Dear Stephen,
I very much enjoy your books. I’m being treated for lyme, bartonella and babesia. Two years ago, before I had lyme, I suffered an extreme adverse reaction to cipro – widespread tendon and cartilage damage, neuromuscular weakness, neuropathy, etc. I am still suffering with tendon issues that have taken away running, hiking, working with my hands (I was an acupuncturist), etc., possibly permanently. There are many thousands of us – medicine often denies the catastrophic nature of these adverse drug reactions (ADRs) – we are referred to as being “floxed” (ciprofloxcin, levafloxin, etc. – all quinolone drugs). My question: cryptolepsis was prescribed by my lyme doc for babesia. Reading your new book excerpt they seem to share the same mechanism of being topoisomerase inhibitors and messing up DNA replication. I am scared of taking cryptolepsis because of the extreme damage caused by cipro (a topoisomerase inhibitor). Do you know of any connection between crypto and cipro/quinolone adverse effects. I feel like I am starting to have some electric neuropathy pains after using cryptolepsis for a week (and BAB-1/artemisium for about 4 weeks). Could this be herx or an escalation of damage that cipro did to me? Thanks.
I very much enjoy your books. I’m being treated for lyme, bartonella and babesia. Two years ago, before I had lyme, I suffered an extreme adverse reaction to cipro – widespread tendon and cartilage damage, neuromuscular weakness, neuropathy, etc. I am still suffering with tendon issues that have taken away running, hiking, working with my hands (I was an acupuncturist), etc., possibly permanently. There are many thousands of us – medicine often denies the catastrophic nature of these adverse drug reactions (ADRs) – we are referred to as being “floxed” (ciprofloxcin, levafloxin, etc. – all quinolone drugs). My question: cryptolepsis was prescribed by my lyme doc for babesia. Reading your new book excerpt they seem to share the same mechanism of being topoisomerase inhibitors and messing up DNA replication. I am scared of taking cryptolepsis because of the extreme damage caused by cipro (a topoisomerase inhibitor). Do you know of any connection between crypto and cipro/quinolone adverse effects. I feel like I am starting to have some electric neuropathy pains after using cryptolepsis for a week (and BAB-1/artemisium for about 4 weeks). Could this be herx or an escalation of damage that cipro did to me? Thanks.
Stephen’s response:
I don’t know of any connection between that pharmaceutical and cryptolepis. And I have not heard of anyone having that kind of reaction to it. If it really does concern you you might try alchornea (or sida) instead of the cryptolepis, it is just as specific for babesia. If you do use sida, begin with a smaller dose and work up, some people respond very strongly to it and just lowering the dose makes it easier to take. I don’t know why you would have those symptoms from the cryptolepis, however, artemisinin can cause neurotoxic impacts on the nervous system in various ways. This is rare and usually only occurs after long term use of a year or two. But it might be that. As to the tendon and cartilage damage, you might try glucosamine sulfate with MSM to help that, 1500mg 2-3x daily. I have found it helpful.
I don’t know of any connection between that pharmaceutical and cryptolepis. And I have not heard of anyone having that kind of reaction to it. If it really does concern you you might try alchornea (or sida) instead of the cryptolepis, it is just as specific for babesia. If you do use sida, begin with a smaller dose and work up, some people respond very strongly to it and just lowering the dose makes it easier to take. I don’t know why you would have those symptoms from the cryptolepis, however, artemisinin can cause neurotoxic impacts on the nervous system in various ways. This is rare and usually only occurs after long term use of a year or two. But it might be that. As to the tendon and cartilage damage, you might try glucosamine sulfate with MSM to help that, 1500mg 2-3x daily. I have found it helpful.
Stephen
I have been on hydroxychloroquine and went thru several stops/starts before giving it up due to the same symptoms, especially tendons that lock up,which now only get slightly better periodically. This year I tried cryptolepsis as an alternative and got the same results. These things also seem to create a lot of liver congestion, which I assume is partly die off. I cannot come close to using the amounts recommended and have given them up.
