To my dear friends with chronic Lyme Disease,
I am so sorry for all that you are going through! The pain, the exhaustion, the fear, the frustration – all of it. My heart goes out to all of you!
I know that treatment options are a touchy topic, and that antibiotics are often a necessary part of dealing with Lyme Disease. However, I’m going to jump right into a volatile sea and say, PLEASE, please, please be careful with antibiotics, and know that they are not all created equally. Fluoroquinolone antibiotics – Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin and Floxin/ofloxacin – are chemo drugs that can do absurd amounts of harm. I would hate for you to have to deal with two chronic illnesses at once – chronic Lyme and Fluoroquinolone Toxicity Syndrome. Both are horrible.
Words of Wisdom from a Floxie with Lyme
A few comments on this site, from people who are dealing with both chronic Lyme Disease and Fluoroquinolone Toxicity, are more illustrative than anything I can say. Here is a comment from my dear friend Catherine, who has been dealing with Lyme Disease for 18 years and Fluoroquinolone Toxicity for 2 years:
My situation is complicated, because I have been wheelchair bound with lyme and co infections for 18 years. I have had about 400 doses of Cipro and 12 days of avelox. I actually got quite a lot better on the cipro for about 4 years, before deteriorating again. Unfortunately, I didn’t realize it was the cipro – because I had done well on it before, it never occurred to me that it was now harming me – and carried on taking it for a year or two after I was first floxed. I then took nearly two weeks of avelox which finished me off, and I have now been bedbound for the last 18 months. I only made the connection between FQs and my health 12 months ago, when I took my last avelox.
I have had massive CNS and PN symptoms. Over 100 symptoms in all. Some digestive issues too. By Christmas last year I felt that I had stabilized, but have recently developed new symptoms of dry eyes and receding gums.
Other aspects have improved – anxiety and panic attacks have lessened somewhat, and most nights I get 6 or 7 hours solid sleep.
Obviously, I’ve got a lot of damage to repair, and a long road ahead. This summer I have managed a few trips out in the car, which is more than I could do last summer. I have two young children, so I have to keep going for them!
She added, in a different comment on another conversation:
I had chronic borrelia and rickettsia for years before I began antibiotics. I then took FQs for years, and did well for a while. But at some point (I can’t be sure exactly when) I stopped doing so well and felt I was no longer responding – not just to FQs but to all the other antibiotics I was taking. And so the doctor gave me different and stronger FQs until eventually I became totally incapacitated and finally made the connection between FQs and floxing etc. I still don’t understand why the rickettsia/lyme now seems untouchable by any antibiotic. I would have thought after nearly 10 years of FQs I would have no infection left, but it’s worse and more virulent than ever. I can only guess that the FQs have effected a change in the rickettsia bugs themselves.
Tolerance Thresholds for Fluoroquinolones
Many people have suggested that fluoroquinolones bring out latent Lyme Disease. I don’t know if this theory is true or not, as there haven’t been any studies (that I know of) trying to prove that hypothesis.
What has been shown to be true, however, is that fluoroquinolone antibiotics severely damage cells. The parts of cells that are most damaged by fluoroquinolones are the mitochondria. Mitochondrial damage is tricky in that both delayed adverse reactions, and tolerance thresholds are features of drug induced mitochondrial damage. Thus, as Catherine’s comments illustrate, a drug that was once well tolerated can harm you the next time you have it. (More info about tolerance thresholds for mitochondria damaging drugs can be found here – http://www.hormonesmatter.com/fluoroquinolone-time-bomb-mitochondria-damage/.)
Everyone’s tolerance threshold for fluoroquinolones is different. Some people develop Fluoroquinolone Toxicity Syndrome after taking one pill. Other people can handle hundreds of pills before their lifetime threshold is reached. After an individual’s threshold is crossed though – the multi-symptom, chronic illness of Fluoroquinolone Toxicity results.
