posted
After 9 months of symptoms and negative blood work, I've recently learned that my liver enzymes are elevate and rapidly rising. An ultrasound showed everything as normal. I discovered that this is a possible symptoms of Lyme and will see an Infectious Disease doctor this week. (And also seeking an LLMD if this doc isn't already one.)
From what I've researched, this could be Lyme induced hepatitis (though I test negative for Hep A,B & C). Anyone have any experience or info about this?
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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bettyg
Unregistered
posted
kp,
I just sent you a PM of newbie info, etc.
Please send me a PM, private message, icon showing 2 people standing togehter.
[/B] What is the name of the infectious MD you are going to see? Please PM me with this info..thx
fyi, we have found INFECTIOUS MDS should be avoided; they do NOT know how to treat CHRONIC lyme disease and treat only "early" lyme for LESS THAN 30 DAYS!
From the other post of info I sent, read Dr. B's 2005 LYME TREATMENT GUIDELINES.
Look also at the symptom list link in there too. You've got a lot of reading to do ... over & over.
You were smart; you joined here NOW to learn more before your appt.
Write down all your questions by important: critical at the top to lesser ones. Give MD a list and you keep yours. They can use this when they dictate your medical notes for more ACCURACY.
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posted
Welcome to LymeNet!!! Sorry you are sick, but you have come to the right place to get answers. Lots of friendly helpful people here.
The elevated liver enzymes also could be a possible indicator for Babesia -- another tick-borne infection.
Suggest you post a list of your major symptoms and others on the board can give you some more feedback on the likelihood of Lyme and other tick-borne coinfections.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
Which liver enzymes in particular? Different ones indicate different possible causes.
Posts: 1184 | From north america | Registered: Feb 2003
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posted
I'm with you David. This could be chemical induced from your medications. I am assuming that your Lyme Literate Physician told you to hold off on your antibiotics temporarily with the elevated enzymes?....
Infectious disease doctor.... eeeewwww! Please reconsider. They will probably just tell you you don't have Lyme.
-------------------- We have only this moment, sparkling like a star in our hand... and melting like a snowflake. Let us use it before it is too late. Posts: 221 | From the hills | Registered: Mar 2006
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posted
To answer a few questions: At the time the liver enzymes were found to be elevated, the only meds I was taking was Advil - maybe 6 per day. I HATE taking meds without a good reason so I had refused to take the Celebrex the Rheumy prescribed. I have not yet been treated for Lyme so I haven't been on antibiotics other than a week for an ear infection in Feb.
In April, my AST was 159 and ALT 168. Two weeks later, AST was 188 and ALT was 211. Another month later, AST down to 150 but ALT up to 261. An ultrasound showed everything working normally. (My friend is a radiologist so I heard it straight from radiology and not the doctor.)
My other symptoms: migratory joint pain swelling of ankles and legs night sweats exhaustion muscle weakness tingling in arms and legs depression (who wouldn't be!) weight gain over 10 pounds - not related to meds irritability
Rheumatologist put me on Prednisone to control the pain (which has helped but is only temporary) so now I also have side effects from that including extremely dry skin on fingertips (cracked and bleeding despite using Eucerin lotion).
Hope that helps explain my issues!! I welcome any suggestions. Lyme seems the likely cause but I know these symptoms could be RA or Lupus too although I have not been diagnosed despite seeing numerous docs.
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Yes, avoid the infectious disease doctors and get to a Lyme literate doctor.
I had rapidly rising and astronically high liver enzymes from the antibiotic Ketek and severe liver damage.
In addition to being checked for hepatitis A,B,C, you must be checked for autoimmune hepatitis to see if your body is attacking your liver. This is especially important if you have a history of any other autoimmune diseases.
Prednisone or any steroid is considered a no-no for Lyme patients because these drugs suppress our already compromised immune systems. However, I understand that without a definitive diagnosis, many rheumatologists and hepatologists will prescribe steroids to reduce inflammation. So the better you can either rule in or rule out Lyme, the better.
Have you gone off the Advil? Being on it long term isn't the easiest thing on the liver. When my liver enzymes skyrocketed, I had to go off EVERYTHING, but of course discuss that with your doctor.
I had to go through a liver biopsy to finally determine what had happened. The biopsy wasn't nearly as bad as I had expected, so don't be scared if you do need to have one.
The coinfection Bartonella can also raise liver enzymes. Your symptom of nights sweats is very consistent with Babesia.
Keep us posted.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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posted
I forgot to add that I tested negative for Hepatitis A, B and C. My Rheumatoid Factor is 6. My ANA is borderline (but all docs say it is normal). I've been tested for mono, Epstein Barr, thyroid, etc. I've also had fluid drained from my knee and tested. EVERYTHING has been normal except for the recent liver enzymes and a "borderline" positive for strep.
I am a pain in the *ss with these doctors and insist on testing they may not have considered. I've had at least 7 different draws. The liver enzymes were a find from my new primary. The strep test was one I asked for. (A friend thought she had Lyme and it ended up being strep - caused severe knee pain.)