My known infections are Lyme’s & Q Fever, but having studied West Nile, my guess is that a particularly severe summer resulted from this, as well, following a bug bite. Glucosamine sulfate was much more helpful prior this very severe episode, and osteoarthritis quickly became much harder to control all around.
Hi Joanne — yes, I got increased tendon and joint pain after using cryptolepis (and I think, a rash, too + electric neuro pains) . . . I had serious reaction to Cipro two years ago (quinolone antibiotics that are also topoisomerase inhibitors messing up DNA replication) . . . I actually think that I would not have chronic tick borne infections now if I had not been hit so hard by adverse reaction to Cipro two years ago – it weakens the bodies cellular energy making mechanisms and leaves us susceptible to opportunistic infections . . . at least a couple of my docs (the one’s who know Cipro is evil) agree with that. There is a higher than expected number of people on the fluoroquinolone support boards who also have chronic lyme / co-infections. While the cryptolepis flared those up, I’m sure if I had taken cipro again it would have killed or crippled me.
Hello.
I had the same ADR to levaquin/cipro and can no longer tolerate cat’s claw or abab or cyrptoleptis. Unsure of the chemical reason, whether quinovic acid similar or other mechanism. Reach out to me by email and let’s compare what we can and can’t tolerate.
Hi Michael (W)- (assuming this is you) yes, it’s me, Tim, from the FQ facebook pages. Interesting – you had symptoms from cryptolepis, too. . .as I understand it, cryptolepis and sida acuta both have constituents that are topoisomerase inhibitors (like cipro, etc) . . . I am going to try alchornea for babesia now and cross fingers . . . sorry for slow reply I only just today saw this comment. . . i must not be getting email notifications about comments (not sure if we are supposed to get them) . . . .I’m taking artemesium (Bab-1 and then pure encapsulations capsules) but not cutting it for babesia so far . . . let me know if you get this . . .you can write me on FB if this is the same Michael . . .Tee Rhudy
Hi Tim,
Did you have any success treating babesia without hurting your tendons, if so what did you use?
Thanks
Hi Michael,
I’m also a FQ-victim (took Levaquin 3 years ago with severe ADR). I started the Buhner-Protocol some weeks ago, and now my achillodynia is getting worse again. Could you please tell me which herbs / tinctures you couldn’t tolerate?
Thanks!
For babesia I took artemisinin for a year which kept the symptoms somewhat at bay but did not erradicate it. Now have been on cryptolepis for 6 weeks and not noticing any improvement. I still have episodes of illness. Do I need to up dosage (am on 30 drops a day) or give it more time? Just got sida acuta and wondering if I should had that in as well? Any advice would be appreciated!
Different for me. I feel like if I was able to take Cipro, it would take remove this blockage I feel at the base of my brain. I have not been able to take antibiotics because I got C-Difficile right at the gate when starting to treat Lyme. I wonder why, before I got Lyme, it lifted that feeling from my brain. I doctor has originally prescribed it for a bladder infection, but I did not know I had Lyme then.
My theory as to why ppl taking these herbs AFTER having taken fluoroquinolones are getting a recurrence of symptoms is that the fluoride from the drug is embedded and is being set free when the herb (which works with a similar mechanism) targets those same areas.
The fluoride then moves on to new locations and causes more damage. IOW, it could be the fluoride in these drugs which are causing the most problems.
Fluoride is the most reactive element in the periodic table. Do a search on it to see all of the damage it does to the body.
Possibly supplementation with iodine and boron when taking these herbs (and in general to heal the damage from being floxed) may help if they do indeed free up the fluoride to do more damage. Both boron and iodine displace fluoride from the body tissues. The iodine binds with the fluoride and it is removed from the body in urine.
How do you take in a safe amount I took cipro and have diagnosised with Lyme and do not know which is causing my costrochandrtis and brain fog fatigue and peripheral neuropathy is it Lyme or cipro? My llmd wants to provoke babesia with artsemin freaked out right now don’t want to get worse I don’t know what to do
Susan I healed my costochondritis with Bryonia homeopathic. I was severely injured from both Cipro and Levaquin also.
