14 months ago, a 47 year old male first consulted with me. His illness started after a physical injury sustained working in his garden. He first developed low back pain -- diagnosed as a strain. He went on to develop knee pain, fevers to 102, a red streaky rash on his abdomen, sweating and color changes in his fingers. He went to the ER: he had been ill for 3 weeks. A two tier, CDC surveillance test was positive for Lyme. He was treated with 3 weeks of Doxycyline and felt better. His past medical history is positive for Chrohn's disease.
Three month later he developed recurrent, progressive symptoms -- muscle pain -- increasing joint pain -- profound fatigue, and, drenching night sweats. New neurological symptoms appeared: numbness and tingling, memory loss and cognitive dysfunction.
He presented to me for further care. A 13 band WB showed 3/3 IgM bands. Non diagnostic Bb IgG WB bands were present. He was seronegative for Babesia microti/duncani. He was treated for chronic Lyme disease and Babesiosis, diagnosed clinically.
After many months of antibiotic therapy his disease is in remission, still on antibiotics.
Additional data: C6 peptide ELISA had been 6.41 initially and is n0w 2.3. C4a levels have been elevated. CD 57 levels have been normal. A wet mount showed no bacteria.
His previously active inflammatory bowel disease is now quiescent. A recent colonoscopy was normal.
Three weeks of Doxy for acute Lyme failed. This may be more frequent that commonly held. It has been suggested by some that this is due to co-infections. I am not sure. The average person, with an intact immune system, should be able to throw off both Babesia and Bartonella.
Perhaps in some cases, Lyme is able to sequester itself quickly. Other explanations may be offered. Perhaps in some, already-infected asymptomatic patients, clinical Lyme is triggered by a new infection. The other possibility is a bit more frightening. Perhaps strains of Lyme are now resistance to Doxy. This could explain some Doxy failures with response to other treatments, such as Amox/Biaxin. This patient did respond to Doxy at first. But, partial resistance is know to occur with other bacteria. This is all thinking out loud conjecture.
Lyme disease is associated with a multitude of autoimmune diseases. Crohn's and ulcerative colitis are both autoimmune diseases. Coincidence?
15 comments:
My son and others I’ve known of had Crohn’s like presentation and a bartonella infection. In my son’s case he was dx with CD after biopsy. A couple of years later after he was dx with Lyme and had positive Bart. titers, we had the intestinal biopsy sample tested by PCR and it was pos. for Bartonella henslea.
He improved with abx and the GI doc then said that maybe it wasn’t Crohn’s (he also mentioned that he had not had granulomas).
He is still in tx for chronic Lyme and Bart but his GI sx have been manageable and his current adult GI doc doesn’t think he ever had Crohn’s. Perhaps Bartonella infection should be considered when there are GI manifestations.
What a powerfull, well stated post.
I feel that my Lyme was triggered by 3 simultaneous vaccinations that I was given at an initial doctor appointment. I had a rash a year prior to this along with horrible joint pain and vertigo/fatigue but brushed it all off. Then, about a year and a half later (when I got the flu, tetanus and pneumo vaccine) I had a full blown neurological onset that almost made me end my life at age 36.
It has taken persistance through frustration to find a doctor to re-test and LISTEN to me. I finally got a positive (very) lyme western blot and the doctors are listening to me like I am sane versus insane! I am on 3 weeks of Doxy to clear a disease that has profoundly affected my life in every way since the summer of 2006.
On a final note, I am feeling better, but am afraid I will NEVER be the same.
Or perhaps IDSA should consider extending the antibiotic treatment until it really kills the bacteria because perhaps some Borrelia might be killed in three weeks but other survives and fortifies after the treatment is stopped? Plus if the patient is just treated with Doxy and no other type of medicine, the parasites and other bugs are left untouched? Ignoring the co-infections is ignoring the severity of the illness! My opinion.
Doxy has always helped to reduce symptoms for me, but it never came close to a lasting remission.
Not recommended for anyone to do, but I got lots of Doxy prescribed for "malaria prevention" and took high doses and it significantly reduced symptoms.
After taking Plaquinil + Clarithromycin and some Flagyl I experienced a remission that has lasted for several months. I think I stopped that treatment too soon, because I am slowly seeing symptoms return.
Tick-borne bugs are almost impossible to kill it seems. It's a true nightmare.
