My 25 year-old niece lives in southeastern NY state. Last year she was diagnosed with Lyme by her GP and did the usual 3 weeks of doxycylin. Felt better, and that was that. She doesn't remember a tick bite, and I don't know how long she had symptoms, etc.
Last year also she got a diagnosis of Pernicious Anemia and has been taking B12 injections. Her levels are now normal, but of course she will have this monitored because PA does not go away. It is an autoimmune disorder, which my grandmother also had. Autoimmune thyroid problems are big in my family (I have hypo, well-treated) and I also have MS, so this motif is in the forefront of my consciousness. But back to my niece---
She has not been feeling well lately, with problems including joint pain and flaky skin patches, and saw a dermatologist recently, who told her she has Psoraisis. He or she also said she has Rheumatoid Arthritis and should see a rheumatologist. These two are also autoimmune. I'm wondering if Lupus could be in the picture, but in any case, I can hardly believe that in the past year she has developed 3 autoimmune diseases: Pernicious Anemia, RA, and Psoriasis.
Her mother was diagnosed with Lyme about 13 months ago, took the antibiotic and was not better, or at least seemed to relapse when the drug effect wore off. Main symptoms were fatigue and cog fog. Her GP (same as her daughter's) was agreeable to keep prescribing doxy for a couple of months, and she seems better now, though she under-reports things so I'm not entirely sure. She has advised my niece to ask for more doxy tomorrow and she will do so.
So, it's good medical practice to look for one unifying cause of symptoms, as it's highly unlikely that anyone would suddenly get so many separate illnesses. Can Psoriasis be part of Lyme? I can't find anything to that effect. My niece has been quite healthy all her life and not a complainer.
Any comments from you very knowledgeable people would be greatly appreciated.
Your niece is lucky to have you thinking big thoughts on her behalf. I would do the same analysis you are doing.
Since she doesn't know exactly when she was bitten, it's possible she was bitten quite some time ago, and maybe was bitten again recently, who knows .... sometimes we have visitors here who are fixated on when exactly they were infected, when in truth, many of us never know, and even if we do remember a tick and a circular rash, it may not be the first or event the second or third time the person was bitten! Think of it like mosquito bites ... often not seen, not always a welt, never sure how many bites or when. That's in many ways parallel to Lyme, but docs seem to fixate on When Was The Bite, when in truth maybe we know about one bite (or none), and so the history and infection could be much older than one assumes.
What's important, in my untrained mind, is to find a doc who focusses on the person as she is today, takes a history of symptoms (and bites if known), and based on that, runs some tests to see what comes back.
To compound matters, doxy alone is generally not effective except almost immediately after the bite ... and if you don't know when you were bitten, or whether a bite you recall is the first one you got. So it's a pretty big leap, esp. when symptoms continue after a short course of doxy, to say 'cured.'
Lyme bacteria have a survival trick of hiding in cartilage (hence sometimes sore knees are a symptom, but I never had them) and also in slimy areas the bacteria create called 'biofilms.' The immune system cannot reach the bacteria in those areas, so doxy often won't cut it, and an additional antibiotic is needed (often Flagyl) to pierce the biofilms so the other antibiotic (sometimes something other than doxy) can kill the Lyme bacteria.
And then there are co-infections: other, separate diseases carried by the 'Lyme' ticks that require different testing and often different antibiotics.
The combinations are many, given timing, infections, immune system strength, and so on. My next step in your situation would be to find a Lyme specialist for both niece and her mother and get them an evaluation. No need to tell the current, local doc about it -- sometimes that just causes the barriers to go up, and you might need the local doc again sometime. If you have copies of all tests done to date, a Lyme doc might see useful data; if you don't have copies, you can ask for them from the doc's office, with a bland 'Oh, just trying to tidy up the family records' and see if that helps. Although you shouldn't have to, I sometimes will offer to pay the photocopy costs, since the counter people in a doc's office are (like everywhere else) told to keep copying costs down. But you are entitled to copies of your very own, and a future doc could see patterns in historical tests that the other docs didn't see. Doesn't sound important, but it could be, and if you don't get the copies for the new doc to see, you will never know.
Okay, end of copying lecture.
How to find and LLMD. You can look around online for Lyme or LLMD and your nearest city, or you can email to
contact [at] ILADS [dot] org
and tell them your location and how far you can travel. ILADS (Intl Lyme and Associated Disease Society) is the main voluntary group for LLMDs ... which is not a degree or title, but just patient slang for 'Lyme-literate MD', meaning a doc who thinks big thoughts about Lyme.