Dave,
I have a 28 year old son who has had the “fight of his life”, these past two years. I am an NP, and feel I should be better informed, or at least have the knowledge to heal my son from this horror. He was given Cipro 500mg po x 2 weeks for a uti, and prostate enlargement…( at 28 prostate enlargement is pretty darn rare, and as it turned out the senile Urologist was incorrect in his diagnosis. Why Cipro or any flouroquinolones are not taken off the market is a mystery to me. If we only could go back and do it over again.
I was just wondering where you got your info regarding the Flouride reinitiating the Cipro affects again? I have tried everything to heal my son from being flexed, and it has been horrendous. His tendons are “like squishy elastic rubber bands”, he could barely walk a year plus ago. He is a nervous wreck, never had any overt crazy psych symptoms, however panic attacks are commonplace. I see Iodine and Boron help Cipro damage, I’ll have to read Steph’s post.
My son, who was an avid angler, hunter, walker etc. was always in the woods. He noticed a tick bite or two, no bullseye. He cannot tolerate antibiotics, but tried to take the initial doxy( vibramycin) just in case.
He has a negative lyme test, except his bartonella came back positive.
I am thinking of trying the uvarx IV therapy, that his acupuncturist has tried, And the Naturopathy MD has prescribed an antibiotic for him ( Bactim) to be quartered, ( we are taking this slow)! My concern is that he is so sensitive, and i am so scared of reintroducing any copra symptoms again. Good Lord, I have tried so hard to get him better, the poor soul. (The bad thing is people don’t believe you, he lost a fiance, a job, …… his zest for living. I just want my son to be well! I will do anything!
If anyone has any working treatments for reversal of Cipro toxicity, and concurrent tx of Bartonella,,PLEASE let me know. Thanks so much!
Cipro patients who have been floxed, should be legally compensated for this.
Perhaps, now, Docs will listen. I have lived it with my son, so I would shout it from the highest mountain….”DON”T TAKE CIPRO, OR LEVAQUIN>>>> they are evil. (I have seen this firsthand)… it needs a blackbox warning that states…”Throw this in the garbage.”
Bert, I’m assuming you’re aware of the Facebook groups for Levaquin, Cipro and Floroquinolones. If not just search each word and join some of the groups. I didn’t have the tendon issue but thought I was dying. Horrible nasty drugs!! After about 7 months I found a doctor at Gordon Medical in Santa Rosa CA that had me do IV detox 4 X week for 4 weeks. Twice a week it was Glutathione. I now have my life back. It got me past the panic attacks, anxiety, dehydration, weight loss, sharp tendon pains etc. Find a functional medicine doctor or clinic that does IV therapy. Best of luck!!
I am very sorry to hear about your son. I was prescribed C—-
For a bacterial infection and within days I was having ringing i my ears.I called my physician and thank God he told me to stop immediately,as it was a neuro side effect. I am thankful I did not take it longer. That said I still have a slight ringing in my ear that comes on from time to time. The symptoms and side effects for me have been I was lethargic lost weight in that year, I also suffered a minor tendon tear in my knee which happened as I bent down to put a bag on floor! I felt it when it happened.Anyways I know I was floxed to a degree, and it damaged my stomach as well.My bowels have not been the same. It probably killed all my good intestinal bacteria. So what I did was took alot of NAC and anything that increased Glutathione in my body like green tea,resveratrol and sulpher foods and supplements . iA good one I like is by source naturals called Tumeric,MSM ad devils claw. Its very good for inflammation. I really had to increase my good bacteria as antibiotics eradicated alot of them. In my research I have founfd that immunity is in your stomach and blood. So it makde sense to insrease my stomach flora. Also increase red blood cells as they are the immunity of out body. There are multiple ways to do this. You can take chollera just start slow as it detoxes also. There is a herbalist who says that a 7-10 day organic orange juice fast will increase RBC count 6x . Now this was back in the 1930s when a medical doctor was curing patients with all sorts of maladies with this cure. And they tested the blood and it proved to increase RBC 6x! thats ALOT. So you can look up for yourself. Anyways I hope this encourages you,and your son. I am not a physician I am just sharing my experiences.