I too have had success on Doxy. In fact it's the only thing that seems to reduce the Lyme load to a place of functional living. I do worry though that it isn't a long-term solution. Plaquenil/Zithromax was of NO help and has taken me back from months of progress.
Do you ever see Doxy work long-term? It's amazing how individualized treatment regimens have to be.
or perhaps his Crohn's weakened his immune system so that Lyme had a much more rapid dissemination than is normal for a healthy patient.
I feel like we'd heard of doxy failures for acute cases for as long as they've been prescribing doxy (granted, earlier on in the 80's., doctors were probably prescribing 10 day courses, not 3 week ones, but there were exceptions).
Can someone please tell me who this doc is? My son (6 years old) just tested IGG positive through IgeneX and has neurological issues. We are seeing a LLMD and he put my son on oral amoxicillin. I've read that neuro Lyme requires IV abx, so I'd like a 2nd opinion about treatment protocol. My email address is mbnienaber@aol.com. Thanks!
Blog topic suggestion: "Herxheimer Reaction"
I've had Lyme for many years, and I have had my fair share of Herxheimer reactions. I find that many people who speak of their disease use the term "herxing" indiscriminantly to describe any discomfort resulting from the illness.
For me the real herxheimer reaction is a short, but very intense peak of symptoms that peak in a matter of hours, with subsequent recovery that can take 2-3 days or so. These reactions are apparently due to an acute exodus of spirochete bacteria due to a massive immune reaction (no claim to know much about this). Typically I get sore throat in the middle of a working day and rapidly get worse and finally wake up in the middle of the night with the throat feeling as if I had the worst flu ever. I mean REALLY sore, to the point that I am not able to swallow water. Then it mysteriously dissipates within just a couple of hours leaving me feeling very shaken and battered, but the throat feeling much better. This always happens after an "immune lowering event" such as lack of sleep, stress, travel, minor colds etc...
My point is that when people say they "herx continuously" for months on end, I don't think these are true herxheimer reactions, but severe discomfort resulting from toxins released from dying pathogens. If you are "herxing" for more than a couple of days, it ain't herxing in my opinion - and the true peak is short and VERY brutal.
I don't know how many true herxheimer reactions I have had, but I can probably count them on my fingers - even though I have had this for over a decade. Generalized discomfort is almost chronic though. As I understand it, true herxing is a spirochete-specific phenomenon.
I mention this since it seems the herxheimer is the most distinguishing feature of spirochete infection as far as I know. If people haven't had this, maybe their problems are dominated by co-infections?
Does anyone know anything about Low Dosage Naltrexone? I think it's worth looking into, because all these antibiotics, willy nilly, is making us crazy. It seems that the immune system shuts down with Lyme. I'm looking for anything to get it up and running. Also, look into studies on AHCC,a mushroom derived medication. There is a study that shows an increase in NK cell activity of 249% with AHCC use. (Natural Killer cells are T-Cells)Good luck to us!
Helen,
my son has been on LDN for several months. Not sure if that's what has helped along with antibiotics and other supplements, but he's had enough improvement that his doc wants him to stay on it. He seems to be tolerating treatment better along with cutting out sugar from his diet.
Check out http://www.lowdosenaltrexone.org/
and I think there's a yahoo group as well.
IF three weeks of doxy does not work then the patient probably has a preexisting deficiency in the cellular immune system. Also, some bacteria are able to alter the expression of certain enzymes to facilitate cellular immune suppression. So in these patients LYME is more difficult to treat.
Following the enzymatic pathway for suppression, the amino acid Citrulline, should be able to reverse the suppression of the cellular immune system. It might be interesting to measure the cellular immune status of patient that do not respond to three weeks of doxy-- the failure in treatment might be scientifically explained and then a rational treatment plan devised.
Yes - I agree from my experience that doxy can fail even with early Lyme.
Could have to do with the host environment, is the person otherwise healthy with a good immune system.
Alana who is posting on our site Lyme iGuide just started Doxy - we are praying it goes well for her. Thank you for your wonderful blog we are adding it as a resource on our site.
I am about to see an infectious disease specialist to try to get my lyme under control. Basically 2 rounds of Doxy and symptoms keep coming back. I was just wondering what some peoples first symptoms were. I didn't notice a rash so I am just not sure how long I had before I first started having issues.
If anyone wants to read my full history I have it here.
https://docs.google.com/document/d/1O3Bis_paJhgODrCS5kc_8DlrFijwFoblWAFOOQ7dkIQ/edit
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