Delayed adverse reactions make it so that, often, people don’t even realize that they’ve crossed their tolerance threshold for fluoroquinolones until they have taken too many pills and the bomb in their body has gone off. It’s Russian Roulette – but you can pull the trigger and release more and more bullets after the one that starts the reaction goes off – and each additional bullet does additional damage.
The symptoms of Fluoroquinolone Toxicity Syndrome are very similar to the symptoms of chronic Lyme Disease – pain, fatigue (um… bedridden exhaustion is more apt), insomnia, aching joints and muscles, decreased cognitive abilities, anxiety, depression and other psychiatric problems, etc. The similarities between the two make it difficult to distinguish one from another. They’re both real and they’re not mutually exclusive. Some people even surmise that they’re related (but, like I mentioned above, I’m not sure about that).
We’re in This Together
Humans like to break things into categories. It helps us to understand them. But, rather than attempting to convince you that your symptoms are from FQ toxicity, or listening to arguments that I might have latent Lyme, may I suggest that we all listen to Rene’s words of wisdom (also from a comment on www.floxiehope.com – Rene has also dealt with both Lyme and fluoroquinolone toxicity) :
Be careful about getting married to the disease label: “Look at the systems involved.” The massive amounts of data that I have combed through, during the years of illness, (before I was retested & given the diagnosis of Lyme), unveiled the commonality of all these illness or chronic conditions. If you have Lyme, MS, Fibromyalgia, Chemical Sensitives, Flouroquinolone injuries, Cancer it is a cellular issue of detoxification and efficiently utilizing the bio nutrients, the raw material we are made up of that send those signals & then receive the messages. The terrain is everything, which is why everything we eat and absorb is signally the terrain. The beliefs we have, what we covet and worship. How to improve the terrain and the function of these systems. Send the right signals and receive the right signals.
She also wrote:
the most beneficial & healing things you can do for Lyme are tantamount to doing much of what Fluoroquinolone injured do.
I know that for FQ toxicity, there is no one single “magic bullet” cure, but that many different things help people. Some people are helped by a clean and healthy diet full of vitamins and minerals (Douglas recovered with the help of a healthy diet), some are helped by glutathione injections and liver cleanses (Richard was), Some are helped by antioxidant and mineral supplements (Ruth has some excellent antioxidant supplement advice), some are helped by alternative medicine (my acupuncturist helped me a lot) and most are helped by a combination of approaches. All of the approaches are holistic and affect multiple systems. Multiple systems with multiple negative feedback loops are broken by fluoroquinolones, and by Lyme spirochetes. Systems break down with both diseases – and those broken systems break other systems. The negative feedback loops are complex and difficult to fix. But I thoroughly believe that the innate positive feedback loops are stronger than the negative feedback loops. I hope that this belief is true.
All of us “spoonies” with under-recognized, systemic, often chronic illnesses have more in common than we don’t. I hope that the stories of hope and healing on this page resonate with anyone with Lyme or any other chronic disease who reads this.
Back to Lyme and Fluoroquinolones
Perhaps I’m biased because fluoroquinolones hurt me, but I can’t believe that a drug that depletes mitochondrial DNA, leads to a massive amount of oxidative stress, depletes intracellular magnesium and decimates the microbiome is helpful to people who are already suffering from a chronic illness. I understand that the Lyme bacteria need to be fought, but destroying your cells seems like a lousy way to do it. (Interestingly, it has been suggested that tetracyclines, including doxycycline, are supportive of mitochondria whereas FQs are destructive.) You need healthy cells in order to fight. How to improve the health of your cells is a really difficult question and I don’t know the right answer. I’m pretty sure that fluoroquinolones aren’t the answer to much though – certainly not for chronic Lyme Disease.
The main thing that I can ask of my friends with Lyme is this – please be careful. Don’t think that the side-effects of drugs are “rare” or that they won’t happen to you. Know the potential for chronic multi-symptom illness that comes with each fluoroquinolone pill, and if you choose to take Cipro, Levaquin or Avelox, do so with your eyes wide open. Informed consent is, after all, quite important.
May you all find healing.