I have had CFS for a long time. Likely related to service in the first Gulf War (Gulf War Illness/Syndrome). Initially, in the 1990s, I had several weird bouts of numbness/tingling/ weakness and intense pain lasting days to a full week, with no explanation (in addition to intermittent CFS symptoms). In 2001, after an bad upper respiratory illness, with intense coughing lasting for weeks, I was prescribed antibiotics. I don’t remember which ABX it was, but it triggered all of my symptoms to a whole new level, including constant CFS symptoms, as well as full on intense numbness/electrical pain throughout my body for 6-7 months, before slowly subsiding. Since, I have experienced the same electrical sensations on occasion, but never as severe. The CFS has remained. Being that mycoplasma bacteria is one of the leading theories as the cause of GWS, I decided to try Crypto. Also, I decided to try Stephen’s formula of herbs for CFS (which address EBV I believe). I tried them separately, starting with, and maintaining, very low doses. Interestingly enough, on each I felt really good the first week or so. But with the EBV herbs, I then developed the same prior numbness, weakness, and tingling sensations I have had before. It is very painful and intense, and too much to tolerate. With the Crypto, after feeling good I then started getting really sick. Sore throat, congestion, coughing (the same intense type that lasts for weeks) and then, once again the intense numbness, weakness, and tingling returned. It seems to generally start in my mouth/face area and radiate down into my arms and hands, and then into trunk and legs. I was researching this and thought it sounded similar to some type of Guillane-Barre Syndrome (an auto-immune reaction in which the nerves are attacked). In recalling my first episode of the numbness/tingling, it was not long after a bought of food poisoning (which is highly associated with Guillane-Barre). Also, Guillane-Barre is associated with mycoplasma infections and EBV as well. Sorry for such a long post, but I was just curious of others thoughts on this. I wonder if it is possible the treatments are addressing the pathogen (which then in turn activates the immune system?) but in some people it also triggers some type of auto-immune reaction (in particular against the nervous system?). And if so, how to address this catch-22 situation so to speak, as its obvious I think an immune response is necessary to address a deep seated pathogen.
Hi Jeremy, Thank you for your service, so sorry to hear you are ill. Have been ill since 3 tick bites, treated at onset & later unsuccessfully with antibiotics plus supplements. Tests indicative of lyme, + Bartonella, EBV, H-Pilori. Later developed vascular problems, dysautonomia, neuropathy. Seems the bugs have affected my vascular & nervous system. The vascular issue was diagnosed by an ANCA test which also showed positive myeloperoxidase. Also have an issue with deficiency in immunoglobulins A & M. I was told the vascular & nervous system issues were likely caused by the pathogens. Also have issues with thyroid, HLA DR genes & MTHFR. Certainly a “catch 22”. Saw your post trying to look for options. Someone very close to me has GWI with Parkinson’s. Praying for our Vets & wish you the best.
Hi Jeremy,
Did your issues get resolved? I’d recommend starting Lion’s Mane 1 1/2 tsp 2x day for at least 1 month before restarting Crypto. Also, tons of fish oil, a good one, like Nordic Naturals, at least 3-6g per day as well as Acetyl L-Carnitine 500mg 2-3x day. What’s you b-status? You might also need some B12.
s
I have tinnitis that is increasing. I have read that this is possibly a symptom of Lyme but I can not find possible remedies for it. Any suggestions?
Hi Linda,
The Buhner Healing Lyme Q & A is now closed to new questions. You can search the archive to see if he addressed this symptom in the past: http://buhnerhealinglyme.com/?s=tinnitus. Best, Julie