally see, that are not covered by most insurance, and then find one willing to admit it is FQAD, you can take the info from Sterling to them to guide treatment and avoid the backfires that have nearly killed some floxies. This is the only safe way.
That being said, I did the “throw everything against the wall and see what sticks” approach and I am doing ok. But if I were just starting out today fighting this monster I would get the DNA test and find out what I was dealing with and specifically what my body needed.
It costs a lot of money to treat FQAD, since insurance is not going to help you. Most people get better with time and there are some things that seem to help most, but not all people.
Ruth