When I was (after 20 docs) diagnosed with Lyme and a co-infection, I dragged a family member along to see the doc too. The tests were run, and Family Member had the same two things I had: Lyme and babesiosis. No symptoms except generalized tiredness, compared to me: and I was a wreck. Brain fog, fatigue, generally confused, cranky, bloated, miserable. So everyone is different, and each immune system reacts differently.
We are healthy again, and it was definitely worth the aggravation and cost of getting tested and treated. I would be nonfunctional today otherwise.
I never went through a preliminary wrong diagnosis of anything, it was just "I don't know" from 20 docs, but I agree with your view that a six pack of auto immune diseases is stretching the concept just a tad.
Be aware that autoimmune diseases like the ones you list are often treated with steroids, and steroids are the WRONG thing to do in Lyme, which is a bacterial infection and need the immune up and fighting, NOT suppressed. So I would be sure there was no chance of Lyme before going down the autoimmune path. Sometimes an LLMD who can't raise a positive Lyme test from an ill patient will give a short course of antibiotics and then re-test, and a positive result will often happen then, which then informs the treatment that follows, so there are more steps to go through, but you are already doing well to even have thought of Lyme.
Oh, and you mention hypothyroid: Lyme can suppress thyroid function too, and it did in me. I was on thyroid supps for a short while during Lyme treatment but suddenly my thyroid kicked back in and I was a wild woman -- awake ALL night one night, unable to sleep. That was my last thyroid pill! And that was several years ago.
About psoriasis as a symptom, I'm not familiar with that, but someone else here might be. Lyme affects everyone differently, and the coinfections confuse things even more, which is why it's so important to have a Lyme-wise doc on the team.
Let us know what you do and if we can help, and know that we're rooting for you all. Your family is SO lucky to have you there!
Hi, just to add to what Jackie said. I was miss diagnosed with MS and Lupus among many other things when it was Lyme. I became hypothyroid and I still am because I am still ill. I was also B 12 and Vitamin D deficient.
I wound up on a ventilator in the hospital because of steroids for these supposed autoimmune illnesses that I really didn't have.
Also a few months of doxy won't do much. A much longer course is needed if you find an LLMD they will guide your niece.
Take care. It's great you are watching out for her!
"So, it's good medical practice to look for one unifying cause of symptoms, as it's highly unlikely that anyone would suddenly get so many separate illnesses. Can Psoriasis be part of Lyme? I can't find anything to that effect."
Exactly. What is the odd? One of doctors I saw actually asked me "Don't they ever figure out why you are having all of these conditions? I never met a patient with so many conditions. It is bizarre."
Now in my 30's I have been diagnosed with hypothyroidism, rheumatoid arthritis, and other conditions in a short span of the time, piling on a long list of other separate illnesses that started in my early 20's.
I was also diagnosed with multiple skin conditions- "really bad lucks" is the word my dermatologist used. None of standard dermatological treatment worked.
Now as for psoriasis, It is possible your niece do not have true psoriasis, it may appears as such as it was in my case.
I have heard stories of other lyme patients who suffer "psoriasis" and when they underwent Lyme disease treatment, psoriasis resolves.
When I started Rocephin IV, it was a huge surprise for me and my dermatologist to see many of my skin conditions resolves.
Take a look at the url below. It contains photograph of various kind of skin manifestations from Lyme disease and coinfections. Psoriasis is one of them, scroll down to see photos of psoriasis in lyme patients.
Essdipity - your suspicions are good. I have read about people with dormant or low grade or in-remission autoimmune disorders that get worse when they get Lyme Disease. Lyme does mess with the immune system. They just don't fully understand how or why it is so different in different people.
It is also possible for Lyme to mimic autoimmune diseases, sometimes very convincingly to experts. However, when given immune suppressants, Lyme patients invariably get worse.
I do recall a post on the blog of a doctor who treats Lyme (LymeMD). He mentions in a Feb. 2009 post that he has had a few patients whose psoriasis cleared up with Lyme treatment.
I also highly encourage your niece to go see a LLMD. Tell her to pay whatever it costs, as it could very well be her ticket to wellness. A couple months of Doxy won't do much for her at this point. She needs to be treated by someone very experienced in treating entrenched cases of Lyme.
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