Off the top of my head, I don't recall anyone here who has used hydroxychloroquine (Plaquenil), tho there may be. If you were on *only* that drug, that doesn't seem to meet with agreement as suitable treatment by the article cited below (I am assuming the author "Donta ST" is Sam Donta, a well-known and well-respected Lyme doc). If I read it correctly, it says hydroxychloroquine should be used with another antibiotic like clarithromycin, but there are also other options and combinations.
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Med Sci Monit. 2003 Nov;9(11):PI136-42.
Macrolide therapy of chronic Lyme Disease.
Donta ST.
Boston University Medical Center, 650 Albany Street-8th Floor, Boston, MA 02118, U.S.A. sam.***@****
Abstract
BACKGROUND: Macrolide antibiotics are highly active in vitro against B.burgdorferi, but have limited efficacy in the treatment of patients with Lyme Disease. As macrolides are less active at a low pH, their poor clinical activity might be due to localization of borrelia to an acidic endosome, and their activity improved by alkalinization of that compartment with hydroxychloroquine.
MATERIAL/METHODS: 235 patients with a multi-symptom complex typical of chronic Lyme disease, ie fatigue, musculoskeletal pain, and neurocognitive dysfunction and with serologic reactivity against B.burgdorferi were treated with a macrolide antibiotic (eg clarithromycin) and hydroxychloroquine.
RESULTS: Eighty % of patients had self-reported improvement of 50% or more at the end of 3 months. After 2 months of treatment, 20% of patients felt markedly improved (75-100% of normal); after 3 months of treatment, 45% were markedly improved. Improvement frequently did not begin until after several weeks of therapy. There were no differences among the three macrolide antibiotics used. Patients who had been on hydroxychloroquine or macrolide antibiotic alone had experienced little or no improvement. Compared to patients ill for less than 3 years, the onset of improvement was slower, and the failure rate higher in patients who were ill for longer time periods.
CONCLUSIONS: These results support the hypothesis that the Lyme borrelia reside in an acidic endosome and that the use of a lysosomotropic agent augments the clinical activity of macrolide antibiotics in the treatment of patients with chronic Lyme Disease. In contrast, the efficacy of tetracycline in such patients is not affected by hydroxychloroquine.
PMID: 14586290 [PubMed - indexed for MEDLINE]
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Having an allergic reaction is certainly a problem, and it sounds like your LLMD is taking it seriously. That is, needless to say, a very good thing that it is taken seriously.
The symptoms you have that are so annoying are not unlike those reported by others who have posted here. Did you ask your doc if s/he can give you something for the symptoms?
==>> Were you blood-tested for anything other than Lyme?
My Igm and Igg Western Blot came back postive.
IGm 31 band +++ and 41++ and my IGG 31+/ 39 IND/ 39IND/ 41++
The med that I had a reaction to was Hydroxychloroquine.
She will not put me back on anything until the rash is completly gone. But this tightness is driving me crazy!!!!!!!!!!!!
Thanks
Welcome to MedHelp. I'm glad you found your way to an LLMD.
What were you tested for? Lyme only, or Lyme and other diseases that the same ticks sometimes carry?
What meds were you on that you reacted to?
What did the LLMD suggest that you do then?
This is my first time writing so bear with me if on go on and on.
I had Lyme years ago (1989 to 1996) extremly sick on antibotics and IV Therapy for years got better at least I think I did. Anyways 2009 I started feeling lousy again had numerous symptoms and went to numerous doctors for a year some symptoms the same as last time but some much diffrent. Had many test for Lyme and they always came back negative ( From Quest) I finally found a LLMD and sent my blood work to Igenx and got a postive test.
My LLMD put me on meds. but got a serve reacation from them so off of everything for know. But before I started meds I have some strange symptoms tight scalp, forhead and nose also tingling sensations and pins and needles and still have. And I feel so dry my hands, nose, eyes this is driving me crazy. Is this lyme or something else. Had cat scans , blood work and MRI all came back normal
Thanks for any help
and PS -- I agree with Wonko: press ahead on all fronts to get an appointment. I've even been known to see two different MDs in close succession to decide which one I liked better, and then cancelled (as soon as possible) the next appointment with the less user-friendly one.
Your symptoms sound similar to mine from last year -- I got Lyme and Ehrlichiosis (now more accurately called Anaplasmosis Phagocytophilum, but MDs often still call it Ehrlichiosis).
The tingly, itchy pinprick feelings were all over my body, and my eyes got VERY bloodshot.
I had previously had Lyme and babesiosis, and the symptom constellation was completely different from Lyme w/ Ehrlichiosis. And of course, different people get different symptoms even if they have the same diseases.
Be sure your LLMD tests for all the suspect coinfections and not just Lyme. Depending on your symptoms, s/he may not test for some of them, but at least have the conversation about what you are being tested for. Better to pay a little money to find out you don't have something than to save a few bucks and continue without complete treatment.
Let us know how you do -- best wishes!
It sounds like you are already aware of how the diagnosis and treatment of Lyme and associated infections hinges on what type of doctor you see.
The symptoms you describe could be from Lyme or other TBI, and I agree that an LLMD is your best chance to further rule Lyme in or out given the delay since your bite and your negative serology.
We're in prime tick season, so you may find that many LLMD's have waiting lists to get in for a first appointment. Therefore, I would suggest that you move forward on that front sooner than later.
There are many online referral services for finding an LLMD near your location, see for example http://www.chroniclymedisease.com/llmd-referrals (note this site also advertises a book about Lyme which I haven't read, my reason for providing this site is the list of links it contains to referral sites).
Of course there are other conditions that could also cause your symptoms, and ruling those in or out may be critical to your receiving an accurate diagnosis. Don't be afraid to pursue different doctors in parallel. Often we logically want to make one move at a time. However, for a number of conditions (including Lyme) the sooner you start treatment, the better. So moving forward on multiple fronts at once may be to your advantage.
Have you had other testing or specialists weigh in on your situation?
Keep us posted & good luck.