I was treated in 1992 for lyme disease with IV Ceftriaxone for 4 weeks. I had aseptic meningitis, bell's palsy and gland swelling all within 6 weeks and was then dx with lyme and treated. I have never been the same since- dx'd with and lyme arthritis many gears ago. Recently tested positive for lyme again and put on po doxycycline. I am looking for a doc in MA, who will try IV antibiotics.
It sounds like you were undertreated all those years ago. While I can't help finding a specific doctor, I can recommend that you find a local Lyme support group and ask them for recommendations. I don't think MA has been very tolerant of LLMDs. You might need to travel a ways.
Note: We don't usually mention doctors names on line unless they are already quite public. They can be harrassed for treating Lyme patients beyond the IDSA guidelines.
You can also contact ILADS and ask for referrals based on your location. You'll want an experienced ILADS doc.
I think you are doing the right thing in looking to get further treatment for Lyme. Keep us posted!
Thank you so much!! I will definitely look for a lyme disease support group and had never thought to do of this. . I think I have had lyme infection since 1992 and was diagnosed with fibromyalgia in 1993, then lyme arthritis a few years later. The doc I am seeing is very nice however he it is new infection and
So sorry, my phone is acting up and having hard time typing. Doc thinks it is a new infection and not as severe as neuro sx's I had in 1992, so he feels po antibiotics are the way to go. I am scared and worried that the lyme bacteria are deeply rooted in brain. I work full time as an executive in a demanding profession and have felt like my memory is not very good and that cognitively I am declining. Thanks for tip on ILADS and being cautious of posting doc's names.
Doctors are told only to prescribe IV abx for really bad neuro symptoms. They tend to be dismissive of cognitive problems that to the patient are very significant, but to the medical field are just "mild." I don't know how medicine got to this point of dismissing or discounting what the patient says they are feeling. But I have read multiple examples of doctors who are patients being treated like this by other doctors, and of course being shocked by it.
How do you get diagnosed with Lyme arthritis without being treated at that point for Lyme? Did the doc say that you developed arthritis years after your infection, even though the infection is supposedly long gone? Is that the so-called "post Lyme Disease treatment syndrome" where your own immune system is causing your arthritis?
From what I have read, I thought Lyme arthritis came from long term untreated Lyme Disease.
"From what I have read, I thought Lyme arthritis came from long term untreated Lyme Disease."
I've begun to wonder if there are lots and lots of us wandering around with low level cases of Lyme that the immune system keeps in check until a re-infection or another serious stressor (other illness, big life event) comes along, and then the immune system can't keep suppressing the symptoms any longer.
That would be consistent with joint problems post-Lyme, which maybe isn't entirely "post"-Lyme, or is a re-infection that manifests that way. Not just a binary situation of sick/not sick ---- instead a low-level case for a long time that manifests with mild-ish but annoying symptoms like joint pain or tiredness. Just a thought ....
I was told by the Infectious Disease MD (who originally treated me for neuro Lyme with IV ceftriaxone) that I had Lyme arthritis and that it was a complication of Lyme disease. He said some people had cardiac complications as well. This doc also told me that there was no way the Lyme infection was still present and that the fibro and Lyme arthritis were "complications" of not having been immediately treated when I had aseptic meningitis. I was in the hospital for 7 days with this and had very stiff neck-could not bend my head, photophobia, noise was excruciating. I would not have had Bell’s Palsy a few weeks later or parotid gland swelling weeks after the Bell's Palsy, if I had been tx with antibiotics right away. The parotid glands on both sides of my neck were so swollen I could not close or open my mouth well and it was so painful. I remember sitting there with tears running down my face silently as it hurt to even cry. That is when I was sent to the ID MD and was seen the same day.
That was a long time ago and I don’t even know if chronic Lyme or post Lyme syndrome was even in the medical vernacular. I do remember it was 2 years or so after being tx for lyme and he took pictures of my left knee as it was swollen and my shoulder area and mid back as odd swelling and lumpiness in the muscles. Said it was lyme arthritis and started me on Celebrex and Elavil small dose at night for fibro and referred me to arthritis doc.
Thanks!! I will contact ILADS right now. I can easily travel to CT. I will go farther if I have to but difficult to travel with work and I am so exhausted after work I don't do anything else. My kids are grown and my hubby and kids are worried about me. I just hope I can keep working as so sore and tired I feel like giving up. I am only 50 so need to work at least another 15 yrs.
I'm so sorry for all you have been through! Your doc back in '92 was pretty progressive to be willing to treat so aggressively, given how little was known back then. It may be that the treatment just beat back the infection and your immune system has held it largely in check, but any continuing symptoms since then would make me ask whether the infection was fully treated. I mean, 20 years ago -- and lots has happened in the medical awareness of Lyme since then.
I would definitely do what you are doing -- find an up-to-date Lyme doc for a complete work up. Could be a new infection altogether, or a new infection
layered over the old one -- there are SO many ticks out there and Lyme being everywhere, it would be odd if there were NO re-infections from a new bite. And if your old infection was not fully treated, then a re-infection could really overload your immune system.
Do contact ILADS for a referral, but know that the docs aren't vetted to a standard, as far as I know, and some LLMDs are kind of far out there. So when you get the name(s) from ILADS, do some digging online and see what you find about the docs, then go for it, but if the doc seems oddball at all, go down the list to another doc. I would think you will be able to find a good doc nearby.
"Said it was lyme arthritis and started me on Celebrex and Elavil small dose at night for fibro and referred me to arthritis doc." This sounds like a doc who doesn't understand Lyme very well. (Fibromyalgia, give me a break. It's a syndrome, meaning a collection of symptoms with no known cause --- but I think it may well be just Lyme and/or coinfections by a weaselly name. Not medically trained here, but I do have my opinions!)
Your spirit sounds strong, and that makes all the difference. Let us know how it goes and how you do, and if our suggestions for finding an LLMD don't work, let us know. Take care --
I think most docs today (especially infectious disease docs) will tell you the same thing your doc of 20 years ago said. While Lyme can indeed cause permanent damage to joints, nerves and the heart, you can't really know what is permanent until you have been thoroughly treated by a doc with lots of experience treating advanced and chronic cases of Lyme Disease.
Just make sure that the next doc you go see is willing to treat you until you and the doctor agree you're as well as you can be. Lyme can throw a lot of systems in the body out of whack, and it can be complex and tricky to treat and to get you feeling better.
I will contact my friend and get the name. We don't post the names on here so if you could send me a private message with where you live now, I will ask her if there are any new docs that have popped up.
It may take ILADS a couple of days to respond, dunno. You can also look around their website and see if you find any docs in your travel area. Finding the right doc is critical, because it can be a somewhat lengthy process of diagnosis and treatment. There is a lot of personal judgment involved, and imo having good rapport with the LLMD is important.
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