I'm concerned that whatever unknown disease I have is possibly damaging my liver. Neither of the two docs I'm currently seeing seem to think it has anything to do with the Advil I'm taking (under their direction). I'm very careful to not take more than 6 per day without due reason. The Rheumy wanted me on the max dosage of Celebrex and I refused, so he said to take the Advil instead. (Can't imagine what damage the Celebrex would have created!)
I appreciate the responses regarding coinfections and my symptoms. I've added that to my list to take to the Infectious Disease doc on Wednesday.
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
Rapidly migrating joint pain.... Thats very specific to Lyme. If a rheumatologist missed that there is something really wrong (with him). the other symtoms in cinjction with Lyme are highly support of Lyme being very high on the list of possibilities.
I WOULD IMMEDIATELY STOP THE PREDNISONE. Live with the pain for now as the steriod will make things even worse in the longer term. Prednisone is a quick fix to get you out the office door. In all but grave or life threatening sitations I would decline it PERIOD.
So, IF you have lyme, you got bit by a tick and if so ticks can carry all sorts of other bad things. One such thing is babesia. It is distantly related to malaria and its life cycle is unknow but it is known that it does affect the liver in a number of ways....
As the others have said, you would be well advised to quickly find a Dr who understands and has experience treating tick borne diseases (LLMD). I would recommend that to anyone with migrating joint pain without hesitation and even more so with the extra symptoms you describe.
Good luck.
Posts: 1184 | From north america | Registered: Feb 2003
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posted
Certainly look for the cause -- whether it is infectious or chemically induced from your medications.
In the meantime consider using liver protectant/healing products like GMO-free lecithin and Maximum Milk Thistle.
My values went up when I started antibiotics but not as high as yours. Since I have been taking these products the AST and ALT are back in the teens even when I am on three antibiotics at a time.
Posts: 211 | From NC | Registered: Dec 2005
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posted
Hi KP, Welcome to LymeNet. Sorry you're having problems.
Concerning the Prednisone - If there's a possibility of Lyme disease, taking prednisone can make treatment of LD more difficult. I've never taken prednisone, but I think it has to be stopped gradually.
Before making a change, check with your dr or pharmacist for instructions.
I don't have a medical background, but based on my experiences will offer a few suggestions:
Find a Lyme Literate Med Dr (LLMD) - ASAP.
Go to Seeking a Dr here on LymeNet & put your location in the title. Then, on the left, check Support Groups in NJ & surrounding states. They should have a list of LLMDs who have lots of "satisfied customers".
If I were in your place, I'd cancel the appt with the Infectious Disease Dr - unless (s)he is recommended as an LLMD. Your symptoms could be Lyme and/or Co-Infections, so I wouldn't want to spend the time, money, & energy seeing someone who is not an LLMD.
Also, there's a possibility that a wrong diagnosis could cause insurance problems in the future.
Have you been tested for Lyme & co-infections? There are only a couple labs that specialize in testing for Tick-Borne Diseases. You need to be sure that your testing is done by one of these labs.
LLMDs know which labs to use & they have more experience in interpreting the test results. Remember that Lyme is a clinical diagnosis & NO lab test should be used to "rule-out" Lyme.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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posted
Thanks cbb. I know that Prednisone cannot be stopped immediately. It will actually make me very sick to stop that way. It has to be done gradually which I plan to start this week if not today! I've only been on the Prednisone for 7 weeks so it shouldn't take too long to come off of it but it has to be done carefully.
I don't think the Infectious Disease doctor is an LLMD but I know they treat for Lyme since they treated my mother 16 years after her tick bite. I have a whole bunch of questions to ask the ID doc before accepting treatment.
I am just learning about coinfections and researching to see if that could apply to my situation. And I am still trying to get some more information on the LLMD in my area. I really want to know how many have been satisfied with his work.
It's amazing how much research is necessary to get treatment. If I had cancer, the doctor would be telling me what the protocol would be instead of me telling the doctor! This is an upside down disease!!
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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posted
Be sure to include a total iron profile, serum FERRITIN an absolute must !!
Posts: 116 | From Plano, Texas, USA | Registered: May 2004
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posted
No, I never had the vaccine. My husband had it though. I am just very skeptical about new meds/vaccines, etc. so I tend to wait and see what happens before I try it.
I'm really not a very outdoorsy person so I didn't think I would need it. I just never realized how much time I would spend outside at my kid's sports events not to mention just watering flowers in my tick-infested yard!!
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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An infected family member of mine had rapidly rising liver enzymes post Ketec(antibiotic) use. They continued to rise even after several weeks post cessation of the Ketec until stopping her daily Alleve use with the 'zymes then returning to normal.I think the non-steroidal anti inflammatory drugs hit the liver harder than a lot of people think(most people know of thier impact on the kidneys).
Just a thought considering your advil use.
Travlr1
Posts: 66 | From West Coast | Registered: Jul 2006
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